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Women who have undergone mastectomy : their experiences making the decision about breast reconstruction… Claydon, Anne Elizabeth 1986

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WOMEN WHO HAVE UNDERGONE MASTECTOMY: THEIR EXPERIENCES MAKING THE DECISION ABOUT BREAST RECONSTRUCTION: A QUALITATIVE STUDY  by  ANNE ELIZABETH CLAYDON B.S.N., U n i v e r s i t y o f B r i t i s h Columbia, 1977  A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING in THE FACULTY OF GRADUATE STUDIES The School o f Nursing  We accept^-this t h e s i s as comforming to the r e q u i r e d s t a n d a r d  THE UNIVERSITY OF BRITISH COLUMBIA February 1986 © Anne E. Claydon, 1986  In p r e s e n t i n g  this thesis  i n partial  f u l f i l m e n t of the  r e q u i r e m e n t s f o r an a d v a n c e d d e g r e e a t t h e U n i v e r s i t y of  British  it  freely available  agree t h a t for  Columbia,  I agree that f o r reference  permission  the Library  shall  and study.  I  that  copying or p u b l i c a t i o n  f i n a n c i a l gain  shall  Department o f The  University  1956  Main  Vancouver, V6T 1Y3  (3/81)  NURSING of B r i t i s h  Mall  Canada  A p r i l 21, 1986  of this  It is thesis  n o t be a l l o w e d w i t h o u t my  permission.  DE-6  thesis  s c h o l a r l y p u r p o s e s may be g r a n t e d by t h e h e a d o f my  understood  Date  further  f o r extensive copying o f t h i s  d e p a r t m e n t o r by h i s o r h e r r e p r e s e n t a t i v e s . for  make  Columbia  written  11  Abstract This study was designed to explore post-mastectomy women's decision-making experience i n r e l a t i o n to t h e i r choosing o r r e f u s i n g breast r e c o n s t r u c t i o n . The l i t e r a t u r e review c l e a r l y i l l u s t r a t e s a lack o f knowledge about the f a c t o r s that i n f l u e n c e breast r e c o n s t r u c t i o n decision-making.  A  phenomenological  approach was used to guide t h i s q u a l i t a t i v e study. Data were c o l l e c t e d v i a a s e r i e s o f semi-structured interviews from 16 women who had consulted a p l a s t i c  surgeon  regarding breast r e c o n s t r u c t i o n . Of these women 13 underwent breast r e c o n s t r u c t i o n and 3 refused t h i s option. ranged i n age from 32 to 64 years.  The women  Twelve women were married and  l i v e d with t h e i r partners, one was s i n g l e , and the remaining three had been married but now l i v e d alone.  Most o f the women  had c h i l d r e n . Decision-making  i n these women was c h a r a c t e r i z e d by an  i n t u i t i v e s t y l e as opposed t o a l o g i c a l ,  systematically-sequenced  d e c i s i o n s t y l e endorsed by t r a d i t i o n a l d e c i s i o n t h e o r i s t s . Each woman demonstrated her own unique s t y l e o f decision-making. The i m p l i c a t i o n s o f t h i s study focus on the c r i t i c a l need o f post-mastectomy women t o be thoroughly assessed, given r e l e v a n t breast r e c o n s t r u c t i o n information and have follow-up  support  during t h e i r breast r e c o n s t r u c t i o n decision-making process. The emphasis i n nursing education should be d i r e c t e d a t educating  iii nurses about the importance  of wholeness, knowledge of the  f a c t o r s i n f l u e n c i n g a woman's choice regarding b r e a s t r e c o n s t r u c t i o n and the n e c e s s i t y f o r understanding decision-making  process i t s e l f .  the  Nursing research can play a  v a l u a b l e r o l e i n f u r t h e r i n g our knowledge about the complex concept of wholeness, the c a t a l y t i c e f f e c t of i n f o r m a t i o n on women's behavior with regard to b r e a s t r e c o n s t r u c t i o n decision-making, decision-making  and the s i g n i f i c a n c e of i n t u i t i v e i n r e l a t i o n to b r e a s t r e c o n s t r u c t i o n .  C l a r i s s a P. Greefi, ^ f i a i r p e r s o n  iv Table of Contents Abstract . . . . . . Table of Contents Acknowledgements .  Page i i iv vi  CHAPTER ONE - Introduction  Background to the Problem Statement of the Problem and Purpose D e f i n i t i o n of Terms I n t r o d u c t i o n to t h i s Study's Methodology Assumptions Limitations . . . . . . Summary  1 6 7 8 11 12 12  CHAPTER TWO - Review of the Literature  Body Image Theory Body Image and S e x u a l i t y Self-Concept Impact o f P r o s t h e s i s on Body Image C h r o n o l o g i c a l Developments i n Breast R e c o n s t r u c t i o n T r a d i t i o n a l Versus H o l i s t i c P e r s p e c t i v e i n Breast R e c o n s t r u c t i o n Timing Issues i n Breast R e c o n s t r u c t i o n Factors Involved i n Decision-Making Breast R e c o n s t r u c t i o n Research Decision Theory Behavioral D e c i s i o n Theory P s y c h o l o g i c a l D e c i s i o n Theory Role of Information i n Decision-Making P a t i e n t Decision-Making Research Summary . .  14 18 22 26 . . . 30 33 34 36 38 42 55 58 59 63 67 71  CHAPTER THREE - Methodology  Introduction S e l e c t i o n of P a r t i c i p a n t s Criteria for Selection S e l e c t i o n Procedure C h a r a c t e r i s t i c s of the P a r t i c i p a n t s Data C o l l e c t i o n C o n s t r u c t i o n of Accounts Data A n a l y s i s Ethical Considerations Summary . . .  73 73 74 74 75 76 78 79 80 81  V  Table o f Contents, Cont'd CHAPTER FOUR - Presentation of Accounts  Introduction E s t a b l i s h i n g Context Loss o f Wholeness Emotional Adjustment t o Cancer and Mastectomy P r o s t h e s i s Experience Search f o r Wholeness E s t a b l i s h i n g Meaning A c q u i r i n g Information Weighing Consequences o f R e c o n s t r u c t i o n Perception o f Surgery and Surgeon Regaining Wholeness Defending the D e c i s i o n Recovering Summary  82 83 89 90 95 100 106 113 119 127 134 134 142 148  CHAPTER FIVE - Discussion of the Findings  Loss o f Wholeness Women Who Underwent Breast R e c o n s t r u c t i o n Women Who Refused Breast R e c o n s t r u c t i o n Search f o r Wholeness Regaining Wholeness and Recovery The D o c t o r - P a t i e n t R e l a t i o n s h i p E s t a b l i s h i n g Rapport C r e a t i n g a Demi-God The Decision-Making Process Rational Versus I n t u i t i v e Decision-Making Weighing the Consequences Summary  151 151 154 155 162 164 164 170 175 178 184 186  CHAPTER SIX - Summary, Conclusions, and Implications For Nursing  Summary o f the Study Conclusions Implications f o r Nursing P r a c t i c e Implications f o r Nursing Education Implications f o r Nursing Research  188 192 193 199 201  Reference L i s t  204  Appendix A: Information and Consent Form Appendix B: Sample Questions f o r I n i t i a l Interview  214 . . . 216  vi Acknowledgements I wish t o express my s i n c e r e a p p r e c i a t i o n t o the s u p p o r t i v e members o f my t h e s i s committee:  C l a r i s s a P. Green ( c h a i r ) f o r her  r e a l i s t i c outlook, u n f l a g g i n g enthusiasm and c h a l l e n g i n g questions which gave me the i n s p i r a t i o n t o persevere, and A l i s o n Rice f o r her w i l l i n g n e s s t o take on t h i s p r o j e c t , her understanding and f r e s h perspective. I would a l s o l i k e t o thank S a l l y Thorne f o r b e l i e v i n g i n me and f o r the knowledge she f r e e l y shared about t h e r e s e a r c h p r o c e s s . A very s p e c i a l thanks goes t o my husband J i m , who stood by me and held our f a m i l y together so I c o u l d r e a l i z e my dream.  I am  g r a t e f u l t o J e n n i f e r , my daughter, f o r g i v i n g me j o y and a much needed a p p r e c i a t i o n o f l i f e i n the d i f f i c u l t times.  I deeply  a p p r e c i a t e the l o v i n g c o n t r i b u t i o n o f Lucy, my deceased mother-in-law who gave so f r e e l y o f her time and energy t o do my t y p i n g i n the M.S.N, program.  I am g r a t e f u l t o my parents who  supported me i n so many ways and who i n s t i l l e d i n me the value o f a sound e d u c a t i o n . I am indebted t o Dr. W. Graham and Dr. R. Thompson who supported t h i s endeavour and who gave me wise c o u n s e l , and t o t h e i r r e s p e c t i v e nurses Kay and J a c k i e who were so h e l p f u l . I want t o thank Sue Skinner f o r her kind support and e x p e r t i s e which transformed t h i s t h e s i s i n t o a r e a l i t y . I wish t o express a h e a r t f e l t thank you to the women i n t h i s study who so w i l l i n g l y gave o f themselves to teach me about the importance o f the b r e a s t r e c o n s t r u c t i o n decision-making experience.  1 CHAPTER ONE Introduction  Background t o t h e Problem "Breast cancer i s the most common cancer i n women" (Bostwick, 1983, p. 272).  A c c o r d i n g t o S t a t i s t i c s Canada f i g u r e s , there were  17,016 cases o f women admitted t o h o s p i t a l with the d i a g n o s i s o f b r e a s t cancer i n 1980 t o 1981 ( S t a t i s t i c s Canada 82-206, 1984, p. 110).  In 1983, 3,974 Canadian women d i e d o f b r e a s t cancer  ( S t a t i s t i c s Canada 84-203, 1985, p. 26).  The d i a g n o s i s o f b r e a s t  cancer i s e s p e c i a l l y traumatic because b r e a s t cancer i s both p o t e n t i a l l y m u t i l a t i n g and 1 i f e - t h r e a t e n i n g . Bard (1972) emphasizes the multi-pronged t h r e a t o f cancer i n c l a i m i n g t h a t cancer commonly invokes images o f i n t e n s e p a i n , contamination, c h r o n i c d e t e r i o r a t i o n , and death. Symbolizing motherhood, f e m i n i n i t y , and sexual a t t r a c t i v e n e s s , b r e a s t s a r e h i g h l y valued i n our s o c i e t y (Mauldin, 1980; Thomas, 1978).  The combination o f the l o s s o f such a  powerful female symbol and the negative c o n n o t a t i o n s o f cancer r e s u l t s i n p s y c h o l o g i c a l trauma f o r many women (Maguire, 1975; Renneker & C u t l e r , 1952).  These women o f t e n f i n d i t extremely  d i f f i c u l t to a d j u s t t o t h e i r changed p h y s i c a l appearance f o l l o w i n g mastectomy (Cocke, 1977; M i l l e r , Graham, T e p s i c h & T a y l o r , 1977). Also Maguire's (1975) study r e p o r t e d t h a t many  post-mastectomy  women r e f e r r e d to themselves as " s e c o n d - c l a s s " , "below standard", "misshapen",  " m u t i l a t e d " , " p e c u l i a r " , " l o p s i d e d " , "abnormal", and  2 "so inadequate"--terms which r e f l e c t s e r i o u s damage t o t h e i r sel f-esteem (p. 5 6 ) . A woman's immediate and f u t u r e r e l a t i o n s h i p s can a l s o be a f f e c t e d by a mastectomy (Bard & Sutherland, 1955; Krumm, 1977; Mauldin, 1980; Rennecker & C u t l e r , 1952).  Due t o the personal  nature o f the b r e a s t l o s s , women tend to feel alone i n t h i s experience and, as a r e s u l t , i s o l a t e d . The option o f b r e a s t r e c o n s t r u c t i o n , an i n t e r v e n t i o n reported t o r e s t o r e f e e l i n g s o f wholeness and self-esteem, i s becoming i n c r e a s i n g l y a v a i l a b l e t o the post-mastectomy p o p u l a t i o n (Kushner, 1982; Zalon, 1978).  Even ten years ago,  post-mastectomy women were not l i k e l y t o be r e s t o r e d t o normal appearance as a r e s u l t o f b r e a s t r e c o n s t r u c t i o n , due t o the newness and i m p e r f e c t i o n s o f b r e a s t r e c o n s t r u c t i o n (Berger & Bostwick, 1984).  techniques  Cocke (1977) c i t e s f i g u r e s regarding  the incidence o f b r e a s t r e c o n s t r u c t i o n among post-mastectomy women i n the United S t a t e s : In a recent q u e s t i o n n a i r e r e l a t e d t o t h i s s u b j e c t , i t was noted t h a t up t o mid-1975 only 1,186 r e c o n s t r u c t i o n s had been performed.  I f one used H o r t o n s estimate o f 500,000 1  post-mastectomy p a t i e n t s who a r e p o s s i b l e candidates f o r r e c o n s t r u c t i o n , one can see t h a t only 0.2 percent have a c t u a l l y undergone r e c o n s t r u c t i o n ( p . 11). According to S t a t i s t i c s Canada (1980-81) f i g u r e s , 315 Canadian women underwent t o t a l r e c o n s t r u c t i o n o f the b r e a s t i n  3  1980 to 1981.  Of these women, 30 underwent b r e a s t r e c o n s t r u c t i o n  in B r i t i s h Columbia ( S t a t i s t i c s Canada A2-208, 1980-81). the comparatively  Due t o  recent i n t r o d u c t i o n o f b r e a s t r e c o n s t r u c t i o n as  a procedure, a l l s t a t i s t i c s p r i o r t o 1980 are o f q u e s t i o n a b l e r e l i a b i l i t y because o f the outdated coding used.  T h i s coding  makes i t impossible to determine the actual number o f b r e a s t r e c o n s t r u c t i o n s u r g e r i e s performed because they have been grouped with several other b r e a s t s u r g i c a l  procedures.  The 1982 to 1983 unpublished f i g u r e s r e v e a l e d t h a t 34 women in B r i t i s h Columbia underwent b r e a s t r e c o n s t r u c t i o n ( S t a t i s t i c s Canada A2-208, 1982-83).  The most c u r r e n t unpublished  figures  from the Canadian C l a s s i f i c a t i o n o f D i a g n o s t i c , Therapeutic and S u r g i c a l Procedures (1983-84) show t h a t 51 women underwent r e c o n s t r u c t i o n i n B r i t i s h Columbia i n t h a t p e r i o d . Two l o c a l B r i t i s h Columbia p l a s t i c surgeons, who w i l l remain u n i d e n t i f i e d , reported a marked i n c r e a s e o f b r e a s t r e c o n s t r u c t i o n surgery i n t h e i r r e s p e c t i v e p r a c t i c e s . The f i r s t p l a s t i c surgeon stated t h a t ten y e a r s ago he d i d one b r e a s t r e c o n s t r u c t i o n operation per year and i s c u r r e n t l y performing an average o f two r e c o n s t r u c t i o n s a month. The second p l a s t i c surgeon reported that f i v e years ago he d i d approximately  five breast  r e c o n s t r u c t i o n s per y e a r ; four years ago, 15 r e c o n s t r u c t i o n s u r g e r i e s ; three years ago, 30 r e c o n s t r u c t i o n s ; two years ago, 40 r e c o n s t r u c t i o n s u r g e r i e s ; and l a s t y e a r , 50 breast reconstructions.  4  These f i g u r e s i l l u s t r a t e the growing i n c i d e n c e o f b r e a s t r e c o n s t r u c t i o n performed  i n B r i t i s h Columbia, r e f l e c t i n g the  increased a v a i l a b i l i t y and s i g n i f i c a n c e o f t h i s treatment o p t i o n to post-mastectomy women. Because b r e a s t r e c o n s t r u c t i o n i s a v a l i d o p t i o n i n the r e h a b i l i t a t i v e process, there i s a need f o r c u r r e n t , accurate information about t h i s o p t i o n t o be made a v a i l a b l e t o mastectomy p a t i e n t s (Bostwick, 1983; Graham & Turner, 1981; Hunt, 1981). These women have a r i g h t t o know about the p o s s i b i l i t y o f b r e a s t r e c o n s t r u c t i o n even i f they have no immediate plans t o undergo such surgery.  As a p r o f e s s i o n a l group, nurses, e s p e c i a l l y those  on s u r g i c a l u n i t s and i n cancer treatment s e t t i n g s , i n t e r a c t f r e q u e n t l y with mastectomy p a t i e n t s . Given t h i s s i t u a t i o n , questions a r i s e r e g a r d i n g the type o f knowledge needed by nurses and the r o l e they should assume with p o t e n t i a l b r e a s t reconstruction candidates. In order t o e f f e c t i v e l y counsel women who a r e f a c i n g mastectomies, nurses must be knowledgeable o f the p s y c h o l o g i c a l needs o f women a f t e r mastectomy, the reasons f o r i n c r e a s e d numbers o f b r e a s t r e c o n s t r u c t i v e s u r g e r i e s i n recent y e a r s , the s u r g i c a l procedures a v a i l a b l e , general p o s t - o p e r a t i v e c a r e , and the c o m p l i c a t i o n s which may f o l l o w (Rut!edge, 1982, p. 470). While there i s a growing abundance o f medical l i t e r a t u r e on the p h y s i c a l nature o f t h i s implant surgery t h a t give g u i d e l i n e s  5 to p h y s i c i a n s , there i s l i t t l e on which nurses can draw on. Rut!edge (1982) reviewed the nursing l i t e r a t u r e i n r e l a t i o n t o t h i s i n c r e a s i n g l y popular s u r g i c a l procedure f o r women and discovered t h a t from 1975 to June 1981 there had been only nine a r t i c l e s w r i t t e n about the n u r s i n g care o f p a t i e n t s e x p e r i e n c i n g breast r e c o n s t r u c t i o n . The nursing l i t e r a t u r e ' s f a i l u r e t o address t h i s need leaves nurses without d i r e c t i o n regarding the type and amount o f h e a l t h care support and i n t e r v e n t i o n needed by women e n t e r t a i n i n g b r e a s t r e c o n s t r u c t i o n . Within the e x i s t i n g l i t e r a t u r e on b r e a s t r e c o n s t r u c t i o n , the p s y c h o l o g i c a l aspects o f b r e a s t r e c o n s t r u c t i o n a r e c o n s i d e r e d important.  Both n u r s i n g and medical l i t e r a t u r e , however, devote  minimal a t t e n t i o n t o the process t h a t women go through when seeking i n f o r m a t i o n on and making d e c i s i o n s about b r e a s t reconstruction.  C a r r o l l - J o h n s o n (1982, unpublished)  emphasizes  t h i s i n s t a t i n g t h a t "there has been a c r i t i c a l lack o f data-based  research on the p s y c h o l o g i c a l f a c t o r s i n v o l v e d i n the  d e c i s i o n to pursue b r e a s t r e c o n s t r u c t i o n f o l l o w i n g a mastectomy" (p. 55).  The f a c t o r s a f f e c t i n g a woman's d e c i s i o n t o undergo  breast reconstruction or refuse reconstruction are l a r g e l y unknown among t h i s growing p o p u l a t i o n .  In order t o be p e r t i n e n t  and e f f e c t i v e i n t h e i r care o f mastectomy p a t i e n t s , nurses need to know about what f a c t o r s a f f e c t t h i s decision-making  process.  Because these f a c t o r s have never been researched, they a r e based on assumption r a t h e r than f a c t . This knowledge regarding f a c t o r s  6  i s a v i t a l p r e r e q u i s i t e t o h e l p i n g post-mastectomy women make an informed choice about b r e a s t r e c o n s t r u c t i o n . In the l i m i t e d amount o f b r e a s t r e c o n s t r u c t i o n l i t e r a t u r e , the p s y c h o l o g i c a l f a c t o r most f r e q u e n t l y assumed to be r e l a t e d t o decision-making  i s body image (Bostwick, 1983; C l i f f o r d , 1979;  Goin & Goin, 1981; Needleman, 1979).  A u t h o r i t i e s on the s u b j e c t  suggest t h a t the way i n which women p e r c e i v e t h e i r body image a f t e r a mastectomy and the way they f e e l about t h i s p e r c e p t i o n are f a c t o r s i n making a c h o i c e about b r e a s t r e c o n s t r u c t i o n . Cases o f post-mastectomy women who refused t o accept the l o s s o f t h e i r b r e a s t but, a f t e r b r e a s t r e c o n s t r u c t i o n , adjusted and f e l t s a t i s f i e d with t h e i r body image a r e c i t e d as examples o f t h i s viewpoint (Goin & Goin, 1981; Hugo, 1977; Needleman, 1979). Whether o r not post-mastectomy women a l s o p e r c e i v e body image as a primary f a c t o r a f f e c t i n g decision-making  i s not  known. The need t o look a t t h i s process through the eyes o f the women undergoing  i t i s paramount i n developing  understanding.  U n t i l nurses a r e aware o f the s p e c i f i c needs o f t h i s p o p u l a t i o n , nursing care runs the r i s k o f being u n s u i t a b l e , unsupportive, and inconsistent. Statement o f the Problem and Purpose The problem under study i s the l i m i t e d amount o f knowledge about the decision-making  process o f post-mastectomy women who  consider b r e a s t r e c o n s t r u c t i o n . The purpose o f t h i s study i s , t h e r e f o r e , to d e s c r i b e women's perceptions o f t h e i r experiences  7 as they went through the decision-making breast r e c o n s t r u c t i o n . t h i s decision-making  process r e l a t e d t o  S p e c i f i c a l l y , f a c t o r s which i n f l u e n c e d  process a r e i d e n t i f i e d and d e s c r i b e d . D e f i n i t i o n o f Terms  The f o l l o w i n g terms have been d e f i n e d f o r the purpose o f c l a r i f y i n g t h e i r meaning i n the statement o f the problem and purpose. Post-mastectomy woman - A woman who has had her b r e a s t ( s ) removed s u r g i c a l l y f o r treatment o f cancer. Breast r e c o n s t r u c t i v e surgery - The s u r g i c a l implant o f a breast p r o s t h e s i s underneath the s o f t t i s s u e s a t the mastectomy s i t e t o r e p l a c e the m i s s i n g b r e a s t ( s ) .  T h i s may o r may not  include a nipple aerolar reconstruction. P a r t i c i p a n t - For the purposes o f t h i s study, (1) a woman over the age o f 21 who has had a mastectomy and who has c o n s u l t e d a p l a s t i c surgeon and chosen t o have b r e a s t r e c o n s t r u c t i o n , o r (2) a woman over the age o f 21 who has c o n s u l t e d with a p l a s t i c surgeon b u t chosen not t o have b r e a s t r e c o n s t r u c t i o n . Decision-making  - " i d e n t i f y i n g problems f o r d e c i s i o n ,  d e v i s i n g a l t e r n a t i v e courses o f a c t i o n , and choosing an a l t e r n a t i v e " (A D i c t i o n a r y o f the S o c i a l Sciences, 1976, p. 6 0 ) . Factor - "something (as an element, circumstance, o r i n f l u e n c e ) t h a t c o n t r i b u t e s t o the production o f a r e s u l t " (Webster, 1976, p. 8 1 3 ) .  8  I n t r o d u c t i o n to This Study's Methodology The f o l l o w i n g s e c t i o n e x p l o r e s several b a s i c t h e o r e t i c a l assumptions  u n d e r l y i n g the phenomenological  qualitative research.  approach t o  The goal o f phenomenology l i e s i n  d e s c r i b i n g experience as i t i s l i v e d by i n d i v i d u a l s who determine t h e i r own r e a l i t y ( O i l e r , 1982). knowledge i s s o c i a l l y c o n s t r u c t e d .  R i s t (1979) s t a t e s t h a t " a l l No i n f o r m a t i o n e x i s t s o u t s i d e  that produced by i n d i v i d u a l s w i t h i n t h e i r s o c i a l and c u l t u r a l context" ( p . 18). When an i n d i v i d u a l i n t e r p r e t s another i n d i v i d u a l ' s a c t i o n s i n the c o n t e x t o f h i s own r a t h e r than the other's p e r c e p t i o n s , he l a c k s accurate knowledge to understand t h i s person.  When the i n d i v i d u a l i s able to grasp the other  person's unique viewpoint, however, t r u e and more accurate understanding o f the other person i s developed (Schutz, 1967). The r o l e o f the r e s e a r c h e r i n phenomenological  research i s  to be "the major instrument o f data c o l l e c t i o n " (Ragucci, 1972, p. 487). The success o f the r e s e a r c h e r depends upon the a b i l i t y to e s t a b l i s h r a p p o r t and r e s p e c t with the sample p o p u l a t i o n (Ragucci, 1972) and to conduct each study with an open mind. This prevents the f o r m u l a t i o n o f pre-hypotheses  r e l a t i n g t o how  and why the sample p o p u l a t i o n behaves as i t does before t h e study commences (Lindemann, 1974; O i l e r , 1982).  The r e s e a r c h e r ' s r o l e  w i t h i n t h i s methodology i s one o f " d i s c o v e r y , o f generating an e x p l a n a t i o n r a t h e r than v e r i f y i n g an imposed theory.  Such an  approach eschews a preconceived t h e o r e t i c a l framework and allows  9  the study to emerge from the words of p a r t i c i p a n t s " (Wilson, 1977, p. 106). In-depth i n t e r v i e w i n g i s a method used to gather d e t a i l e d information of the p a r t i c i p a n t ' s p o i n t o f view.  "Interviewing i s  both a d i r e c t source of i n f o r m a t i o n on b e l i e f and knowledge systems and a form o f v i c a r i o u s o b s e r v a t i o n to i n c r e a s e case examples o f v a r i o u s types o f o v e r t behavior" ( P e a r s a l l , 1970, p. 346).  The t r a d i t i o n a l focus on r e l i a b i l i t y and v a l i d i t y of  the instrument does not apply i n q u a l i t a t i v e research and i s l i m i t e d to the r e l i a b i l i t y and accuracy o f the informant's account ( D i e r s , 1979; O i l e r , 1982).  P e a r s a l l (1970) r e f e r s to  informants as being 'expert witnesses' because "the s e l e c t i o n favours persons who are e s p e c i a l l y knowledgeable with regard to v a r i o u s a c t i v i t i e s and bodies o f knowledge" (p. 346).  The women  who p a r t i c i p a t e i n the decision-making process r e g a r d i n g b r e a s t r e c o n s t r u c t i o n w i l l be the experts i n t h i s r e s e a r c h e r ' s study. Schwartz and Jacobs (1979) contend t h a t s u i t a b l e and r e l e v a n t questions are produced from the i n t e r a c t i o n process between i n t e r v i e w e r and informant.  "At a l a t e r p o i n t these are  i n c o r p o r a t e d i n t o the ' i n t e r v i e w guide"' (Schwartz & Jacobs, 1979, p. 40).  Data a n a l y s i s generates a d d i t i o n a l questions which  can be used i n subsequent i n t e r v i e w s to c l a r i f y and s o l i d i f y conceptual c a t e g o r i e s (Anderson & Chung, 1982).  D i e r s (1979)  s t a t e s t h a t the r e s e a r c h e r and her r e l a t e d thoughts, f e e l i n g s , and p e r c e p t i o n s r e p r e s e n t another data source.  She f e e l s t h a t  involvement with the p a r t i c i p a n t s adds r i c h n e s s to the data i n terms of the i n t e r a c t i o n s , a n a l y s i s , and i n t e r p r e t a t i o n . Phenomenology assumes t h a t a l l i n v e s t i g a t o r s have b i a s e s which can be c o n t r o l l e d through awareness and attempts to analyze the data o b j e c t i v e l y . phenomenological  However, i t i s important f o r  r e s e a r c h e r s to r e a l i z e t h a t t h e i r  assumptions  are not completely o b j e c t i v e . T h i s awareness on the p a r t o f the researcher "prevents s u b j e c t i v e i n f l u e n c e s from becoming too f i x e d and r i g i d " ( D a v i s , 1978, p. 191). Phenomenological  theory guides data a n a l y s i s which i s  grounded i n the s o c i a l r e a l i t y o f the p a r t i c i p a n t s ' experiences (Lindemann, 1974; O i l e r , 1982).  Data from the i n t e r v i e w s are  c o l l e c t e d and s o r t e d i n t o c a t e g o r i e s . From these c a t e g o r i e s , themes emerge which are compared f o r s i m i l a r i t i e s , d i f f e r e n c e s , and new concepts ( D i e r s , 1979; O i l e r , 1982).  As a r e s u l t , i t i s  p o s s i b l e to i d e n t i f y a conceptual framework which a c t s to guide subsequent c o l l e c t i o n and a n a l y s i s o f the data ( P e a r s a l l , Simms, 1981; Wilson, 1977).  1970;  There i s no c l e a r - c u t s e p a r a t i o n  between coding, data c o l l e c t i o n , or data a n a l y s i s i n q u a l i t a t i v e research.  Rather, these three processes o v e r l a p c o n t i n u o u s l y  throughout every i n v e s t i g a t i o n ( G l a s e r & S t r a u s s , 1967).  Data  c o l l e c t i o n , coding, and a n a l y s i s continue u n t i l conceptual c a t e g o r i e s w i t h i n the data are r e v e a l e d ( D i e r s , 1979).  Clusters  of themes i n r e l a t i o n to these c a t e g o r i e s form the theory about the phenomenon under study (Knaack, 1984).  The u l t i m a t e goal of  11 data a n a l y s i s l i e s i n accurate r e p r e s e n t a t i o n of the phenomenon in such a way t h a t the reader experiences i t v i c a r i o u s l y . The above c h a r a c t e r i s t i c s o f the phenomenological  approach  make t h i s method i d e a l f o r o b t a i n i n g data from the p a r t i c i p a n t ' s point of view.  Simms (1981) s t a t e s t h a t a " f r e s h p e r s p e c t i v e "  r e s u l t s and b e n e f i t s a t o p i c area i n which important f a c t o r s have not y e t been i d e n t i f i e d (p. 356).  "Phenomenology provides a more  p e r f e c t f i t c o n c e p t u a l l y with the f u n c t i o n s o f c l i n i c a l  nursing  and with many of the research questions t h a t evolve from c l i n i c a l p r a c t i c e " (Davis, 1978, p. 187).  The preceding d i s c u s s i o n  c l e a r l y demonstrates t h a t phenomenology i s a r e l e v a n t approach to answer the questions posed i n t h i s study regarding the p a r t i c i p a n t s ' decision-making  process i n b r e a s t r e c o n s t r u c t i o n .  Assumptions 1.  The two groups o f p a r t i c i p a n t s are able to i d e n t i f y and  are w i l l i n g to d e s c r i b e f a c t o r s i n v o l v e d i n the process whereby they (1) decided to undergo b r e a s t r e c o n s t r u c t i o n , or (2) decided to r e f u s e b r e a s t r e c o n s t r u c t i o n . 2.  The p a r t i c i p a n t s ' p e r c e p t i o n o f t h e i r decision-making  process can be obtained through the accurate r e p o r t i n g o f t h e i r accounts. 3.  An understanding o f the p a r t i c i p a n t ' s decision-making  about b r e a s t r e c o n s t r u c t i o n can be reached through a phenomenological  research  approach.  12  Limitations The sample was obtained from only two p l a s t i c  surgeons;  t h e r e f o r e , the g e n e r a l i z a b i l i t y o f f i n d i n g s w i l l be l i m i t e d . Time c o n s t r a i n t s l i m i t e d the degree to which the r i c h n e s s o f data could be completely e x p l o r e d .  Sample s i z e was a l s o bound by the  l i m i t a t i o n s o f time. Summary This chapter presented the problem and purpose o f the study and a l s o i n t r o d u c e d the methodology.  Chapter Two d e a l s with the  review o f l i t e r a t u r e which r e l a t e s to the formation o f the study's conceptual framework. The T h i r d Chapter e x p l a i n s how the methodological approach guided the study.  Chapter Four presents  and d e s c r i b e s the accounts given by the women i n t h i s study.  An  a n a l y s i s o f the accounts i n r e l a t i o n t o the p e r t i n e n t l i t e r a t u r e comprises Chapter F i v e . Chapter S i x d i s c u s s e s the summary and i m p l i c a t i o n s o f the study i n terms o f n u r s i n g p r a c t i c e , e d u c a t i o n , and r e s e a r c h .  13  CHAPTER TWO Review of the Literature  In order t o explore those t h e o r i e s p e r t i n e n t t o post-mastectomy women who c o n s i d e r undergoing  breast  r e c o n s t r u c t i o n , t h i s chapter examines t h e o r i e s o f body image and decision-making, as well as l i t e r a t u r e on b r e a s t r e c o n s t r u c t i o n . The i n t e r r e l a t i o n s h i p among these three areas w i l l be d i s c u s s e d f o r the purpose o f g i v i n g the reader i n s i g h t i n t o the decision-making  process o f b r e a s t r e c o n s t r u c t i o n .  In a d d i t i o n ,  l i t e r a t u r e r e l a t e d t o mastectomy i s presented c o n c u r r e n t l y with body image and b r e a s t r e c o n s t r u c t i o n theory i n order t o provide a d d i t i o n a l scope and meaning.  T h i s d i s c u s s i o n w i l l demonstrate  the need behind the present study as well as e x p l a i n the problem development and purposes o f t h i s study. The b r e a s t r e c o n s t r u c t i o n l i t e r a t u r e i s examined f o r the purpose o f e x p l o r i n g f a c t o r s t h a t may be r e s p o n s i b l e f o r a woman's d e c i s i o n to choose o r r e f u s e b r e a s t r e c o n s t r u c t i o n . Decision-making  theory i s presented i n order t o c l a r i f y the  process women undergo when making a d e c i s i o n regarding b r e a s t reconstruction. addressed.  Both d e c i s i o n theory and research a r e  Although t r a d i t i o n a l d e c i s i o n theory i s assessed,  s p e c i f i c p a t i e n t decision-making  regarding h e a l t h - r e l a t e d  experiences i s the primary focus s i n c e i t i s more r e l e v a n t t o the research questions posed i n t h i s study. The l i t e r a t u r e review i l l u s t r a t e s the lack o f nursing  14  research i n two major areas; f i r s t l y , the actual mechanics o f the decision-making  process i t s e l f a r e not explored, and secondly,  the f a c t o r s t h a t impinge upon a post-mastectomy woman's d e c i s i o n about b r e a s t r e c o n s t r u c t i o n have not been s t u d i e d .  As a r e s u l t  of these d e f i c i e n c i e s , nurses l i k e l y lack the knowledge needed to understand and a s s i s t women i n t h e i r decision-making.  It is  hoped t h a t t h i s study may be able to provide a d d i t i o n a l i n s i g h t into the c o m p l e x i t i e s o f t h i s decision-making  process.  Body Image Theory Theory e x p l a i n i n g women's body image provides a framework f o r the s e l e c t i o n and review o f the l i t e r a t u r e . The t h e o r e t i c a l underpinnings o f body image theory a r e useful i n understanding why the post-mastectomy woman c o n s i d e r s the option o f b r e a s t reconstruction.  S c h i l d e r (1950) used knowledge about body image  to e x p l a i n p a t i e n t r e a c t i o n s to l o s s o f body p a r t s and r e l a t e d functions.  He d e f i n e s body image a s :  the p i c t u r e o f our own body which we form i n our mind . . . The way i n which the body appears to o u r s e l v e s . parts o f the body-surface. impressions  We see  We have t a c t i l e , thermal,  pain  ( S c h i l d e r , 1950, p. 11).  N o r r i s (1978) s t a t e s t h a t an i n d i v i d u a l ' s unique body image develops from infancy by sequential steps i n d i f f e r e n t i a t i o n and that t h i s process i s dynamic.  " I t s goals a r e manipulation,  mastery and c o n t r o l o f r e l a t i o n s h i p s with s e l f , others and environment" ( p . 8 ) . Learning about one's body i s t y p i c a l l y  15 unstructured since i t occurs throughout l i f e as a r e s u l t o f continual exposure t o experience  (Selekman, 1983).  Body image  can be c a l l e d a postural model because i t i s only through c o n t i n u a l changes i n p o s i t i o n t h a t we come t o use our senses f u l l y and e s t a b l i s h a sense o f our body boundaries (McCloskey, 1976; S c h i l d e r , 1950). Because the a t t i t u d e s and responses o f others help us t o define our bodies (Wilson & K n e i s l , 1979; S c h i l d e r , 1950; Selekman, 1983), s o c i a l i n t e r a c t i o n i s r e q u i r e d t o form a concept of body image. The p r e v a i l i n g a t t i t u d e o f s o c i e t y towards breasts i s emphasized by C a r r o l l (1981):  "Breasts a r e g l o r i f i e d  and emphasized i n many aspects o f American l i f e ; they a r e not merely f u n c t i o n a l body p a r t s , but r a t h e r a r e equated with f e m i n i n i t y , sexual a t t r a c t i v e n e s s and n u r t u r i n g  behavior"  (p. 3 0 ) . S o c i e t y ' s i n f l u e n c e on i n d i v i d u a l perceptions i s c l e a r l y i l l u s t r a t e d , f o r example, by the f a c t t h a t both boys and g i r l s e n t e r i n g puberty a r e only too well aware t h a t the s i z e and appearance o f breasts a r e important  f a c t o r s i n the a t t r a c t i v e n e s s  and a c c e p t a b i l i t y o f a woman (Small, 1979).  T e l e v i s i o n and  magazine advertisements c o n t i n u o u s l y bombard our senses, s t r e s s i n g the sexual q u a l i t i e s o f b r e a s t s .  This attitude  regarding the a e s t h e t i c importance o f breasts may have f a r - r e a c h i n g i m p l i c a t i o n s f o r women who l o s e a b r e a s t due t o breast  cancer.  16 Loss i s the c e n t r a l theme o f mastectomy l i t e r a t u r e and research.  This i n c l u d e s the v i s i b l e l o s s o f the b r e a s t , p o s s i b l e  l o s s o f arm f u n c t i o n and appearance, the l e s s e n i n g o f self-esteem with regard to s e l f - c o n c e p t and s e x u a l i t y and, o v e r a l l , the l o s s of q u a l i t y o f l i f e and p o s s i b l y the l o s s o f l i f e i t s e l f (Asken, 1975; Northouse, 1982; Woods & Woods, 1975). The a l t e r a t i o n o f body image caused by a mastectomy automatically triggers feelings of l o s s .  Following mastectomy, a  period o f g r i e v i n g f o r the l o s s o f a loved body p a r t occurs which Kolb (1959) l i k e n s to separation from s i g n i f i c a n t o t h e r s .  Denial  is a necessary p a r t o f the g r i e v i n g process a t f i r s t , so t h a t the post-mastectomy p a t i e n t i s not overwhelmed by the discrepancy between her mental body image and actual p h y s i c a l image ( B u t l e r , 1976). The depth o f the g r i e f r e a c t i o n r e l a t e s t o the s p e c i f i c value t h a t a woman's b r e a s t symbolizes  f o r her. S i l b e r f a r b  (1977-78) contends t h a t the importance o f the b r e a s t "depends upon the p e r s o n a l i t y o f the i n d i v i d u a l , the actual f u n c t i o n a l d e f i c i t caused by the l o s s , the time during one's l i f e , and the s i t u a t i o n i n which a change i n l i f e occurs" (p. 163). During the c r i s i s p e r i o d , when confronted with the d i a g n o s i s of cancer and the need f o r treatment, S c h i l d e r (1950) claims t h a t a sense o f d e p e r s o n a l i z a t i o n may overwhelm the a f f l i c t e d person. Sourkes (1982) s t a t e s t h a t f e a r s o f l o s i n g c o n t r o l and l o s i n g one's i d e n t i t y can be expressed statement:  i n one cancer  patient's  "I'm a f r a i d o f changing so much with t h i s disease  17 that I won't recognize myself" ( p . 35).  The mental anguish o f  l o s i n g the sense o f a p r e v i o u s l y i n t a c t body image i s exacerbated by the f e e l i n g s o f sadness, anger, and d e s p a i r t h a t a r e experienced  by some post-mastectomy p a t i e n t s .  These women a r e  l i k e l y to mourn the l o s s o f such p s y c h o l o g i c a l a t t r i b u t e s as f e m i n i n i t y and s e x u a l i t y along with the l o s t b r e a s t . Lerman's (1983/1984, unpublished) study attempted t o evaluate women's perceived changes i n m a r i t a l and sexual r e l a t i o n s h i p s and p h y s i c a l s e l f - c o n c e p t f o l l o w i n g b r e a s t reconstruction.  S i x t y - s i x women were i n v o l v e d i n her research  and the above changes were measured by an extensive which i n c l u d e d several standard s c a l e s .  Her r e s u l t s i n d i c a t e d  that "women who had r e c o n s t r u c t i v e surgery r e t r o s p e c t i v e l y t h a t they had experienced  questionnaire  reported a decrease i n f e e l i n g s  of a t t r a c t i v e n e s s , f e m i n i n i t y , importance o f t h e i r breasts and s a t i s f a c t i o n with t h e i r appearance i n c l o t h e s f o l l o w i n g mastectomy surgery and an i n c r e a s e i n these subsequent t o r e c o n s t r u c t i o n " (p. 66).  The m u l t i p l e l o s s e s s u f f e r e d as a  consequence o f t h i s marked change i n body image a r e well-evidenced.  Therefore, r e s t o r a t i o n o f normal body image i s  l i k e l y t o be an important c o n s i d e r a t i o n o f any woman who contemplates undergoing b r e a s t r e c o n s t r u c t i o n .  Lerman's study  w i l l be examined i n f u r t h e r d e t a i l i n a subsequent s e c t i o n o f t h i s l i t e r a t u r e review.  18 Body Image and S e x u a l i t y S i l b e r f a r b (1984) r e p o r t s t h a t an a l t e r a t i o n i n a woman's body image may be accompanied by a " l o s s o f the sense o f sexual i d e n t i t y , with a subsequent lowered self-esteem" ( p . 821).  This  a l t e r a t i o n i n body image can have profound i m p l i c a t i o n s f o r some women's post-mastectomy sexual adjustment.  Savage (1981)  s t r e s s e s the complexity o f s e x u a l i t y and i t s r e l a t i o n s h i p to body image i n s t a t i n g t h a t " i n t e r r e l a t e d components o f the sexual s e l f i n c l u d e ideal body image, body image, s e l f - c o n c e p t , and self-esteem" ( p . 152). Woods and Woods (1975) maintain t h a t a woman's p e r c e p t i o n r e g a r d i n g the value o f her m i s s i n g b r e a s t w i l l l i k e l y be " i n f l u e n c e d by the extent t o which the woman bases her self-worth and a c c e p t a b i l i t y on her appearance"  ( p . 149). The  l e s s a woman i s concerned with her p h y s i c a l appearance,  she w i l l  probably f e e l l e s s traumatized than i f her s e l f - w o r t h i s mainly based on other people's r e a c t i o n s to her body (Woods & Woods, 1975). Women who p e r c e i v e themselves as deformed f o l l o w i n g mastectomy are l i k e l y to respond t o t h e i r sexual p a r t n e r i n a withdrawn manner, which i n turn may threaten the support given by the spouse (Savage, 1983; S i l b e r f a r b , 1984; Woods & Woods, 1975).  The v u l n e r a b i l i t y o f post-mastectomy women was f u r t h e r  i l l u s t r a t e d i n a study done by Tarabocchia, S t e f a n i n i , Mustacchi, and M i l a n i (1983, u n p u b l i s h e d ) .  T h i s research i n v o l v e d 37  post-mastectomy women who ranged i n age from 34 to 49, were 18  19 months post-surgery, and had been married f o r a minimum o f seven years. Many p a t i e n t s reported t h a t c e r t a i n d i f f i c u l t i e s had a r i s e n a f t e r mastectomy:  an embarrassment t o be seen naked . . .  and to be touched on the b r e a s t by the spouse . . . a f e e l i n g o f being l e s s s e x u a l l y a t t r a c t i v e f o r the partner . . . and a need o f more a f f e c t i o n a t e behavior from him . . . (abstract). U n f o r t u n a t e l y , Tarabocchia e t a l . s (1983) study has not been 1  published and i t i s impossible t o a s c e r t a i n how they c o l l e c t e d t h e i r data and t o be sure t h a t t h e i r research r e s u l t s a r e accurate t o d e s c r i b e t h i s sample o f post-mastectomy women. Not enough s t u d i e s have been done i n the area o f post-mastectomy s e x u a l i t y t o r e p l i c a t e the f i n d i n g s o f the above study and l e n d it scientific  support.  Both the frequency o f i n t e r c o u r s e and the l e v e l o f sexual s a t i s f a c t i o n can o f t e n d e c l i n e i n women who have undergone mastectomy ( S i l b e r f a r b , 1984; Tarabocchia e t a l . , 1983).  Perhaps  a c o n t r i b u t o r y f a c t o r i s the f a i l u r e o f an external p r o s t h e s i s t o e s t a b l i s h any aspect o f normalcy i n sexual r e l a t i o n s h i p s because i t i s not a permanent p a r t o f these women's bodies (Greenberg, 1980; Thomas & Yates, 1977). Woods and Woods (1975) emphasize t h a t up t o t h e i r time o f w r i t i n g , "no documentation e x i s t s i n the l i t e r a t u r e regarding actual change i n frequency o f i n t e r c o u r s e o r orgasmic response  20 a f t e r mastectomy".  The m a j o r i t y o f a r t i c l e s w r i t t e n on the i s s u e  of s e x u a l i t y o f post-mastectomy women appear t o be i n the form o f l i t e r a t u r e reviews ( S i l b e r f a r b , 1984; Woods & Woods, 1975) which r e p o r t only s e l e c t e d f i n d i n g s from some research s t u d i e s .  There  i s no i n d i c a t i o n what type o f research was c a r r i e d o u t and how v a l i d the f i n d i n g s were. Lerman (1983/1984) measured changes i n m a r i t a l and sexual r e l a t i o n s , and p h y s i c a l s e l f - c o n c e p t i n post-mastectomy women who underwent b r e a s t r e c o n s t r u c t i o n .  S i x t y - s i x women who ranged i n  age from 30 t o 70 years o f age p a r t i c i p a t e d i n the study. Subjects underwent b r e a s t r e c o n s t r u c t i o n from 6 months up t o 8 years f o l l o w i n g mastectomy.  Scales o f sexual and m a r i t a l  r e l a t i o n s , feminine a t t r a c t i v e n e s s , and s e l f - c o n c e p t r a t i n g s were used to measure each woman's perception o f changes i n her sexual and m a r i t a l r e l a t i o n s and p h y s i c a l s e l f - c o n c e p t a t three d i f f e r e n t periods:  pre-mastectomy, post-mastectomy, and  post-reconstruction. The m a r i t a l r e l a t i o n s s c a l e i n c l u d e d questions about the frequency and l e v e l o f c o n f l i c t i n the r e l a t i o n s h i p , perceived s t a b i l i t y o f the marriage, perceived involvement o f the couple with each other, and the amount o f a f f e c t i o n a t e  behavior  demonstrated between spouses (Lerman, 1983/1984).  Items measured  on the sexual r e l a t i o n s s c a l e c o n s i s t e d o f the meaningfulness o f breast s t i m u l a t i o n during lovemaking f o r both spouses, the value of sex i n the marriage, frequency o f sexual i n t e r c o u r s e , and the  21 percent o f time t h a t orgasm i s experienced sexual r e l a t i o n s (Lerman, 1983/1984).  by the woman during  She used s c a l e s t h a t  measured feminine a t t r a c t i v e n e s s by asking questions such as the f e e l i n g s o f the woman regarding p h y s i c a l a t t r a c t i v e n e s s and f e m i n i n i t y , the value o f her breasts i n r e i n f o r c i n g these f e e l i n g s , and the l e v e l o f s a t i s f a c t i o n with her appearance i n clothes. Lerman's research "revealed a s i g n i f i c a n t overlap o f the m a r i t a l and sexual r e l a t i o n s and feminine a t t r a c t i v e n e s s s c a l e s " (1983/1984, p. 41).  She r e p o r t s t h a t women claimed t o have an  increase i n general m a r i t a l r e l a t i o n s from the p e r i o d before mastectomy t o the p e r i o d f o l l o w i n g r e c o n s t r u c t i o n .  Lerman p o s i t s  that the reason f o r t h i s i n c r e a s e i n m a r i t a l closeness may be due to having t o deal with the t h r e a t o f d i a g n o s i s and treatment o f cancer.  However, there was a s i g n i f i c a n t decrease i n the  frequency o f sexual r e l a t i o n s post-mastectomy.  Her r e s u l t s  p e r t a i n i n g t o the decreased amount o f sexual r e l a t i o n s f o l l o w i n g mastectomy are supported  by Tarabucchia  e t a l . (1983).  As p r e v i o u s l y mentioned, Lerman's research e s t a b l i s h e s the l i n k between sexual r e l a t i o n s and a woman's f e e l i n g s o f feminine attractiveness.  She a l s o r e p o r t s t h a t there was a s i g n i f i c a n t  r i s e i n the l e v e l o f these f e e l i n g s f o l l o w i n g b r e a s t reconstruction.  Lerman's f i n d i n g s regarding women f e e l i n g more  feminine and a t t r a c t i v e p o s t - r e c o n s t r u c t i o n a r e well-documented and supported  i n the b r e a s t r e c o n s t r u c t i o n l i t e r a t u r e (Berger &  22 Bostwick, 1984; Bostwick, 1983; Goin & Goin, 1981).  These  r e s u l t s demonstrate the importance o f body image and s e x u a l i t y i n women who c o n s i d e r b r e a s t r e c o n s t r u c t i o n .  The strength o f her  research l i e s i n the r e l i a b i l i t y o f the measurement s c a l e s used, which lend her study v a l i d i t y .  Her sample s i z e was a l s o l a r g e  in comparison t o many o f the other s t u d i e s t h a t a r e explored i n t h i s l i t e r a t u r e review, and as a r e s u l t , Lerman's f i n d i n g s a r e more g e n e r a l i z a b l e t o the l a r g e r p o p u l a t i o n .  U n f o r t u n a t e l y , she  was not able t o i n c l u d e a c o n t r o l group i n her study, which would have improved the soundness o f her experimental  design.  Finally,  her data were r e t r o s p e c t i v e , which could have caused more reported i n a c c u r a c i e s . cannot be underestimated  The importance o f Lerman's research i n terms o f addressing the r e l e v a n t  concepts p e r t i n e n t t o women who undergo b r e a s t r e c o n s t r u c t i o n . The r e s u l t o f her research succeeds i n f u r t h e r i n g h e a l t h p r o f e s s i o n a l s ' knowledge i n t h i s s p a r s e l y researched but c r i t i c a l subject. Self-Concept As p r e v i o u s l y noted, there i s an i n t i m a t e r e l a t i o n s h i p between body image and s e l f - c o n c e p t .  A change i n body image c a n ,  t h e r e f o r e , a f f e c t a post-mastectomy woman's s e l f - c o n c e p t . F o r t h i s reason, i t i s necessary t o be aware o f how a woman views h e r s e l f i n order t o know i f her view has a l t e r e d s i n c e the mastectomy.  T h i s s e c t i o n w i l l d e f i n e s e l f - c o n c e p t and  demonstrate t h a t the way i n which a woman f e e l s about h e r s e l f may  23 determine the amount o f i n t e r e s t she takes i n the p o s s i b i l i t y o f breast r e c o n s t r u c t i o n . C a r r o l l (1981) s t a t e s t h a t " s e l f - c o n c e p t i s i n e x t r i c a b l y i n v o l v e d with body image". Jenkins (1983) c i t e s B r i s s e t and U'Ren i n saying t h a t s e l f - c o n c e p t " i n c l u d e s ideas o f sel f-eval uation and s e l f - w o r t h " .  Savage (1981)-be!ieves t h a t "a  woman's s e l f - c o n c e p t i n c l u d e s the learned aspects o f her perceptions:  f e e l i n g s , v a l u e s , and b e l i e f s " ( p . 153). The task  of a c c u r a t e l y d e f i n i n g and measuring s e l f - c o n c e p t i s d i f f i c u l t because o f i t s complexity  ( J e n k i n s , 1983; Carrol 1-Johnson, 1982).  One study which attempted to do t h i s was c a r r i e d o u t by Pol i v y (1977) who measured changes i n body image and s e l f - c o n c e p t in a group o f mastectomy p a t i e n t s .  She compared a group o f 15  women who had undergone mastectomy with two other groups. These groups c o n s i s t e d o f 18 women who had had negative b i o p s i e s and 11 women who were admitted f o r various noncancerous o p e r a t i o n s . A l l the women were interviewed twice and given an e d i t e d v e r s i o n o f the B e r s c h e i d , Walster, and Bohrnstedt Body Image S c a l e .  This  measurement s c a l e was administered on three d i f f e r e n t o c c a s i o n s : before and f o l l o w i n g surgery, and again a f t e r several months had elapsed. Pol i v y ' s r e s u l t s i n d i c a t e d t h a t while the s u r g i c a l p a t i e n t s ' body image and s e l f - c o n c e p t d i d not change, the biopsy p a t i e n t s showed a d e c l i n e i n both c a t e g o r i e s a f t e r being t o l d they d i d n o t have cancer.  The mastectomy p a t i e n t s showed no d e c l i n e i n body  24 image and s e l f - c o n c e p t scores u n t i l several months had e l a p s e d . At t h i s time, the scores o f a l l the mastectomy p a t i e n t s were indicative of a loss o f self-esteem.  These f i n d i n g s may i n d i c a t e  that the mastectomy p a t i e n t s u t i l i z e d d e n i a l as a p r o t e c t i v e mechanism u n t i l they were able to c o n f r o n t the l o s s o f t h e i r breast.  Pol i v y ' s sample groups were small i n s i z e , which  prevents g e n e r a l i z a t i o n o f her f i n d i n g s to a l a r g e p o p u l a t i o n . However, her measurement techniques were s c i e n t i f i c a l l y sound and her i n c l u s i o n o f a c o n t r o l group lends her r e s u l t s v a l i d i t y . Her study c l e a r l y shows a strong l i n k between a woman's p e r c e p t i o n o f her body image and how she f e e l s about h e r s e l f . Another study was conducted by a Swiss p l a s t i c surgeon, who i n s t r u c t e d women to draw a s i l h o u e t t e o f themselves before and a f t e r t h e i r mastectomy (Timothy, 1977).  immediately Their  s i l h o u e t t e p o r t r a y a l s appeared normal and r e a l i s t i c a t both times.  A f t e r a few weeks had elapsed the women's drawings became  more f l a t t e n e d and male-looking i n shape, emphasizing the l a c k o f the b r e a s t (Timothy, 1977). The f i n d i n g s o f the above study lend support to Pol i v y ' s research by i l l u s t r a t i n g a time l a g between an a c t u a l body image change and the accurate p e r c e p t i o n o f t h a t change by the person herself.  U n f o r t u n a t e l y , Timothy does not s p e c i f y d e t a i l s o f the  above study, so the sample s i z e and methods o f measurement a r e unknown. As a r e s u l t , the v a l i d i t y o f the study i s q u e s t i o n a b l e and the r e s u l t s can only be construed as based on one  25 researcher's o p i n i o n .  I t appears t h a t the r e l a t i o n s h i p between  changes i n body image and timing o f decision-making breast r e c o n s t r u c t i o n has not been e l u c i d a t e d .  regarding  Other authors  have made c l a i m s , l a r g e l y unsupported, which a r e i n c o n s i s t e n t with these r e s u l t s . The w r i t e r speculates whether a lower s e l f - c o n c e p t a r i s i n g in women several months a f t e r t h e i r mastectomy a f f e c t s how women feel and make d e c i s i o n s about b r e a s t r e c o n s t r u c t i o n a t t h a t time.  C a r r o l l - J o h n s o n (1982, unpublished)  addresses t h i s i s s u e  by c l a i m i n g t h a t there i s a common assumption among h e a l t h - c a r e p r o f e s s i o n a l s t h a t one o f the major reasons women seek b r e a s t r e c o n s t r u c t i o n i s because o f a disturbance i n t h e i r s e l f - c o n c e p t as the r e s u l t o f mastectomy.  The converse b e l i e f t h a t women who  do not c o n s i d e r b r e a s t r e c o n s t r u c t i o n a r e t h e r e f o r e b e t t e r adjusted and have reached a higher l e v e l o f s e l f - a c c e p t a n c e p e r s i s t s , d e s p i t e the l a c k o f s t u d i e s t o support i t . T h i s b e l i e f appears t o be most f i r m l y entrenched  i n the e a r l y b r e a s t  r e c o n s t r u c t i o n l i t e r a t u r e between 1977 and 1981 (Cocke, 1977; Goin & Goin, 1981).  C a r r o l 1-Johnson (1982) a s s e r t s t h a t she was  unable to f i n d any v a l i d research s t u d i e s which t e s t e d the above assumption. I t appears t h a t i f the mastectomy experience has the p o t e n t i a l t o lower women's self-esteem, then t h i s experience needs f u r t h e r e x p l o r a t i o n as a p o s s i b l e f a c t o r i n the b r e a s t r e c o n s t r u c t i o n d e c i s i o n process.  The i s s u e o f how p e r c e p t i o n o f  26 body image and s e l f - c o n c e p t i n f l u e n c e a woman's  decision-making  about breast r e c o n s t r u c t i o n w i l l be explored f u r t h e r i n the breast r e c o n s t r u c t i o n s e c t i o n o f t h i s l i t e r a t u r e  review.  C a r r o l l (1981) s t r e s s e s t h a t there i s a need f o r a two- t o three-month follow-up f o r post-mastectomy women, t o allow f o r the body image adjustment t h a t occurs during t h i s time.  T h i s may be  a c r u c i a l time f o r a post-mastectomy woman t o c o n s i d e r h e r f e e l i n g s about b r e a s t r e c o n s t r u c t i o n .  The general  literature  suggests times t h a t a r e a p p r o p r i a t e f o r the surgeon t o d i s c u s s breast r e c o n s t r u c t i o n with the p a t i e n t .  However, i t does not  give d i r e c t i o n as t o the r e l e v a n t time f o r the woman h e r s e l f t o decide about t h i s surgery.  There i s a strong p o s s i b i l i t y t h a t  each woman would have a unique p e r c e p t i o n o f the best time f o r her decision-making.  This timing would l i k e l y be dependent upon  her p e r c e p t i o n o f her changed body image and would have t o be i n d i v i d u a l l y assessed during the follow-up. Impact o f P r o s t h e s i s on Body Image The preceding s e c t i o n s have i l l u s t r a t e d the i n t e r r e l a t i o n s h i p o f body image, s e x u a l i t y , and s e l f - c o n c e p t . Research f i n d i n g s i n the l i t e r a t u r e a l s o suggest a strong l i k e l i h o o d t h a t the wearing o f a p r o s t h e s i s can adversely a f f e c t body image and s e l f - c o n c e p t i n some post-mastectomy women. Perhaps the wearing o f a p r o s t h e s i s does not, as p r e v i o u s l y claimed, a s s i s t women t o regain a p o s i t i v e body image and may even have a negative e f f e c t on the q u a l i t y o f t h e i r l i v e s .  27 Therefore, f e e l i n g s r e l a t e d to the p r o s t h e s i s could be a f a c t o r in the decision-making  process regarding b r e a s t r e c o n s t r u c t i o n .  During the p o s t - o p e r a t i v e p e r i o d f o l l o w i n g mastectomy, the r e h a b i l i t a t i o n process focuses on p h y s i c a l recovery and a r e t u r n to the a c t i v i t i e s o f d a i l y l i v i n g .  The need f o r the p a t i e n t t o  begin wearing a temporary p r o s t h e s i s i s emphasized p r i o r t o discharge by h e a l t h p r o f e s s i o n a l s both i n p r a c t i c e s e t t i n g s and in the general l i t e r a t u r e (Silverman & Cohen, 1979). The r a t i o n a l e given f o r the e a r l y wearing o f a p r o s t h e s i s i s t h a t the sooner the woman's e x t e r n a l appearance i s r e s t o r e d t o normal, the sooner she w i l l a d j u s t t o her l o s s (Wiesenthal, 1984).  Wilson  and K n e i s l (1979) a l l e g e t h a t "the body image extends beyond the physical body.  Objects o f d a i l y use t h a t a r e i n t i m a t e l y  connected with the body s u r f a c e , such as a cane, c l o t h e s , a t a t t o o , makeup, and j e w e l r y a r e i n c o r p o r a t e d i n t o the body image" (p. 250).  I t i s t h e r e f o r e p o s s i b l e t h a t once a woman has  adjusted t o a p r o s t h e s i s , i t becomes p a r t o f her body image. Whether b r e a s t prostheses a r e s i m i l a r l y regarded as p a r t o f body image has not been s p e c i f i c a l l y s t u d i e d .  However, the f o l l o w i n g  research d e a l i n g with how women f e e l about t h e i r prostheses  lends  i n s i g h t i n t o the r e l a t i o n s h i p between p r o s t h e s i s and body image. While some women adapt t o wearing a permanent p r o s t h e s i s , a c e r t a i n number do not.  Greenberg (1980) b e l i e v e s t h a t there i s  widespread d i s s a t i s f a c t i o n with the a v a i l a b l e external p r o s t h e t i c devices.  "Many women do not f e e l a t ease while wearing the  28 i r r i t a t i n g , uncomfortable,  e x t e r n a l s u b s t i t u t e s f o r t h e i r missing  breast" ( p . 1 ) . Downie (1975) found t h a t f i f t y - s i x o u t o f a hundred women she i n t e r v i e w e d admitted t h a t t h e i r p r o s t h e s i s was uncomfortable place.  because o f i t s heaviness o r tendency t o s l i p o u t o f  Woods and Earp (1978) shared s i m i l a r f i n d i n g s and  reported t h a t t h r e e - q u a r t e r s o f the women i n t h e i r sample who wore prostheses reported d i f f i c u l t i e s ranging from poor f i t t o skin s e n s i t i v i t y and p a i n . Several authors h i g h l i g h t the i n h e r e n t i m p e r f e c t i o n s o f prostheses ( A n s t i c e , 1970; Thomas & Yates, 1977; Winkler, 1976). The more natural g e l - l i k e prostheses tend t o be expensive. P e r f e c t balance i s d i f f i c u l t t o a t t a i n with a p r o s t h e s i s i f a woman i s e i t h e r very s m a l l - o r l a r g e - b r e a s t e d .  Back d i s c o m f o r t  and muscle s t r a i n can develop as a r e s u l t o f a poorly prosthesis. touched.  balanced  Many prostheses do not f e e l o r sound natural when  They tend t o be h o t and i r r i t a t i n g t o the s k i n during  warm weather and t o change p o s i t i o n during a c t i v e e x e r c i s e . Contrary t o the view t h a t the p r o s t h e s i s can be i n c o r p o r a t e d into a woman's body image, Silverman and Cohen (1983) e x p l a i n why they feel t h a t f o r some women, the e x t e r n a l p r o s t h e s i s does not a l l e v i a t e the problem o f a l t e r e d body image: Although t h i s device may help women f e e l and look b e t t e r when c l o t h e d , i t does n o t change t h e i n t e r n a l deformed body image.  Since the form f e e l s f a l s e and i s f r e q u e n t l y  removed, the p a t i e n t continues t o be reminded t h a t the  29 breast i s absent (p. 142). F a i l u r e to f e e l comfortable with a p r o s t h e s i s can l e a d these women to shun s o c i a l a c t i v i t i e s because o f s e l f - c o n s c i o u s n e s s . Greenberg (1980) r e p o r t s t h a t the i n a b i l i t y o f p a t i e n t s t o "wear low-cut s l e e v e l e s s dresses o r bathing s u i t s leads t o f e e l i n g s o f s o c i a l i s o l a t i o n and i n s e c u r i t y " ( p . 1 ) . This r e c l u s i v e n e s s has negative i m p l i c a t i o n s f o r a woman's p e r c e p t i o n o f her body image and can l e a d t o poor f u t u r e adjustment ( A n s t i c e , 1970; Maguire, 1975).  In s p i t e o f p r e v a i l i n g p r a c t i s e , some women do not choose  to wear a p r o s t h e s i s . The f o l l o w i n g author expresses strong f e e l i n g s about the inadequacy o f any p r o s t h e t i c device r e p l a c i n g her l o s t b r e a s t and chose her own way o f a d j u s t i n g t o her changed body image.  Audrey  Lorde (1980) p o i g n a n t l y r e j e c t s the use o f a p r o s t h e s i s and the idea o f b r e a s t r e c o n s t r u c t i o n .  She s t a t e s t h a t adjustment t o her  a l t e r e d body image could only come from growth w i t h i n h e r s e l f . To imply t o a woman t h a t y e s , she can be the 'same' as before surgery, with the s k i l l f u l a p p l i c a t i o n o f a l i t t l e puff o f lambswool, and/or s i l i c o n e g e l , i s t o place an emphasis upon p r o s t h e s i s which encourages her not t o deal with h e r s e l f as p h y s i c a l l y and e m o t i o n a l l y r e a l , even though a l t e r e d and traumatized.  T h i s emphasis upon the cosmetic  a f t e r surgery r e i n f o r c e s t h i s s o c i e t y ' s stereotype o f women, that we a r e only what we look o r appear . . . with quick cosmetic reassurance, we a r e t o l d t h a t our f e e l i n g s a r e not  30 important, our appearance i s a l l , t h e sum t o t a l o f s e l f (Lorde, 1980, p. 5 6 ) . The option o f choosing to go without a p r o s t h e s i s i s not mentioned i n the general mastectomy l i t e r a t u r e and as such i s not l i k e l y to be condoned by the p r e v a i l i n g b e l i e f s o f medical (Lorde, 1980).  care  Lorde's d i f f e r e n t p o i n t o f view i s v a l i d and  conveys the importance o f a s s e s s i n g the meaning o f the b r e a s t l o s s and body image change from each woman's unique p e r s p e c t i v e . I t i s c l e a r t h a t f o r Lorde, f e e l i n g s about her body image represented an i n f l u e n t i a l f a c t o r i n terms o f her d e c i s i o n not to wear a p r o s t h e s i s . Carroll-Johnson  (1982) examined the impact o f body image as  i t r e l a t e d to women choosing o r r e f u s i n g b r e a s t However, she d i d not address the important  i s s u e o f the i n f l u e n c e  of the p r o s t h e s i s as a p o s s i b l e f a c t o r i n t h i s process.  reconstruction.  decision-making  The f o l l o w i n g s e c t i o n explores the r e l e v a n t l i t e r a t u r e  regarding b r e a s t r e c o n s t r u c t i o n i n order t o present f a c t o r s t h a t are l i k e l y to a f f e c t a woman's d e c i s i o n to c o n s i d e r  breast  reconstruction. Chronological Developments i n Breast  Reconstruction  The l i t e r a t u r e d e s c r i b e s some o f the h i s t o r i c a l developments in b r e a s t r e c o n s t r u c t i o n .  I t i s necessary to know the h i s t o r y o f  b r e a s t r e c o n s t r u c t i o n i n order t o put t h e recent changes i n t o context.  These changes a r e r e f l e c t e d i n s o c i e t y ' s i n c r e a s i n g  31 acceptance o f t h i s surgery.  I t i s i n t e r e s t i n g to note t h a t when  medical technology changes, the u n d e r l y i n g r a t i o n a l e a l s o changes to support i t . Letterman and Schurter (1978) c l a i m t h a t the three a v a i l a b l e methods o f b r e a s t augmentation and r e c o n s t r u c t i o n are " i n j e c t a b l e m a t e r i a l s , p r o s t h e t i c d e v i c e s , and the use o f autogenous t i s s u e t r a n s p l a n t a t i o n " ( p . 243). U n f o r t u n a t e l y , t i s s u e t r a n s p l a n t s and i n j e c t a b l e p a r a f f i n and s i l i c o n e produced too many c o m p l i c a t i o n s to make them worthwhile.  "The f i r s t implantable p r o s t h e t i c  devices appeared i n s o l i d form as handcarved i v o r y and g l a s s b a l l s " and were used u n t i l a preformed sponge made i t s debut i n 1951 (Walsh & S t e f a n s k i , 1983, p. 1381).  These devices were  r e j e c t e d by the p a t i e n t ' s body and caused s e r i o u s c o m p l i c a t i o n s . I t was  the development o f the safe s i l i c o n e p r o s t h e s i s i n the  1960's t h a t made s u c c e s s f u l b r e a s t r e c o n s t r u c t i o n p o s s i b l e i n the e a r l y 1970's (Walsh & S t e f a n s k i , 1983). Up u n t i l a decade ago, r e c o n s t r u c t i o n t y p i c a l l y i n v o l v e d m u l t i p l e procedures because s u r g i c a l techniques f o r s k i n f l a p s , needed f o r s u f f i c i e n t s k i n coverage, had not been p e r f e c t e d .  No  dependable, safe prostheses were a v a i l a b l e f o r r e s t o r a t i o n o f contour, and h o s p i t a l stays tended to be lengthy (Dowden, Horton & McCraw, 1979). A l l these f a c t o r s c o n t r i b u t e d to the r i s k s o f breast r e c o n s t r u c t i o n surgery, r e s u l t i n g i n l i m i t e d numbers o f such operations being performed.  The past 10 years have seen a  surge o f r e s e a r c h , new s u r g i c a l techniques, and a concomitant  32 growing p u b l i c awareness o f the b e n e f i t s o f b r e a s t reconstruction. The trend towards e a r l y b r e a s t cancer d e t e c t i o n , t h e growing w i l l i n g n e s s o f cancer surgeons t o perform l e s s than r a d i c a l breast surgery, recent developments i n p l a s t i c surgery and growing p u b l i c acceptance o f other types o f cosmetic  surgery  are h e l p i n g t o make b r e a s t r e c o n s t r u c t i o n more f e a s i b l e , c o s m e t i c a l l y p l e a s i n g , and l e s s expensive than i n the past (U.S. National Cancer I n s t i t u t e & O f f i c e o f Cancer Communications, 1979). The primary reason u n d e r l y i n g the i n c r e a s e i n the amount o f breast r e c o n s t r u c t i o n being performed medical technology.  i s the development o f  Advances i n technology c o i n c i d e d with a  s h i f t i n focus regarding mastectomy surgery.  Traditionally, a  r a d i c a l mastectomy was performed even i f a woman had a stage one b r e a s t tumour. The advent o f the m o d i f i e d r a d i c a l as the recommended c u r a t i v e surgery d u r i n g the 70's made b r e a s t r e c o n s t r u c t i o n s i m p l e r , as there was u s u a l l y no need f o r s k i n grafting.  Breast r e c o n s t r u c t i o n f o l l o w i n g mastectomy f o r  carcinoma i s t h e r e f o r e a r e l a t i v e l y recent development. 1976 there a r e few accounts o f t h i s s u r g i c a l procedure performed.  P r i o r to being  Mendel son (1980) s t a t e s ,  Twenty-five years ago a woman seeking r e c o n s t r u c t i o n o f the b r e a s t a f t e r mastectomy would, i n a l l l i k e l i h o o d , have been considered h i g h l y n e u r o t i c o r obsessed.  Such surgery was  33 r a r e l y performed, p a t i e n t s being dissuaded  from  r e c o n s t r u c t i o n , i f not on p s y c h o l o g i c a l grounds, then on t e c h n i c a l grounds (p. 517). The f o l l o w i n g statement shows how the change i n philosophy has affected public opinion.  Teimourian and Adham (1982) c i t e the  U.S. Department o f Health and Human S e r v i c e s (1980), "In a p u b l i c understanding survey on b r e a s t cancer . . .  i t was d i s c o v e r e d  that n e a r l y 4 out o f 10 women would c o n s i d e r b r e a s t r e c o n s t r u c t i o n a f t e r mastectomy" (p. 322). In g e n e r a l , most post-mastectomy women w i l l not be able t o have immediate r e c o n s t r u c t i o n o f t h e i r b r e a s t a t the time o f the mastectomy.  Reasons f o r t h i s i n c l u d e the p h y s i c a l shortage o r  v u l n e r a b i l i t y o f the c h e s t s k i n , the p o s s i b i l i t y o f r e c u r r e n c e , and the extensiveness o f the tumour, which may r e q u i r e r a d i a t i o n or chemotherapy.  The w a i t i n g p e r i o d between the mastectomy and  the r e c o n s t r u c t i o n u s u a l l y v a r i e s from three months t o over a year.  V T r a d i t i o n a l Versus H o l i s t i c P e r s p e c t i v e i n Breast Reconstruction Breast r e c o n s t r u c t i o n l i t e r a t u r e shows a marked s h i f t i n o r i e n t a t i o n , depending upon the time i t was w r i t t e n .  In t h e  1970's, the emphasis appeared t o be on the s u r g i c a l procedure and outcome o f the surgery.  A woman was viewed i n terms o f q u a l i t i e s  thought to make her a good r i s k f o r surgery.  Surgeons were  p a r t i c u l a r l y wary o f women who were devastated by t h e i r mastectomy and whose e x p e c t a t i o n s were considered too high t o be  34 s a t i s f i e d with a r e c o n s t r u c t e d b r e a s t .  T h i s p e r i o d i n time can  be r e f e r r e d to as the t r a d i t i o n a l p e r s p e c t i v e , which appears to c a t e g o r i z e the l i t e r a t u r e and research p u b l i s h e d i n the 1970's. However, there i s a l s o some l i t e r a t u r e published i n the 1980's that r e f l e c t s t h i s p e r s p e c t i v e . The h o l i s t i c p e r s p e c t i v e i s c h a r a c t e r i z e d by an a p p r e c i a t i o n of a woman's needs as a r e s u l t o f her cancer-mastectomy experience.  T h i s p s y c h o l o g i c a l o r i e n t a t i o n i s i n marked c o n t r a s t  with the p h y s i c a l , t e c h n i c a l approach i n the 1970's and appears from 1980 to 1985. The switch from a t r a d i t i o n a l t o a h o l i s t i c approach seems t o be r e l a t e d t o t h e ever i n c r e a s i n g t e c h n o l o g i c a l improvements i n b r e a s t surgery.  Again, while most o f the  l i t e r a t u r e on b r e a s t r e c o n s t r u c t i o n p u b l i s h e d i n the 1980's focuses on a h o l i s t i c approach, there i s not unanimity on t h i s topic.  To prevent c o n f u s i o n and t o place t h i s i n f o r m a t i o n i n a  c h r o n o l o g i c a l context, a d i s t i n c t i o n i s made between t r a d i t i o n a l and h o l i s t i c b r e a s t r e c o n s t r u c t i o n l i t e r a t u r e . Timing This s e c t i o n presents the t o p i c o f the recommended time i n t e r v a l between mastectomy and b r e a s t r e c o n s t r u c t i o n . The t r a d i t i o n a l r a t i o n a l e f o r d e l a y i n g r e c o n s t r u c t i v e surgery was expressed by Dinner and Peters  (1978):  A woman who has l i v e d with the r e s u l t s o f mastectomy w i l l be happier with l e s s than p e r f e c t r e s u l t s o f the r e c o n s t r u c t i o n compared with the shapeless a n t e r i o r chest wall t h a t she  35 l i v e d with f o l l o w i n g her i n i t i a l o p e r a t i o n .  For t h i s reason  we encourage a delay i n r e c o n s t r u c t i o n f o r as long as p o s s i b l e (p. 852). Doctors f e l t t h a t the few p a t i e n t s who had immediate r e c o n s t r u c t i o n a f t e r t h e i r mastectomy tended to s t i l l be i n a period o f d e n i a l . T h i s o f t e n r e s u l t e d i n them being s a t i s f i e d a t f i r s t but s u f f e r i n g disappointment  i n the long-term r e s u l t  because the r e c o n s t r u c t e d b r e a s t was not l i k e t h e i r l o s t b r e a s t . In the t r a d i t i o n a l approach, the timing t h a t was recommended f o r b r e a s t r e c o n s t r u c t i o n f o l l o w i n g mastectomy was a l s o d i c t a t e d by the length of time the s k i n took to h e a l , i n a d d i t i o n to the above p s y c h o l o g i c a l c o n s i d e r a t i o n s . In the past f i v e y e a r s , there i s evidence t h a t the p s y c h o l o g i c a l focus i s not only having an e f f e c t , but may a c t u a l l y be changing some o f the p r i n c i p l e s adhered to i n the past.  As a r e s u l t , the h o l i s t i c p e r s p e c t i v e views b r e a s t  r e c o n s t r u c t i o n as a p a r t of the r e h a b i l i t a t i v e process, and not p r i m a r i l y as an i n t e r v e n t i o n f o r women who cannot a d j u s t to the l o s s of t h e i r b r e a s t .  This h o l i s t i c perspective i s r e f l e c t e d in  the trend towards immediate b r e a s t r e c o n s t r u c t i o n a t the time of mastectomy.  The s u b j e c t o f immediate b r e a s t r e c o n s t r u c t i o n w i l l  be explored a t l e n g t h i n a subsequent s e c t i o n .  Interestingly, a  recent a r t i c l e by Dinner and Dowden (1984), showed t h a t Dinner, who has been r e f e r r e d t o , r e f l e c t e d a s h i f t i n h i s t r a d i t i o n a l t h i n k i n g to a more h o l i s t i c approach.  "We would never deny a  36 p a t i e n t immediate r e c o n s t r u c t i o n i n order t o make her l i v e with her deformity f o r a p e r i o d o f time so t h a t she a p p r e c i a t e s the r e c o n s t r u c t i o n more" (p. 8 1 0 ) . Issues i n Breast  Reconstruction  Results o f surgery vary from p a t i e n t t o p a t i e n t .  Plastic  surgeons emphasize t h a t , a t best, a woman w i l l appear normal i n a bathing s u i t o r b r a .  They c a u t i o n p a t i e n t s t h a t the b r e a s t mound  w i l l not look as natural as a normal b r e a s t when they a r e nude (Graham & Turner, 1981; Snyderman, 1976).  During the  c o n s u l t a t i o n with the surgeon, the post-mastectomy woman i s t y p i c a l l y shown p i c t u r e s o f other women who have undergone r e c o n s t r u c t i o n (Bostwick, 1980).  1983; Goin & Goin, 1981; Greenberg,  These p i c t u r e s d e p i c t women who have had f a i r , average,  or good r e s u l t s i n order t o show them the range o f r e a l i s t i c possibilities.  Hunt (1981) recommends t h a t h i s p r o s p e c t i v e  c l i e n t s a l s o t a l k t o p a t i e n t s who have had both f a i r and good reconstructive results. Current medical  l i t e r a t u r e s t r e s s e s the s i g n i f i c a n c e o f a  p o s i t i v e a t t i t u d e i n women who undergo b r e a s t  reconstructive  surgery i n p r e d i c t i n g t h e i r adjustment t o the r e c o n s t r u c t e d breast ( C l i f f o r d , 1979; Cocke, 1977; Goin & Goin, 1981; Graham & Turner, 1981). The c o n s u l t a t i o n p e r i o d between surgeon and p a t i e n t focuses on b u i l d i n g r a p p o r t , which f a c i l i t a t e s the p a t i e n t becoming well-informed procedure.  about the r e c o n s t r u c t i o n  37 The i n i t i a l i n t e r v i e w between the p a t i e n t and the r e c o n s t r u c t i v e surgeon a f t e r mastectomy should e s t a b l i s h l i n e s o f communication t h a t transcend d i s c u s s i o n o f the obvious, p h y s i c a l deformity and allow the surgeon t o develop i n s i g h t i n t o the p a t i e n t ' s emotional s t a t u s , her expectations from surgery and h i s chances o f meeting her expectations  . . . but i t i s o f t e n h e l p f u l t o begin by  asking the p a t i e n t what she wants t o t a l k about and a l l o w i n g her the freedom t o share her f e e l i n g s and expectations (Bostwick,  1983, p. 291).  Goin & Goin (1981) a l s o acknowledge the importance o f r e c o g n i z i n g t h a t the post-mastectomy p a t i e n t may be d e a l i n g with a range o f intense f e e l i n g s such as "depression, wounded self-esteem, decreased f e e l i n g s o f f e m i n i n i t y , d e n i a l o f b r e a s t l o s s , anger a t surgeons, and f e a r o f r e c u r r e n t cancer" ( p . 176). They advocate e x p l o r i n g these i s s u e s with each p a t i e n t .  Thorough  preoperative planning has a p o s i t i v e i n f l u e n c e on the f i n a l surgery. Ward (1981) emphatically i l l u s t r a t e s the s i g n i f i c a n c e o f a woman's a t t i t u d e and a s s o c i a t e d expectations i n determining her acceptance o r r e j e c t i o n o f b r e a s t  reconstruction.  A woman can be emotionally and p s y c h o l o g i c a l l y u p l i f t e d a f t e r a t e c h n i c a l l y incompetent b r e a s t  reconstruction.  Another woman can be devastated a f t e r a p e r f e c t l y executed r e c o n s t r u c t i o n when she r e a l i z e s the p r i c e she has paid i n  38 terms o f added s c a r s .  In the eyes o f the f i r s t woman her  new b r e a s t i s b e a u t i f u l and i n the eyes o f the second woman i t i s hideous ( p . 127). Considering the amount o f m o t i v a t i o n needed by r e c o n s t r u c t i o n c l i e n t s , i t i s not s u r p r i s i n g t h a t the a c t u a l incidence o f b r e a s t r e c o n s t r u c t i o n s being c a r r i e d o u t i s low. Rutledge (1982) and Bostwick (1983) c l a i m t h a t only f i v e percent of mastectomy p a t i e n t s undergo b r e a s t r e c o n s t r u c t i o n .  "Only 25  percent o f those who express an i n i t i a l i n t e r e s t i n undergoing r e c o n s t r u c t i v e surgery w i l l e v e n t u a l l y request i t " (Graham & Turner, 1981, p. 581).  The f o l l o w i n g p l a s t i c surgeon expresses a  t r a d i t i o n a l view t o e x p l a i n t h e above phenomenon.  Snyderman  (1976) s t a t e s t h a t Most women who come t o d i s c u s s b r e a s t r e c o n s t r u c t i o n w i l l e l e c t not t o undergo the surgery a f t e r having the procedure and the r e s u l t s c a r e f u l l y e x p l a i n e d .  Unlike the time o f  t h e i r e x c i s i o n a l surgery, when they a r e given l i t t l e c h o i c e , now they f e e l t h a t t h e i r d e s t i n y i s i n t h e i r own hands (p. 466). He f e e l s t h a t i f a l l mastectomy p a t i e n t s were reassured t h a t the emotional  trauma they have experienced was normal, i n a d d i t i o n t o  being informed about r e c o n s t r u c t i o n , most o f them would decide a g a i n s t t h i s e x t r a surgery. Factors Involved i n Decision-Making Decision-making  theory may be useful i n examining and  [  39 o r g a n i z i n g information about f a c t o r s t h a t a r e p e r t i n e n t t o b r e a s t reconstruction.  The f o l l o w i n g l i t e r a t u r e explores f a c t o r s t h a t  may be i n f l u e n t i a l i n the b r e a s t r e c o n s t r u c t i o n process.  decision-making  I n d i v i d u a l f a c t o r s l i k e l y a c t t o e i t h e r deter a woman  from o r encourage a woman towards the idea o f b r e a s t reconstruction.  However, the i n d i v i d u a l i t y o f each woman w i l l  u l t i m a t e l y determine what combination o f f a c t o r s w i l l be r e s p o n s i b l e f o r her d e c i s i o n t o choose o r d e c l i n e r e c o n s t r u c t i o n . Controversy decision-making  about the importance o f d i f f e r e n t f a c t o r s i n the process abounds i n the l i t e r a t u r e .  T h i s lack o f  agreement among h e a l t h p r o f e s s i o n a l s may be i n d i c a t i v e o f a c r i t i c a l l a c k o f research-based f a c t o r plays i n t h i s process. f a c t o r s presented  information on the r o l e each One cannot assume t h a t a l l o f t h e  i n t h i s review a r e r e l e v a n t t o each woman who  considers r e c o n s t r u c t i o n .  These f a c t o r s a r e presented only as  g u i d e l i n e s as t o what may be important  i n the decision-making.  Only the i n d i v i d u a l can a c c u r a t e l y assess the degree o f importance each f a c t o r s holds i n her own decision-making  process.  Goin and Goin (1981) s t a t e t h a t the f o l l o w i n g f e e l i n g s may act as f a c t o r s t o prevent o r postpone a woman's d e c i s i o n t o undergo b r e a s t r e c o n s t r u c t i o n .  "For some, f e a r s o f cancer  recurrence, f e e l i n g s o f g u i l t and v a n i t y , and anxiety about another operation w i l l i n t e r f e r e . Others w i l l delay because they a c t u a l l y no longer experience r e c o n s t r u c t i o n " ( p . 175).  the emotional need f o r  Another i n h i b i t i n g f a c t o r i m p l i c a t e d  40 by both t r a d i t i o n a l and h o l i s t i c viewpoints i s a dearth o f consumer knowledge about the p o s s i b i l i t y o f b r e a s t r e c o n s t r u c t i o n (Cocke, 1977; Rutledge, 1982).  T h i s could be due t o a general  l a c k o f awareness combined with a negative a t t i t u d e among some general surgeons (Snyderman, 1976).  Surgeons who do not support  breast r e c o n s t r u c t i o n may adversely a f f e c t the p s y c h o l o g i c a l adjustment o f some p a t i e n t s .  They may i n s i s t upon a t h r e e - t o  f i v e - y e a r w a i t i n g p e r i o d o r simply t e l l the p a t i e n t t h a t she i s not a r e c o n s t r u c t i o n candidate without r e f e r r i n g her t o a p l a s t i c surgeon f o r c o n s u l t a t i o n (Goin & Goin, 1981; Snyderman, 1976). The surgeon's primary f e a r s a r e t h a t b r e a s t r e c o n s t r u c t i o n surgery may a c t i v a t e a l o c a l recurrence and t h a t the s i l i c o n e implants may mask a recurrence i f i t developed.  These  t r a d i t i o n a l medical f e a r s a r e d i s s i p a t i n g somewhat i n the l i g h t of recent medical evidence showing t h a t immediate b r e a s t r e c o n s t r u c t i o n does not have these e f f e c t s (Bostwick, 1983; Bostwick & Berger, 1984). Many women g i v e up i n d e s p a i r o r a r e too t i m i d t o seek o u t a second surgeon's o p i n i o n .  Snyderman (1976) s t a t e s t h a t  a d d i t i o n a l education would d i s p e l much o f the general surgeons' hesitancy about recommending b r e a s t r e c o n s t r u c t i o n t o t h e i r patients. Bostwick (1983) claims t h a t the women who seek r e c o n s t r u c t i o n have a tendency t o focus more on p h y s i c a l appearance and be more d i s t r a u g h t by the mastectomy deformity.  41 These women a r e , perhaps, more devastated by the l o s s o f t h e i r breast than by the t h r e a t o f cancer (Needleman, 1979; Timothy, 1977). Women who p e r s i s t e n t l y seek and i n s i s t on r e c o n s t r u c t i o n may be the ones . . . we have t o be most c a r e f u l o f . . . Because o f t h e i r i n t e n s e i n t e r e s t i n s e l f - i m a g e and b r e a s t r e c o n s t r u c t i o n , t h i s group . . . may expect more o f the r e c o n s t r u c t i v e surgeon and look t o him t o make them 'whole' again (Cocke, 1977, p. 1 2 ) . Goin and Goin (1981) r e p o r t t h a t "there was no evidence t h a t these women were p a r t i c u l a r l y 'breast c o n s c i o u s ' before mastectomy. Two o f them admitted t a k i n g p a r t i c u l a r p r i d e i n the shape and appearance o f t h e i r b r e a s t s , but the remainder were s u r p r i s e d by the f e e l i n g s o f d e v a s t a t i o n which f o l l o w e d t h e i r b r e a s t amputations" ( p . 184). The l a y l i t e r a t u r e s t r e s s e s t h a t a woman undergoes r e c o n s t r u c t i o n f o r mainly r e s t o r a t i v e reasons (Kushner, 1982; Zalon, 1978).  T h i s process o f wanting t o be 'whole' i s t i e d i n  with d e s i r i n g t o look normal as they once d i d . Timothy (1977) asks "where i s the v a n i t y i n p r e f e r r i n g t o be l i k e other women?, Where i s the v a n i t y i n p r e f e r r i n g t o be the way one was?" (p. 132).  "The concern o f these women about the i n t e g r i t y o f  t h e i r bodies i s not n a r c i s s i s t i c , immature, o r n e u r o t i c , but as natural and a p p r o p r i a t e as another person's concern f o r the l o s s of an eye o r an arm" (Thomas & Yates, 1977).  In Harvey (1980),  42 Wade c i t e s a nurse as saying "the o l d - f a s h i o n e d concept t h a t women seek t h i s surgery because they cannot a d j u s t p s y c h o l o g i c a l l y t o t h e i r p l i g h t i s outrageous. feel and look normal" ( p . 100).  People want t o  The emotional i n t e n s i t y o f the  above statements r e f l e c t t h e r e a c t i o n s o f women who have f e l t compelled t o defend and j u s t i f y t h e i r d e c i s i o n t o undergo reconstruction. Zalon (1978) f e e l s s t r o n g l y t h a t b r e a s t r e c o n s t r u c t i o n should be a v a i l a b l e f o r every mastectomy p a t i e n t i f i t meets her physical and emotional  needs.  She s t a t e s t h a t " f o r the many  thousands o f women who f e e l deprived and devalued as a person and as a woman by the mastectomies they have undergone . . . I b e l i e v e r e c o n s t r u c t i o n can r e s t o r e t h e l o n g e d - f o r sense o f wholeness" ( p . 136).  "I f e e l my body i s back together a g a i n . I t  f e e l s natural and normal which i s a f e e l i n g t h a t I thought I would never again experience" (Needleman, 1979, p. 7 5 ) . Hugo (1977) c i t e s a p a t i e n t who wrote a l e t t e r t o him regarding t h e powerful sense o f wholeness t h a t was r e s t o r e d t o her through b r e a s t r e c o n s t r u c t i o n .  "How can I ever thank you  enough f o r the superb r e c o n s t r u c t i v e surgery you d i d , l i t e r a l l y without pain o r inconvenience a t the time; l a t e r followed by a q u i e t , peaceful s t a t e o f mind, a s e l f - a s s u r a n c e i n becoming a complete woman again" ( p . 128). Breast Reconstruction  Research  The main t h r u s t o f research d e a l i n g with b r e a s t  43 r e c o n s t r u c t i o n was developed by surgeons p r i o r t o the 1980's. As such, the m a j o r i t y o f i t was r e l a t e d to the actual s u r g i c a l techniques used to e f f e c t the b r e a s t mound and the n i p p l e . As mentioned p r e v i o u s l y , the i n t e r e s t o f p l a s t i c surgeons has s h i f t e d from the t e c h n i c a l to more o f a p s y c h o l o g i c a l p e r s p e c t i v e since 1980 (Bostwick, 1983; Goin & Goin, 1981).  This r i s e i n  concern r e g a r d i n g the p s y c h o s o c i a l adjustment o f the post-mastectomy woman who d e s i r e s b r e a s t r e c o n s t r u c t i o n appears to be p a r a l l e l e d by refinement o f the s u r g i c a l procedures and i n n o v a t i v e techniques t h a t improve upon the a e s t h e t i c r e s u l t o f the r e c o n s t r u c t e d b r e a s t .  T h i s movement away from the  t r a d i t i o n a l focus t o a more h o l i s t i c p e r s p e c t i v e was a s s i s t e d by input from p s y c h o l o g i s t s and p s y c h i a t r i s t s (Goin & Goin, 1981; Rowland, 1984). Nursing l i t e r a t u r e regarding b r e a s t r e c o n s t r u c t i o n emerged in the 1970's, with a focus on e x p l a i n i n g the t e c h n i c a l s u r g i c a l techniques used t o develop a b r e a s t mound.  L i t e r a t u r e reviews  were p r e v a l e n t d u r i n g t h i s p e r i o d and a c t u a l nursing r e s e a r c h input was extremely l i m i t e d . T h i s p a t t e r n has continued i n t o the 1980's and the only source o f research on b r e a s t r e c o n s t r u c t i o n to date i s an unpublished Master's t h e s i s by C a r r o l l - J o h n s o n (1982).  Nursing l i t e r a t u r e and research i n the 1980's continues  to emphasize the t e c h n i c a l aspects o f surgery r a t h e r than psychological issues.  In g e n e r a l , nursing research tends to deal  f a r more e x t e n s i v e l y with mastectomy than with b r e a s t  44 reconstruction. The f o l l o w i n g s e c t i o n r e p o r t s the f i n d i n g s o f c u r r e n t research i n b r e a s t r e c o n s t r u c t i o n from other d i s c i p l i n e s . Although a v a r i e t y o f b r e a s t r e c o n s t r u c t i o n research e x i s t s , much of i t l a c k s coherence and as a r e s u l t the f i n d i n g s a r e d i f f i c u l t to i n t e r p r e t .  There a r e p i t f a l l s i n v o l v e d i n p r e s e n t i n g an  overview o f a l l t h e a v a i l a b l e s t u d i e s , as many o f them c o n t a i n methodological understanding  flaws t h a t s e r i o u s l y a f f e c t t h e i r u s e f u l n e s s i n the decision-making  breast r e c o n s t r u c t i o n .  process o f women c o n s i d e r i n g  Therefore, only those s t u d i e s t h a t have  relevance t o the f a c t o r s t h a t i n f l u e n c e women making the d e c i s i o n to have breast r e c o n s t r u c t i o n a r e i n c l u d e d .  A critical  stance  has been taken i n order t o e f f e c t i v e l y assess the a p p l i c a b i l i t y of the research presented.  Much o f t h i s research deals with the  t o p i c o f immediate b r e a s t r e c o n s t r u c t i o n and as such i s c h a r a c t e r i s t i c o f the h o l i s t i c focus t h a t now predominates over the t r a d i t i o n a l approach. Research shows t h a t undergoing immediate r e c o n s t r u c t i o n can markedly reduce d e b i l i t a t i n g c o m p l i c a t i o n s i n some post-mastectomy women (Dean & Chetty, 1983; Stevens e t a l . , 1984).  Recent research on immediate b r e a s t r e c o n s t r u c t i o n  f o l l o w i n g mastectomy c o n t r a d i c t s the b e l i e f t h a t a woman needs a w a i t i n g p e r i o d before she i s able t o accept her r e c o n s t r u c t e d breast (Dean & Chetty, 1983; Logan, 1980; Schain & w e l l i s c h , Pasnau & Landsverk, 1985; Stevens e t a l . , 1984).  Logan (1980)  45 has i n s e r t e d prostheses a t the time o f mastectomy i n approximately  50 p a t i e n t s .  He r e p o r t s t h a t t h e s e p a t i e n t s a r e  l e s s depressed than those who have had only a mastectomy. However, t h i s f i n d i n g i s unsubstantiated by r e s e a r c h , as the author d i d not use any o b j e c t i v e method o f e v a l u a t i n g h i s p a t i e n t s ' l e v e l o f depression before o r a f t e r r e c o n s t r u c t i o n . Dean and Chetty's (1983) study i n c l u d e d 64 women with operable b r e a s t cancer who were randomly assigned t o two groups, one which underwent immediate b r e a s t r e c o n s t r u c t i o n and a c o n t r o l group t o whom r e c o n s t r u c t i o n was o f f e r e d a year l a t e r . A l l immediate r e c o n s t r u c t i o n p a t i e n t s were p s y c h o l o g i c a l l y evaluated a f t e r 3 months and then again i n 12 months.  The r e s e a r c h e r s  found t h a t a much higher percentage o f women i n the immediate implant group had returned t o work three months a f t e r surgery than i n the c o n t r o l group, "18 o f 27 v s . 12 o f 26" ( p . 460). The main f i n d i n g revealed a r e d u c t i o n i n " p s y c h i a t r i c m o r b i d i t y a t 3 months a f t e r o p e r a t i o n predominantly marriages.  i n women with unhappy  This group o f women g e n e r a l l y have a high p s y c h i a t r i c  morbidity a f t e r mastectomy . . . and major b r e a s t r e c o n s t r u c t i o n appears t o prevent much o f the m o r b i d i t y " (p. 461). Of the 31 women i n the c o n t r o l group, only 6 underwent r e c o n s t r u c t i o n 12 months a f t e r mastectomy, which the researchers think i s due t o t h e i r coming t o terms with t h e i r p h y s i c a l appearance (Dean & Chetty, 1983). Stevens e t a l . (1984) s t u d i e d 13 women who s e l e c t e d  46 immediate b r e a s t r e c o n s t r u c t i o n and 12 women who delayed r e c o n s t r u c t i o n 3 months t o 8 years a f t e r t h e i r mastectomy.  Their  f i n d i n g s i n d i c a t e d t h a t the women who underwent immediate r e c o n s t r u c t i o n f e l t an e l e v a t i o n i n mood and a l e s s e n i n g o f depressive symptoms f o l l o w i n g r e c o n s t r u c t i o n .  In c o n t r a s t ,  " s e v e n t y - f i v e percent (9 p a t i e n t s ) o f t h e group with  delayed  r e c o n s t r u c t i o n r e p o r t e d f e e l i n g 'deformed' a f t e r mastectomy. None o f the group with immediate r e c o n s t r u c t i o n had such f e e l i n g s " (p. 622). The authors s t a t e d t h a t " a l l o f t h e immediate r e c o n s t r u c t i o n p a t i e n t s reported a r e t u r n t o t h e i r preoperative sexual f u n c t i o n i n g except t h r e e , who r e c e i v e d chemotherapy and experienced a l o s s o f l i b i d o e a r l y i n t h e i r chemotherapeutic treatment.  F i f t y - e i g h t percent (7 p a t i e n t s ) o f  the delayed r e c o n s t r u c t i o n group reported an a l t e r a t i o n i n t h e i r sexual f u n c t i o n i n g a f t e r mastectomy and before r e c o n s t r u c t i o n " (p. 623). A study conducted by Schain, W e l l i s c h , Pasnau, and Landsverk (1985) assessed the p s y c h o l o g i c a l adjustment o f post-mastectomy women who had immediate versus delayed r e c o n s t r u c t i o n . S i x t y - t h r e e women were i n c l u d e d i n the study and were grouped according t o three c a t e g o r i e s ; those women who underwent immediate r e c o n s t r u c t i o n , those who underwent r e c o n s t r u c t i o n l e s s than a year a f t e r mastectomy, and those whose r e c o n s t r u c t i o n was delayed more than a y e a r .  They were assessed using a  q u e s t i o n n a i r e and several assessment instruments.  The r e s u l t s o f  47 t h i s study supported the previous research c i t e d i n t h i s discussion. These data showed t h a t women who underwent r e c o n s t r u c t i o n e i t h e r immediately  o r w i t h i n one year a f t e r mastectomy were  s i g n i f i c a n t l y l e s s l i k e l y to r e p o r t more extreme r e a c t i o n s of d i s t r e s s about the f i r s t viewing o f t h e i r mastectomy than those women who had b r e a s t r e c o n s t r u c t i o n more than a year a f t e r t h e i r o r i g i n a l surgery (p. 4 2 ) . Although these s t u d i e s have shortcomings,  i n c l u d i n g small  subject numbers and a l a r g e amount o f r e t r o s p e c t i v e data, they lend strong support t o the p s y c h o l o g i c a l b e n e f i t o f immediate breast r e c o n s t r u c t i o n f o r some women (Stevens e t a l . , 1984). Stevens e t a l . (1984) d i s p u t e the p r e v i o u s l y held t r a d i t i o n a l b e l i e f t h a t time i s r e q u i r e d a f t e r mastectomy t o a d j u s t t o the m i s s i n g b r e a s t before r e c o n s t r u c t i o n can even be considered. There has been concern i n the past t h a t immediate b r e a s t r e c o n s t r u c t i o n would somehow a l t e r o r impede the process o f mourning and p s y c h o l o g i c a l adaptation t o the l o s s o f the breast.  Our r e s u l t s suggest t h a t immediate b r e a s t  r e c o n s t r u c t i o n does not a l t e r t h i s process and t h a t the mourning f o r t h e b r e a s t l o s s begins i n both groups even before surgery with the a n t i c i p a t i o n o f the b r e a s t l o s s (p. 625). This research i n v o l v i n g immediate b r e a s t r e c o n s t r u c t i o n has  48 important p s y c h o l o g i c a l r a m i f i c a t i o n s f o r women who w i l l be confronted with the need f o r a mastectomy.  One-step implant  surgery i s l i k e l y to s i g n i f i c a n t l y reduce the r e s u l t i n g o v e r a l l trauma f o r some women. The remainder o f r e p o r t e d r e s e a r c h f i n d i n g s deal with f a c t o r s t h a t appear t o i n f l u e n c e a woman's d e c i s i o n t o c o n s i d e r b r e a s t r e c o n s t r u c t i o n . T h i s s e c t i o n provides some s u b s t a n t i a t e d evidence o f the v a l i d i t y o f the r o l e c e r t a i n f a c t o r s p l a y . The impact o f age and subsequent stage o f p s y c h o s o c i a l development a r e f a c t o r s surrounded by c o n t r o v e r s y .  The f o l l o w i n g  authors propose e x p l a n a t i o n s regarding how these f a c t o r s r e l a t e to post-mastectomy  adjustment.  Maguire (1975) claims t h a t younger women who l e d an a c t i v e sex l i f e and whose b r e a s t s represented a t t r a c t i v e n e s s t o them a r e at r i s k f o r poorer adjustment a f t e r a mastectomy.  On the other  hand, Goin and Goin (1981) a r e o f the o p i n i o n t h a t women who a r e c l o s e t o menopause o r e x p e r i e n c i n g menopause may be a t a g r e a t e r r i s k f o r having an i n t e n s e post-mastectomy c r i s i s .  This reaction  may be caused by t h e i r awareness t h a t youth i s p a s s i n g , s i g n i f y i n g a l a c k o f time l e f t f o r f u l f i l l m e n t o f e a r l i e r p l a n s . Others maintain t h a t adjustment  depends upon the s i g n i f i c a n c e o f  the b r e a s t t o each woman and t h a t age i s not a s i g n i f i c a n t f a c t o r in the adaptation process (Berger & Bostwick, 1984; S i l b e r f a r b , 1977-78). I found t h a t young women care d e s p e r a t e l y about being  49 o b l i g e d t o l i v e with only one b r e a s t . . . but I found t h a t married women care as much, and s i n g l e women care as much, and o l d e r women care as much. T h e i r r e a c t i o n s were a l l similar.  Where the b r e a s t i s concerned, the emotions a r e so  primal t h a t there a r e no c a t e g o r i e s (Timothy, 1977, p. 132). The above authors base t h e i r o p i n i o n s on i n t e r v i e w s o f small samples o f women and c o n t r o l groups were not i n c l u d e d .  While  these f i n d i n g s a r e i n t e r e s t i n g and should be i n v e s t i g a t e d s c i e n t i f i c a l l y , they g i v e no c l e a r d i r e c t i o n regarding the importance o f a p a r t i c u l a r age when i t comes t o d e c i d i n g about breast r e c o n s t r u c t i o n . S o c i e t y ' s preoccupation with youth tends t o d i s c r i m i n a t e a g a i n s t post-menopausal women who d e s i r e r e c o n s t r u c t i o n . Stereotyped myths support the notion t h a t middle-aged and e l d e r l y women l o s e i n t e r e s t i n s e x u a l i t y and the d e s i r e t o look attractive.  Timothy (1977) poignantly d e s c r i b e s an experience o f  one woman who phoned a community support s e r v i c e worker t o request support p r i o r t o her mastectomy.  She was asked her age  and when she r e p l i e d t h a t she was f i f t y - t w o he asked, "Then why do you care?  You're n o t going t o seduce anyone" ( p . 132).  Given t h i s p r e v a l e n t a t t i t u d e , i t i s not s u r p r i s i n g t h a t women i n t h e i r f i f t i e s and s i x t i e s might be r e l u c t a n t t o request breast r e c o n s t r u c t i o n because o f f e a r o f being c r i t i c i z e d f o r their vanity.  The f a c t t h a t b r e a s t r e c o n s t r u c t i o n i s o f f e r e d t o  t h i s age group l e s s f r e q u e n t l y than women i n t h e i r 20s, 30s, and  50 40s i n d i c a t e s t h a t s o c i e t a l p r e j u d i c e may be an important f a c t o r in the r e l u c t a n c e o f women over 50 to c o n s i d e r b r e a s t reconstruction.  R e l a t i v e s and well-meaning f r i e n d s may a l s o  pressure the b r e a s t r e c o n s t r u c t i o n c a n d i d a t e , saying t h a t they accept her the way she i s . They cannot understand why she would want to s u b j e c t h e r s e l f to more surgery j u s t to get another breast (Goin & Goin, 1981; Timothy, 1977; Zalon, 1978). Goin and Goin (1981) r e p o r t a study t h a t explored husbands' a t t i t u d e s towards b r e a s t r e c o n s t r u c t i o n . The f i n d i n g s have i m p l i c a t i o n s f o r the husbands' a b i l i t i e s to g i v e t h e i r wives needed support. The men i n t h i s study were well-educated, i n r e l a t i v e l y high income groups, and l i v e d i n a m e t r o p o l i t a n area (Los Angeles) where p l a s t i c surgery i s commonplace.  Nonetheless,  a l a r g e p r o p o r t i o n o f the husbands were q u i t e negative about the idea o f b r e a s t r e c o n s t r u c t i o n . They f e l t t h a t they (and presumably t h e i r wives) had had enough o f d o c t o r s , h o s p i t a l s , and s u r g i c a l o p e r a t i o n s .  Another group f e l t they  would give i n i f t h e i r wives were very s t r o n g l y motivated to have t h e i r b r e a s t s r e c o n s t r u c t e d , but showed l i t t l e spontaneous i n t e r e s t themselves.  Only a few men s t r o n g l y  favored b r e a s t r e c o n s t r u c t i o n f o r t h e i r wives (p. 171). Timothy (1977) asked numerous men how s i g n i f i c a n t i t would be to them i f t h e i r p a r t n e r were to have b r e a s t r e c o n s t r u c t i o n . They responded almost unanimously t h a t she should go ahead i f i t  51 was important f o r her b u t not t o do i t f o r t h e i r sakes.  Hunt  (1981) reports t h a t " i t i s rare f o r a husband t o urge reconstruction.  I t i s even r a r e r f o r a ' s i g n i f i c a n t other* t o  urge r e c o n s t r u c t i o n " (p. 4 ) .  Rowland's (1984,  unpublished)  r e s u l t s show t h a t "60% o f women s t a t e d t h a t t h e i r husband o r s i g n i f i c a n t other was n e u t r a l o r even opposed t o her [ s i c ] d e s i r e f o r r e c o n s t r u c t i o n — d e s p i t e having been s u p p o r t i v e (85%) f o l l o w i n g mastectomy" (p. 8 ) . decision-making  These statements suggest t h a t the  process may be based more on the personal  choice  of each woman r a t h e r than on t h e i n f l u e n c e o f s i g n i f i c a n t o t h e r s . C l i f f o r d (1979) r e p o r t s t h a t no one knows i n any s c i e n t i f i c sense what impels a woman's search f o r r e s t o r a t i o n o r whether i t i s more l i k e l y t o be the woman with "impoverished  i n n e r resources  or the s t r o n g e r , more a s s e r t i v e woman who seeks b r e a s t r e c o n s t r u c t i o n " (p. 22).  He interviewed s i x t y - f i v e women i n the  process o f having r e c o n s t r u c t i o n t o determine t h e i r m o t i v a t i o n . The women i n t h i s study appeared t o be r e a l i t y o r i e n t e d and the d r i v e f o r r e s t i t u t i o n could be considered an e f f o r t t o achieve a normalcy through the r e j e c t i o n o f a p h y s i c a l d i s a b i l i t y t h a t may be remedial.  Women d i d not seek  r e s t i t u t i o n , f o r the most p a r t , t o s o l v e an i n n e r problem o r emotional  turmoil.  The d r i v e was c l e a r l y r e s t o r a t i v e  ( C l i f f o r d , 1979, p. 3 2 ) . The research f i n d i n g s from C l i f f o r d ' s study a r e v a l u a b l e i n t h a t they represent one o f the f i r s t attempts t o explore the reasons  52 women chose b r e a s t r e c o n s t r u c t i o n from the women's p o i n t o f view.  The f i n d i n g s a l s o c a s t c o n s i d e r a b l e doubt on the  t r a d i t i o n a l assumptions t h a t these women were p s y c h o l o g i c a l l y traumatized.  C a r r o l l - J o h n s o n ' s research supports the above  f i n d i n g s t h a t women who c o n s i d e r b r e a s t r e c o n s t r u c t i o n a r e no more v u l n e r a b l e t o emotional d i s t r e s s and low s e l f - e s t e e m than other post-mastectomy women. She w r i t e s "even though the reasons f o r r e c o n s t r u c t i o n a r e p r i m a r i l y p s y c h o l o g i c a l (to r e s t o r e body image, c o n f i d e n c e , and the sense o f being 'whole a g a i n ' ) , no s t u d i e s t o date have been done t o evaluate any o f these a t t r i b u t e s i n women who seek t h i s o p e r a t i o n " (p. 2 ) . C a r r o l l - J o h n s o n ' s (1982) unpublished research was aimed a t d i s c o v e r i n g whether o r not a l i n k e x i s t e d between body image scores and the d e c i s i o n t o undergo b r e a s t r e c o n s t r u c t i o n . She matched 13 b r e a s t r e c o n s t r u c t i o n candidates with a s i m i l a r group of 12 post-mastectomy p a t i e n t s who chose not t o undergo b r e a s t reconstruction.  Her r e s u l t s " r e v e a l e d no s i g n i f i c a n t d i f f e r e n c e  between the two groups with r e s p e c t t o body image, gender r o l e d e f i n i t i o n ( m a s c u l i n i t y / f e m i n i n i t y ) and self-esteem" ( p . 5 6 ) . Both groups o f women were found t o score p o s i t i v e l y with r e s p e c t to body image.  C a r r o l l - J o h n s o n r e p o r t s the i n t e r e s t i n g f i n d i n g  that with regard t o confidence i n t h e i r general a b i l i t i e s "85% o f the b r e a s t r e c o n s t r u c t i o n candidates f e l t very o r c o n s i d e r a b l y c o n f i d e n t while only 58% o f the c o n t r o l s u b j e c t s r a t e d as high" (p. 47).  themselves  U n f o r t u n a t e l y , t h e sample s i z e i n her study  53 was very small which makes i t d i f f i c u l t t o g e n e r a l i z e t o the l a r g e r p o p u l a t i o n o f post-mastectomy women who c o n s i d e r b r e a s t reconstruction. A l a r g e r research study i n v o l v i n g 83 women who underwent b r e a s t r e c o n s t r u c t i o n was conducted by Rowland (1984).  This  study sought t o e x p l a i n women's reasons f o r c o n s i d e r i n g r e c o n s t r u c t i o n , t h e i r e x p e c t a t i o n s o f the r e c o n s t r u c t i v e surgery and t h e i r response t o r e c o n s t r u c t i o n .  Rowland's r e s u l t s  demonstrated t h a t "women seeking r e c o n s t r u c t i v e surgery were r e a l i s t i c i n t h e i r e x p e c t a t i o n s , h i g h l y motivated, p s y c h o l o g i c a l l y w e l l - a d j u s t e d and high f u n c t i o n i n g , much l i k e t h e i r n o n r e c o n s t r u c t i v e peers" (p. 9 ) .  Rowland's r e s u l t s  supported C l i f f o r d ' s f i n d i n g s , as she d i s c o v e r e d t h a t t h e most f r e q u e n t l y s t a t e d reasons f o r choosing t o undergo r e c o n s t r u c t i o n were t o "1) to be r i d o f the p r o s t h e s i s , 2) t o 'feel whole again', and 3) t o r e s t o r e symmetry and thus  decrease  s e l f - c o n s c i o u s n e s s about appearance" ( p . 9 ) .  Rowland's study  appears t o be the most r i g o r o u s t o date i n terms o f comprehensive, accurate measurement techniques.  The p a t i e n t s  were evaluated by both a c l i n i c a l i n t e r v i e w and a d e t a i l e d s e l f - r e p o r t q u e s t i o n n a i r e which: assessed the woman's past p s y c h i a t r i c h i s t o r y , degree o f present symptomatology and c u r r e n t l e v e l o f f u n c t i o n i n g , and adaptation t o mastectomy, i n c l u d i n g sexual adjustment psychosexual  . ..  development, c u r r e n t l e v e l o f p s y c h o l o g i c a l and  54 s o c i a l f u n c t i o n . . . use o f and s a t i s f a c t i o n with b r e a s t prostheses, and knowledge o f , e x p e c t a t i o n s o f , and m o t i v a t i o n f o r r e c o n s t r u c t i o n (p. 8 ) . Both pre- and p o s t - o p e r a t i v e e v a l u a t i o n s were c a r r i e d out.  While  the sample s i z e might s t i l l be considered s m a l l , t h i s study i s very important f o r g i v i n g i n s i g h t i n t o the f a c t o r s t h a t a r e i n f l u e n t i a l i n t h e b r e a s t r e c o n s t r u c t i o n decision-making  process.  What about the women who a c t u a l l y undergo b r e a s t r e c o n s t r u c t i o n a f t e r c o n s i d e r i n g a l l the f a c t o r s t h a t a l l e g e d l y i n f l u e n c e d t h e i r decision-making?  C l i f f o r d (1979) l i s t s the  expectations o f r e c o n s t r u c t i v e b r e a s t surgery p a t i e n t s as " r e s t o r a t i o n , r e l i e f o f c l o t h i n g o r p r o s t h e t i c problems, becoming l e s s s e l f - c o n s c i o u s o r embarrassed, improving  appearance,  improving f e e l i n g s , improving m a r i t a l r e l a t i o n s h i p s , changing l i f e - s t y l e and no e x p e c t a t i o n s " ( p . 2 9 ) . Perception o f the above b e n e f i t s o f r e c o n s t r u c t i o n may well be one o f the i n f l u e n t i a l f a c t o r s t h a t encourage women t o undergo breast reconstruction.  Examination  o f t h e l i t e r a t u r e and  research on b r e a s t r e c o n s t r u c t i o n make i t c l e a r t h a t the r e l e v a n t f a c t o r s i n f l u e n t i a l i n the decision-making  process can only be  complex and very i n d i v i d u a l i s t i c . I hope t h a t a l l those who read t h i s book w i l l keep i n mind the c o s t i n p a i n , time, and money o f r e c o n s t r u c t i o n , balance i t a g a i n s t the b e n e f i t f o r each p a t i e n t , and r e a l i z e t h a t i n the end, only the i n d i v i d u a l p a t i e n t can know where the  55 balance l i e s i n her own l i f e .  There i s no doubt i n my mind  that r e c o n s t r u c t i o n i s an important p a r t o f r e h a b i l i t a t i o n f o r some p a t i e n t s , e x c e l l e n t p a l l i a t i o n f o r some, and a useless gesture f o r others (Hunt, 1981, p. 4 ) . D e c i s i o n Theory D e c i s i o n theory i s examined i n t h i s s e c t i o n i n order to understand  i t s relevance t o the decision-making  in b r e a s t r e c o n s t r u c t i o n .  process i n v o l v e d  An h i s t o r i c a l overview i s given o f the  development o f general D e c i s i o n Theory, Behavioral Theory, and P s y c h o l o g i c a l D e c i s i o n Theory. information i n decision-making  Decision  The important r o l e o f  i s a l s o addressed.  The  o r g a n i z a t i o n o f t h i s s e c t i o n i s useful i n terms o f p l a c i n g the t h e o r e t i c a l concepts in. context with i n d i v i d u a l s who a r e faced with h e a l t h - c a r e  decision-making.  The o r i g i n s o f decision-making  a n a l y s i s stem from the  d i s c i p l i n e s o f mathematics and economics (Edwards, 1968; Lee, 1971).  B e r n o u l i , a mathematical economist and Bentham, a  philosopher economist, a r e recognized as being instrumental i n the i n i t i a l f o r m u l a t i o n o f d e c i s i o n theory i n the eighteenth century (Edwards, 1954, 1968).  Hammond, M c C l e l l a n d and Mumpower  (1980) s t a t e Bernouli b e l i e v e d t h a t "the worth o f a d e c i s i o n i s determined by the p r o b a b i l i t y o f events and t h e i r a s s o c i a t e d u t i l i t i e s " ( p . 22) o r v a l u e s . philosophy o f Bentham.  Edwards (1954) c i t e s the f o l l o w i n g  "Every o b j e c t o r a c t i o n may be c o n s i d e r e d  from the p o i n t o f view o f p l e a s u r e - o r p a i n - g i v i n g p r o p e r t i e s .  56 These p r o p e r t i e s a r e c a l l e d the u t i l i t y o f the o b j e c t , and pleasure i s given by p o s i t i v e u t i l i t y and pain by negative u t i l i t y " ( p . 382). The u l t i m a t e goal o f a c t i o n was p e r c e i v e d as searching f o r the maximum u t i l i t y , whether from a mathematical, s t a t i s t i c a l , or economic p e r s p e c t i v e (Edwards, 1954). Bernouli and Bentham had a powerful nineteenth-century  Both  impact on the t h i n k i n g o f  economists.  Lewin was the f i r s t person to approach these economic concepts from a p s y c h o l o g i c a l p e r s p e c t i v e .  In the 1930's, he  described valence ( u t i l i t y ) and explored some p r o b a b i l i t y - l i k e concepts (Edwards, 1968).  Lewin was r e p o r t e d l y i n f l u e n c e d by the  mathematician, von Neumann (Edwards, 1968).  U n f o r t u n a t e l y , the  Lewinian f o r m u l a t i o n s were not measurable and as a r e s u l t , p s y c h o l o g i c a l i n t e r e s t i n d e c i s i o n processes was n o t s u s t a i n e d (Edwards, 1968).  I t was n o t u n t i l von Neumann and Morgenstern  published t h e i r c l a s s i c book, Theory o f Games and Economic Behavior, i n 1944 t h a t the concept o f measuring u t i l i t y emerged (Edwards, 1968).  Edwards (1968) s t a t e s t h a t the authors' c l a i m  that men a r e r a t i o n a l decision-makers  " i s the h i s t o r i c a l o r i g i n  of most p s y c h o l o g i c a l research on d e c i s i o n processes s i n c e then" (p. 3 5 ) . In a d d i t i o n t o the key assumption t h a t an i n d i v i d u a l i s always r a t i o n a l , p r i n c i p l e s o f economic theory during t h i s time s p e c i f i e d t h a t i n d i v i d u a l s a l s o know a l l the a v a i l a b l e c h o i c e s and can p r e d i c t the outcome o f a l l d e c i s i o n s (Edwards, 1954). I t  57 was noted by Edwards (1954) a t t h i s p o i n t i n time t h a t "the development o f the economic theory o f consumer's  decision-making  . . . has become exceedingly e l a b o r a t e , mathematical, and voluminous" (p. 380).  T h i s emphasis on the mathematical  p e r s p e c t i v e o f f e r e d l i m i t e d i n s i g h t i n t o the behavior of r e a l people and may have been r e s p o n s i b l e f o r p s y c h o l o g i s t s ' general l a c k of knowledge about economic theory (Edwards, 1954;  Lee,  1971). Edwards (1968) claims t h a t D e c i s i o n Theory adheres to the following basic p r i n c i p l e s : One, the p r i n c i p l e o f maximizing expected u t i l i t y , i n essence a s s e r t s t h a t you should choose the a c t i o n t h a t on the average w i l l leave you best o f f . The o t h e r , a p r i n c i p l e of p r o b a b i l i t y theory c a l l e d Bayes' Theorem, i s a f o r m a l l y optimal r u l e f o r transforming o p i n i o n s i n the l i g h t o f new i n f o r m a t i o n , and so s p e c i f i e s how you should  process  information (p. 34). A b a s i c premise of D e c i s i o n Theory i n v o l v e s the b e l i e f t h a t i t i s not the a c t u a l behavior o f d e c i s i o n makers t h a t i s v a l i d but the expectation o f what they should do t h a t i s a l l important. K o z i e l e c k i (1981) d i r e c t s a t t e n t i o n to the f o l l o w i n g l i m i t a t i o n s of D e c i s i o n Theory:  " e x p l i c i t l y or i m p l i c i t l y they assume t h a t  optimal d e c i s i o n s are completely determined by the s t r u c t u r e o f the task, which renders i r r e l e v a n t any a n a l y s i s o f e i t h e r the c o g n i t i v e processes or the p e r s o n a l i t y aspects of the d e c i s i o n  58 maker" (p. 20).  Any i n t e r p r e t a t i o n o f the reasons why d e c i s i o n  makers f a i l to a c t i n a l o g i c a l manner or c o n s i d e r a t i o n o f t h e i r information p r o c e s s i n g a b i l i t y i s l e f t e n t i r e l y up to p s y c h o l o g i s t s (Hammond e t a l . , 1980; K o z i e l e c k i , 1981).  For t h i s  reason, D e c i s i o n Theory i s r e f e r r e d to as a normative or p r e s c r i p t i v e theory because i t i n v o l v e s the r a t i o n a l c h o i c e s t h a t an i n d i v i d u a l should make i n a given s i t u a t i o n . The f o l l o w i n g s e c t i o n s on decision-making  theory use more o f a d e s c r i p t i v e ,  t h e o r e t i c a l approach because t h e i r p s y c h o l o g i c a l focus i s on the actual c h o i c e s r e a l people make, r e g a r d l e s s o f what they should do (Edwards, 1968; K o z i e l e c k i , 1981).  I t i s important to bear i n  mind, before proceeding f u r t h e r , t h a t the boundaries mathematical, economical,  of  and behavioral d e c i s i o n t h e o r i e s are  not well d e l i n e a t e d and overlap c o n s i d e r a b l y . Behavioral D e c i s i o n Theory Edwards, a p s y c h o l o g i s t who took a s p e c i a l i n t e r e s t i n the c o g n i t i v e aspects o f decision-making, psychology  demonstrated how h i s  focus could supplement the economists'  (Hammond e t a l . , 1980).  D e c i s i o n Theory  His a r t i c l e on "The Theory of D e c i s i o n  Making", p u b l i s h e d i n 1954, was a landmark i n terms of g i v i n g v a l i d i t y and coherence to D e c i s i o n Theory and e s t a b l i s h i n g the great need f o r p s y c h o l o g i s t s to become i n v o l v e d i n the study of t h i s t o p i c (Hammond e t a l . , 1980).  One o f Edwards' most  important c o n t r i b u t i o n s was h i s e m p i r i c a l research on d e c i s i o n making which was guided by h i s b e l i e f i n the "economists'  theory  59 of value and c h o i c e " ( p . 4 5 ) . Edwards searched f o r a theory to d e s c r i b e the behavioral short-comings o f the decision-maker  which was i n d i r e c t c o n t r a s t  with the s t r i c t l y r a t i o n a l view o f man h e l d by d e c i s i o n t h e o r i s t s (Hammond e t a l . , 1980).  I t was l a r g e l y through the impetus o f  Edwards' w r i t i n g s and research t h a t behavioral  decision-making  theory became e s t a b l i s h e d . P s y c h o l o g i c a l D e c i s i o n Theory Within an i n t e r v a l o f twenty y e a r s f o l l o w i n g the p u b l i c a t i o n of Edwards' i n f l u e n t i a l 1954 paper, two p s y c h o l o g i s t s named Kahneman and Tversky f u r t h e r developed decision-making  theory t o  encompass d e s c r i p t i o n , e x p l a n a t i o n , and p r e d i c t i o n o f d e c i s i o n behavior (Hammond e t a l . , 1980). According t o Hammond e t a l . , the primary goal o f P s y c h o l o g i c a l D e c i s i o n Theory i s t o "seek the manner i n which the processes o f memory, p e r c e p t i o n , and s p e c i f i c v a r i e t i e s o f experience l e a d decision-makers  t o develop  systematic e r r o r s i n t h e i r estimates o f the p r o b a b i l i t y and u t i l i t i e s t h a t a r e the key parameters i n d e c i s i o n theory" (p. 11). The p s y c h o l o g i s t focuses on e s s e n t i a l c h a r a c t e r i s t i c s of the decision-maker  which i n c l u d e mental t r a i t s t h a t e x i s t i n  every i n d i v i d u a l , and p e r s o n a l i t y t r a i t s which are unique t o each person ( K o z i e l e c k i , 1981). Jam's & Mann (1977) s t a t e : Like Lewin, we see man not as a c o l d f i s h but as a warm-blooded mammal, not as a r a t i o n a l c a l c u l a t o r always ready to work out the best s o l u t i o n but as a r e l u c t a n t  60 d e c i s i o n maker - beset by c o n f l i c t , doubts, and worry, s t r u g g l i n g with incongruous l o n g i n g s , a n t i p a t h i e s , and l o y a l t i e s , and seeking r e l i e f by p r o c r a s t i n a t i n g , r a t i o n a l i z i n g , o r denying r e s p o n s i b i l i t y f o r h i s own c h o i c e s (p. 15). Jam's and Mann (1977) f u r t h e r h i g h l i g h t the human q u a l i t i e s o f the decision-maker by c i t i n g Abel son's b e l i e f t h a t " t h i n k i n g about v i t a l , a f f e c t - l a d e n i s s u e s g e n e r a l l y i n v o l v e s 'hot c o g n i t i o n s ' i n c o n t r a s t to the 'cold c o g n i t i o n s ' o f r o u t i n e problem-solving"  ( p . 4 5 ) . I t i s l i k e l y t h a t any h e a l t h - r e l a t e d  d e c i s i o n w i l l have some emotional overtones, p a r t i c u l a r l y one concerning b r e a s t r e c o n s t r u c t i o n .  One wonders i f i n d i v i d u a l s  making h e a l t h - c a r e d e c i s i o n s a r e even more v u l n e r a b l e t o f a i l u r e in terms o f making a s o - c a l l e d good, r a t i o n a l d e c i s i o n because they are unable t o make a c o o l , l o g i c a l d e c i s i o n .  This l o g i c may  be precluded by a l a c k o f h e a l t h , energy, and time, o r other personal f a c t o r s .  The above a s s e r t i o n t h a t an i n d i v i d u a l ' s  t h i n k i n g can be i n f l u e n c e d by i n t e r n a l emotions which a r e not dependent on the external environment leads K o z i e l e c k i t o maintain t h a t t h i s " i m p l i e s the r e j e c t i o n o f the b e h a v i o r i s t notion o f man as a r e a c t i v e system c o n t r o l l e d by external s t i m u l a t i o n " ( p . 2 3 ) . P s y c h o l o g i c a l theory moves beyond the realm o f behavioral d e c i s i o n theory because i t i n v o l v e s several general p r o p o s i t i o n s t h a t d e s c r i b e the r e a l behavior o f both i n d i v i d u a l s and groups o f people ( K o z i e l e c k i , 1981).  Hammond e t  61 a l . (1980) r e p o r t t h a t t h i s change i n t h i n k i n g from Behavioral to P s y c h o l o g i c a l D e c i s i o n Theory was the r e s u l t of a v a l i d amount o f empirical evidence demonstrating  " t h a t d e v i a t i o n s of s u b j e c t i v e  from o b j e c t i v e p r o b a b i l i t y were r e l i a b l e , s y s t e m a t i c ,  and  d i f f i c u l t to e l i m i n a t e " (p. 23). P s y c h o l o g i c a l D e c i s i o n Theory supports the premise t h a t g o a l - d i r e c t n e s s i s an inborn t r a i t t h a t i s possessed by a l l human decision-makers.  K o z i e l e c k i (1981) s t a t e s "goal . . . r e f e r s to  the person's awareness o f a s u b j e c t i v e value ( u t i l i t y ) he i s determined to r e a l i z e ( a t t a i n ) ; t h i s awareness guides h i s behavior" (p. 24).  T h i s awareness i s f o s t e r e d by i n f o r m a t i o n ,  which i s e i t h e r c o l l e c t e d by i n d i v i d u a l s themselves through thought processes or i s r e c e i v e d from the environment as an observation or d e f i n i t e communication ( K o z i e l e c k i , 1981). According to K o z i e l e c k i (1981), goals are perceived as being r e f l e c t i v e o f a person's p h y s i o l o g i c a l and s o c i a l needs. In c o n c l u s i o n , while P s y c h o l o g i c a l D e c i s i o n Theory appears to be more useful i n d e s c r i b i n g the a c t u a l r e a l i t i e s o f human d e c i s i o n making, Hammond e t a l . (1980) s p e c i f y t h a t i t continues to be a l i g n e d with b a s i c D e c i s i o n Theory. I t s t i l l i n c l u d e s p r o b a b i l i t i e s and u t i l i t i e s among i t s c e n t r a l d e s c r i p t i v e terms, and t h a t one o f i t s intended f u n c t i o n s i s to e v a l u a t e , as well as to d e s c r i b e the decision-making  behavior of a s u b j e c t i n terms of o p t i m a l i t y  p r e s c r i b e d by a mathematical ( s t a t i s t i c a l ) model (p. 47).  62 The l i m i t a t i o n s o f t h i s mathematical model are a p t l y demonstrated by J a n i s and Mann (1977), who p o i n t o u t t h a t there i s no s c i e n t i f i c way o f combining a l l the human f a c t o r s i n v o l v e d i n decision-making  i n t o a s i n g l e o b j e c t i v e u t i l i t y measure.  Janis  and Mann (1977) c i t e M i l l e r and S t a r r as s t a t i n g : But there i s no convenient measuring u n i t f o r the u t i l i t y o f an i n t a n g i b l e such as d i g n i t y . T h e r e f o r e , even i f these other f a c t o r s can be t h e o r e t i c a l l y expressed i n terms o f [ s u b j e c t i v e ] u t i l i t y the d i f f i c u l t i e s i n v o l v e d i n measuring the u t i l i t i e s prevent the theory [ o f maximization o f u t i l i t i e s ] from s a t i s f a c t o r i l y e x p l a i n i n g observed  behavior  and d e c i s i o n ( p . 2 5 ) . The preceding s e c t i o n d i s c u s s e d the various t h e o r e t i c a l concepts r e l a t e d t o general D e c i s i o n Theory, Behavioral Theory, and P s y c h o l o g i c a l D e c i s i o n Theory.  Decision  Given t h a t b r e a s t  r e c o n s t r u c t i o n i s an important p s y c h o l o g i c a l i s s u e f o r those women who c o n s i d e r t h i s surgery, i t appears t h a t P s y c h o l o g i c a l D e c i s i o n Theory i s most r e l e v a n t to the t o p i c under study.  This  theory appears most l i k e l y to accommodate the i n d i v i d u a l i t y o f women undergoing the decision-making  process regarding b r e a s t  r e c o n s t r u c t i o n and t h e r e f o r e i s a l s o congruent with the study's phenomenological f o c u s .  I t i s assumed t h a t knowledge o f the  u n d e r l y i n g p r i n c i p l e s c h a r a c t e r i z i n g general d e c i s i o n theory enhances understanding decision-making  o f c r i t i c a l f a c t o r s inherent i n the  process regarding b r e a s t r e c o n s t r u c t i o n .  63 The f o l l o w i n g s e c t i o n explores the i n t e g r a l r o l e o f information i n the decision-making  process.  Several  authors  demonstrate methods regarding how i n d i v i d u a l s process and deal with information r e l a t e d to t h e i r decision-making. Role of Information i n  Decision-Making  The importance o f i n f o r m a t i o n to the decision-making  process  i s demonstrated by Jam's and Mann (1977) who p o s i t t h a t any d e c i s i o n t h a t i s made i n the best i n t e r e s t o f a decision-maker the r e s u l t o f u s i n g v i g i l a n t i n f o r m a t i o n p r o c e s s i n g .  is  Sachs  (1981) r e p o r t s t h a t "a d e c i s i o n reached i n t h i s manner w i l l have a high degree o f s t a b i l i t y , t h a t i s , i t w i l l not be e a s i l y challenged by u n a n t i c i p a t e d outcomes" (p. 114). This v i g i l a n t d e c i s i o n process i s c h a r a c t e r i z e d by the f o l l o w i n g seven c r i t e r i a which the authors f e e l must be u t i l i z e d in order to make a good, h i g h - q u a l i t y d e c i s i o n (Jam's & Mann, 1977). The decision-maker,  to the b e s t of h i s a b i l i t y and w i t h i n  his information-processing c a p a b i l i t i e s : 1.  thoroughly canvasses a wide range of a l t e r n a t i v e  courses of a c t i o n ; 2.  surveys the f u l l range o f o b j e c t i v e s to be f u l f i l l e d  and the values i m p l i c a t e d by the c h o i c e ; 3.  c a r e f u l l y weighs whatever he knows about the c o s t s and  r i s k s of negative consequences, as well as the p o s i t i v e consequences, t h a t c o u l d flow from each a l t e r n a t i v e ;  64 4.  i n t e n s i v e l y searches f o r new i n f o r m a t i o n r e l e v a n t t o  f u r t h e r e v a l u a t i o n o f the a l t e r n a t i v e s ; 5.  c o r r e c t l y a s s i m i l a t e s and takes account o f any new  information o r e x p e r t judgement t o which he i s exposed, even when the i n f o r m a t i o n o r judgement does not support the course o f a c t i o n he i n i t i a l l y p r e f e r s ; 6.  re-examines the p o s i t i v e and negative consequences o f  a l l known a l t e r n a t i v e s , i n c l u d i n g those o r i g i n a l l y regarded as unacceptable, before making a f i n a l c h o i c e ; 7.  makes d e t a i l e d p r o v i s i o n s f o r implementing o r e x e c u t i n g  the chosen course o f a c t i o n , with s p e c i a l a t t e n t i o n t o contingency plans t h a t might be r e q u i r e d i f v a r i o u s known r i s k s were t o m a t e r i a l i z e ( p . 11). T h e i r c o n t e n t i o n i s " t h a t f a i l u r e t o meet any o f these seven c r i t e r i a when a person i s making a fundamental d e c i s i o n . . . c o n s t i t u t e s a d e f e c t i n the decision-making process" ( p . 11). Simon (1982) has been i n f l u e n t i a l by q u e s t i o n i n g the o r i g i n a l economic theory t h a t assumed decision-makers knew about every p o s s i b l e course o f a c t i o n , and were a l s o c o g n i z a n t o f the values o f every a l t e r n a t i v e (Edwards, 1968).  He presents  concepts which a r e i n d i r e c t c o n t r a s t to J a n i s and Mann's i n f o r m a t i o n p r o c e s s i n g methods i n decision-making.  Simon  b e l i e v e s t h a t people may not always have the time and energy t o c o n s i d e r a l l a l t e r n a t i v e s when making a d e c i s i o n . In f a c t , with some d a i l y or simple d e c i s i o n s i t would c l e a r l y be a waste o f  65 time f o r the decision-maker information.  to c o n s i d e r a l l the a v a i l a b l e  The f o l l o w i n g excerpt by Simon (1982) introduces  his concepts o f s a t i s f i c i n g and o p t i m i z i n g , which may well be a l t e r n a t i v e s to the v i g i l a n t s t r a t e g y p r e v i o u s l y d i s c u s s e d . The terms s a t i s f i c i n g and o p t i m i z i n g . . . are l a b e l s f o r two broad approaches t o r a t i o n a l behavior i n s i t u a t i o n s where complexity and u n c e r t a i n t y make global r a t i o n a l i t y impossible.  In those s i t u a t i o n s , o p t i m i z a t i o n becomes  approximate o p t i m i z a t i o n - the d e s c r i p t i o n o f the r e a l - w o r l d s i t u a t i o n i s r a d i c a l l y s i m p l i f i e d u n t i l reduced to a degree of c o m p l i c a t i o n the decision-maker  can handle. S a t i s f i c i n g  approaches seek t h i s s i m p l i f i c a t i o n i n a somewhat d i f f e r e n t d i r e c t i o n , r e t a i n i n g more o f the d e t a i l o f the r e a l - w o r l d s i t u a t i o n , but s e t t l i n g f o r a s a t i s f a c t o r y , r a t h e r than an approximate-best d e c i s i o n ( p . 417). Jam's and Mann (1977) s t a t e t h a t ' s a t i s f i c i n g s t r a t e g y ' " i n v o l v e s more s u p e r f i c i a l search f o r information and l e s s c o g n i t i v e work than v i g i l a n t d e c i s i o n s t r a t e g y .  A l l t h a t the  person has t o do i s c o n s i d e r a l t e r n a t i v e courses o f a c t i o n s e q u e n t i a l l y u n t i l one t h a t ' w i l l do i s found" ( p . 2 6 ) . When 1  comparing the ideas o f Jam's and Mann with Simon's, i t i s reasonable to p o s t u l a t e t h a t a ' s a t i s f i c i n g stragegy' would more l i k e l y be used on a r e g u l a r b a s i s than a v i g i l a n t s t r a t e g y . I t would be i n t e r e s t i n g to examine women's d e c i s i o n s regarding breast r e c o n s t r u c t i o n and see i f e i t h e r o f the above approaches  66 to decision-making were used and  why.  Lenz's (1984) a r t i c l e demonstrates the c r i t i c a l l i n k between information-seeking and decision-making.  Lenz explored the  concept o f i n f o r m a t i o n - s e e k i n g i n c l i e n t s as i t r e l a t e d to decision-making  about h e a l t h c a r e .  She s t a t e s t h a t :  the p r o v i s i o n o f i n f o r m a t i o n to c l i e n t s by nurses  has  r e c e i v e d c o n s i d e r a b l e a t t e n t i o n i n the n u r s i n g l i t e r a t u r e but r e l a t i v e l y l i t t l e cognizance has been given to the a c t i v e r o l e o f c l i e n t s i n seeking and a c q u i r i n g i n f o r m a t i o n that may be instrumental i n determining t h e i r h e a l t h behavior (p. 59). Information can be obtained e i t h e r o v e r t l y by a c t i v e l y seeking i t , or i n a p a s s i v e f a s h i o n , such as watching  television.  Lenz (1984) c l a i m s t h a t "the i n f o r m a t i o n search process i s c o n c e p t u a l i z e d as a subcomponent of the d e c i s i o n process" (p. 61).  She concurs with the t r a d i t i o n a l view held i n  decison-making  theory t h a t the more thorough the i n f o r m a t i o n  a c q u i s i t i o n , the g r e a t e r the r a t i o n a l i t y o f the d e c i s i o n . Corbin (1980) supports Lenz by c l a i m i n g t h a t " i n f o r m a t i o n c o l l e c t i o n and d e l i b e r a t i o n . . . are geared i n p a r t to reducing the s u b j e c t i v e u n c e r t a i n t y t h a t c h a r a c t e r i z e s any d e c i s i o n " (p. 59). During the process o f a c q u i r i n g i n f o r m a t i o n , the searcher assesses i t s adequacy i n order to decide whether more i n f o r m a t i o n i s needed or i f the search can be d i s c o n t i n u e d (Lenz, 1984).  67 T h e r e f o r e , a person who determines  the i n f o r m a t i o n a c q u i r e d  to be inadequate may stop s e a r c h i n g , r e c o g n i z i n g t h a t the d e c i s i o n w i l l be made under l e s s - t h a n - i d e a l c o n d i t i o n s . F a t i g u e , boredom, f r u s t r a t i o n , urgency t o take a c t i o n , and d i f f i c u l t y i n e x t r a c t i n g i n f o r m a t i o n from sources encourage 'premature t e r m i n a t i o n  1  o f search, whereas c u r i o s i t y ,  i n t e r e s t , knowledgeable and w i l l i n g c o n s u l t a n t s , and s t r i c t adherence to p r e d e f i n e d goals encourage c o n t i n u a t i o n (p. 6 5 ) . Based on the l i t e r a t u r e , then, i t appears c l e a r t h a t information s e a r c h i n g , c o l l e c t i n g , and p r o c e s s i n g i s viewed as an i n t e g r a l aspect o f decision-making.  Therefore,  i t i s important  to assess the q u a l i t y o f i n f o r m a t i o n - s e e k i n g among women d e c i d i n g about b r e a s t r e c o n s t r u c t i o n . decision-making  I t w i l l be important t o examine the  t h e o r i s t s ' b e l i e f t h a t a 'good d e c i s i o n ' i s based  on having adequate i n f o r m a t i o n and t h a t a 'poor d e c i s i o n ' i s c h a r a c t e r i z e d by a l a c k o f i n f o r m a t i o n , and determine i f t h i s i s a p p l i c a b l e to b r e a s t r e c o n s t r u c t i o n d e c i s i o n s . P a t i e n t Decision-Making  Research  An examination o f research on p a t i e n t decision-making i n r e l a t i o n t o h e a l t h care i s s u e s r e v e a l e d a l i m i t e d amount o f l i t e r a t u r e p e r t a i n i n g to t h i s t o p i c . decision-making  Information about  tends to focus more on d e c i s i o n s made by h e a l t h  p r o f e s s i o n a l s r a t h e r than the p a t i e n t s ' d e c i s i o n s ( E i s e n b e r g , K i t z & Webber, 1983; Howe & Wilcox, 1983; Turner & Kofoed,  68 1984).  The next p o r t i o n o f t h i s d i s c u s s i o n addresses the c u r r e n t  research on p a t i e n t decision-making. A study by Sachs (1981), using the model o f v i g i l a n t decision-making, e v a l u a t e d the degree o f r e a d i n e s s shown i n p a t i e n t s who d e s i r e d treatment o f d e n t o f a c i a l anomalies.  For  these p a t i e n t s , one o f the major p s y c h o l o g i c a l f a c t o r s c o n t r i b u t i n g to t h e i r degree o f r e a d i n e s s was t h e i r wish to improve t h e i r appearance. P a t i e n t s were asked to express t h e i r views about the d e c i s i o n and o u t l i n e t h e i r course o f a c t i o n i n coming to a decision.  They were given a d e c i s i o n a i d which e n t a i l e d f i l l i n g  out gains and l o s s e s f o r both themselves and o t h e r s (Sachs, 1981).  T h i s study demonstrated t h a t a s s e s s i n g each p a t i e n t ' s  readiness i n terms o f her own decision-making process was much more e f f e c t i v e than simply l a b e l l i n g them good or bad r i s k s f o r treatment (Sachs, 1981).  Since the l i t e r a t u r e review suggests  that one o f the major f a c t o r s t h a t compelled women to seek r e c o n s t r u c t i o n was t h e i r p e r c e i v e d deformed appearance,  Sach's  study has r e l e v a n c e to b r e a s t r e c o n s t r u c t i o n decision-making. D e a t r i c k ' s (1984) study d e a l t with 24 c h r o n i c a l l y d i s a b l e d adolescents who were i n v o l v e d i n making a d e c i s i o n about e l e c t i v e c o r r e c t i v e surgery.  These a d o l e s c e n t s presented with a v a r i e t y  of diagnoses, " i n c l u d i n g c e r e b r a l p a l s y , severe burn s c a r s , s c o l i o s i s , phalangeal d e f i c i e n c i e s and amelias" ( D e a t r i c k , 1984). This research had a q u a l i t a t i v e focus and d e s c r i b e d "the  69 c h a r a c t e r i s t i c s , the p r o c e s s , and the e v a l u a t i o n o f t h i s decision-making process from the p e r s p e c t i v e s o f both the adolescents and t h e i r parents" ( p . 18).  The g o a l s t h a t the  adolescents had f o r surgery a s s i s t e d i n shaping the meaning o f the event and i n b u i l d i n g a framework f o r the experience ( D e a t r i c k , 1984).  R e s u l t s o f t h i s study provide i n s i g h t i n t o a  decision-making process from a p a t i e n t ' s p o i n t o f view.  This  process i s comparable t o b r e a s t r e c o n s t r u c t i o n decision-making i n that none o f the s u r g e r i e s were l i f e - s a v i n g , a l l o w i n g the decision-maker t o c o n s i d e r more a l t e r n a t i v e s . McClain's (1983) research was d i r e c t e d a t the decision-making process among women who were choosing a l t e r n a t i v e methods f o r l a b o u r and d e l i v e r y . The three c h o i c e s examined were b i r t h a t home with lay-midwife a t t e n d a n t s , b i r t h i n the a l t e r n a t e b i r t h c e n t r e with a nurse-midwife, and conventional labour and d e l i v e r y with an o b s t e t r i c i a n (McClain, 1983). The author d i s c o v e r e d t h a t the women i n her study used the f o l l o w i n g process described by Jam's and Mann as ' b o l s t e r i n g ' . T h i s i n v o l v e s " d e c i s i o n makers who c o g n i t i v e l y strengthen e i t h e r the p r e f e r r e d (or l e a s t o b j e c t i o n a b l e ) a l t e r n a t i v e o r the f i n a l d e c i s i o n itself.  T h i s i n v o l v e s d e f i n i n g o r r e - d e f i n i n g the r i s k s and  b e n e f i t s o f a l t e r n a t i v e s so t h a t they favour the p r e f e r r e d o r chosen a l t e r n a t i v e s and a t the same time disparage the r e j e c t e d a l t e r n a t i v e s " (McClain, 1983, p. 1858).  The process o f  b o l s t e r i n g a s s i s t e d each woman t o f e e l more c o n f i d e n t t h a t she  70 was making the r i g h t d e c i s i o n . Berger and Bostwick (1984) interviewed e i g h t women regarding t h e i r decision-making  about b r e a s t r e c o n s t r u c t i o n .  Although the  sample s i z e was very s m a l l , these i n t e r v i e w s presented s p e c i f i c d e t a i l s about the f a c t o r s t h a t c o n t r i b u t e d to each woman's d e c i s i o n to undergo r e c o n s t r u c t i o n . i n s i g h t i n t o the decision-making  The f o l l o w i n g excerpt g i v e s  process o f one post-mastectomy  woman: Even 3 years a f t e r the mastectomy, when I c o n s u l t e d with a p l a s t i c surgeon, I wasn't dying to have t h i s o p e r a t i o n .  I  r a t i o n a l i z e d my d e c i s i o n f o r more surgery because o f the physical problems I was having.  I had developed  backaches  . . . and i t [the p r o s t h e s i s ] was hot and such an annoyance in the summer. subject.  I was very r a t i o n a l about t h i s whole  C e r t a i n l y I t o l d myself, r e c o n s t r u c t i o n i s  something you want, j u s t because o f the p r o s t h e s i s and t o make your back f e e l b e t t e r . those  So I decided to go ahead f o r  reasons.  Berger and Bostwick c i t e numerous examples o f such i l l u s t r a t i o n s . T h e i r f i n d i n g s w i l l be d i s c u s s e d f u r t h e r i n Chapter F i v e . The above c o n c l u d i n g s e c t i o n on decision-making c l e a r l y r e v e a l s a l a c k o f s t u d i e s p e r t a i n i n g d i r e c t l y to b r e a s t reconstruction.  Though i t i s p o s s i b l e to gain i n s i g h t i n t o the  process o f p a t i e n t decision-making  from general  research  a r t i c l e s , i t would be more v a l u a b l e t o examine research t h a t  71 deals d i r e c t l y with b r e a s t r e c o n s t r u c t i o n decision-making, as Berger & Bostwick have done. There has been no l i t e r a t u r e o r research a v a i l a b l e on a n a l y z i n g the actual mechanics o f the decision-making  process i n women who c o n s i d e r b r e a s t  reconstruction. enlightenment  I t i s hoped t h a t the f u t u r e w i l l  provide  i n the form o f a d d i t i o n a l research i n t o the process  of decision-making decision-making  from a p a t i e n t ' s p o i n t o f view.  Patient  i s a t o p i c o f study which has only emerged i n the  1980's and has great p o t e n t i a l f o r development i n the y e a r s t o come. Summary This l i t e r a t u r e review d e a l t with the concepts o f body image, b r e a s t r e c o n s t r u c t i o n , and decision-making. t o p i c s a r e h e l p f u l i n understanding  These three  the needs o f the  post-mastectomy woman, the r e l e v a n t f a c t o r s a woman c o n s i d e r s i n undergoing b r e a s t r e c o n s t r u c t i o n , and the process i n v o l v e d i n decision-making.  Through examination  o f a l l three t o p i c s , i t was  hoped t h a t a comprehensive p i c t u r e could be developed t o uncover the p e r t i n e n t f a c t o r s t h a t a r e c r i t i c a l t o women who a r e c o n s i d e r i n g undergoing b r e a s t r e c o n s t r u c t i o n . This l i t e r a t u r e review a l s o i l l u s t r a t e d the relevance o f body image theory t o the post-mastectomy woman i n c o n s i d e r i n g breast r e c o n s t r u c t i o n .  T h i s concept i s useful f o r e x p l a i n i n g the  meaning o f the b r e a s t l o s s and the need f o r some woman t o c o n s i d e r options f o r r e s t o r a t i o n .  72 The d i s c u s s i o n r e g a r d i n g decision-making  presented the  h i s t o r y o f general d e c i s i o n theory and the concepts  that  d i s t i n g u i s h D e c i s i o n Theory, Behavioral D e c i s i o n Theory and P s y c h o l o g i c a l D e c i s i o n Theory.  Of these three t h e o r i e s ,  P s y c h o l o g i c a l D e c i s i o n Theory appeared t o be the most c l o s e l y a l i g n e d with the phenomenological focus o f t h i s study and was thus explored a t more length than the other two. The l i m i t e d amount o f nursing research i n r e l a t i o n t o p a t i e n t decision-making evident.  from the p a t i e n t ' s p o i n t o f view became  Berger and Bostwick provide the only source o f d i r e c t  information regarding the decision-making  process o f i n d i v i d u a l  women c o n s i d e r i n g r e c o n s t r u c t i o n ; however these authors do not have a nursing background. This l a c k o f research prevents h e a l t h p r o f e s s i o n a l s from examining the relevance o f f a c t o r s p e r t i n e n t t o women who a r e making a d e c i s i o n about r e c o n s t r u c t i o n .  As a r e s u l t there i s no  t h e o r e t i c a l base t o guide nursing p r a c t i c e . C o l l e c t i o n o f f i r s t - h a n d i n f o r m a t i o n from r e c o n s t r u c t i o n candidates would t h e r e f o r e be u s e f u l to give d i r e c t i o n f o r improving nursing care f o r t h i s growing p o p u l a t i o n .  I t i s hoped t h a t the c u r r e n t study  w i l l c o n t r i b u t e t o a g r e a t e r understanding  o f the decision-making  needs o f post-mastectomy women who c o n s i d e r b r e a s t reconstruction.  73 CHAPTER THREE Methodology  Introduction As d e s c r i b e d i n Chapter One, t h i s study was d i r e c t e d by the phenomenological  approach.  T h i s chapter e x p l a i n s i n g r e a t e r  d e t a i l how the paradigm o f q u a l i t a t i v e methodology was u t i l i z e d in t h i s r e s e a r c h study.  The t o p i c s d i s c u s s e d i n c l u d e the  s e l e c t i o n o f p a r t i c i p a n t s , data c o l l e c t i o n , data a n a l y s i s , and e t h i c a l c o n s i d e r a t i o n s . The r e s e a r c h e r was guided by t h e f o l l o w i n g authors who d e s c r i b e the phenomenological  methodology:  Davis (1978), D i e r s (1979), Lindemann (1974), and O i l e r (1982). Selection of Participants This study i s concerned with the decision-making process o f post-mastectomy  women who decided e i t h e r t o choose o r r e f u s e  b r e a s t r e c o n s t r u c t i o n a f t e r c o n s u l t a t i o n with a p l a s t i c surgeon. The i n i t i a l c r i t e r i o n f o r s e l e c t i o n was involvement o f these women with a p l a s t i c surgeon f o r the purpose o f seeking information r e g a r d i n g b r e a s t r e c o n s t r u c t i o n .  T h i s c r i t e r i o n was  used because i t was f e l t t h a t any post-mastectomy  woman  i n t e r e s t e d enough i n b r e a s t r e c o n s t r u c t i o n t o d i s c u s s i t with a p l a s t i c surgeon would have a l r e a d y gone through a decision-making process with regard t o t h i s procedure.  The phenomenological  approach a s s e r t s t h a t women who themselves l i v e the experience o f b r e a s t r e c o n s t r u c t i o n decision-making a r e the experts on t h i s t o p i c ( P e a r s a l l , 1970).  The above two p a r t i c i p a n t groups  74 represented a convenience  sample.  One cannot assume, however, t h a t post-mastectomy  women who  do not seek c o n t a c t with a p l a s t i c surgeon a r e not i n v o l v e d i n decision-making r e g a r d i n g b r e a s t r e c o n s t r u c t i o n .  Clearly, this  l a t t e r group would be an i n t e r e s t i n g group o f women t o study, i n view o f the f a c t t h a t the m a j o r i t y o f post-mastectomy see a p l a s t i c surgeon.  women never  I t was deemed beyond the scope o f the  study however, t o i n c l u d e the above group o f post-mastectomy women among the p a r t i c i p a n t s . Criteria for Selection Given t h a t b r e a s t cancer i s r a r e i n women under 21, t h i s study was l i m i t e d t o those 21 y e a r s o r o l d e r . A l l p a r t i c i p a n t s were to be r e s i d e n t s o f the Greater Vancouver area and able t o speak E n g l i s h . S e l e c t i o n Procedure The p a r t i c i p a n t s were s e l e c t e d from the p r i v a t e p r a c t i c e s o f two p l a s t i c surgeons.  I n i t i a l c o n t a c t with p o t e n t i a l  p a r t i c i p a n t s was made i n two d i f f e r e n t ways. The p a t i e n t s o f one p l a s t i c surgeon were f i r s t c o n t a c t e d through an e x p l a n a t o r y l e t t e r from t h e i r surgeon.  P a r t i c i p a n t s were asked i n the l e t t e r  to phone the o f f i c e nurse and l e a v e t h e i r name i f they were i n t e r e s t e d i n t a k i n g p a r t i n the study.  The r e s e a r c h e r then sent  an i n f o r m a t i o n and consent l e t t e r t o these p a r t i c i p a n t s .  When  the p a r t i c i p a n t s r e t u r n e d the signed consent form they were then contacted by phone. An i n t e r v i e w t o take place i n the  75 p a r t i c i p a n t ' s home was scheduled a t a time convenient t o her. The p a r t i c i p a n t s who were p a t i e n t s o f t h e second p l a s t i c surgeon were i n i t i a l l y c o n t a c t e d by t h e p l a s t i c surgeon's o f f i c e nurse, who e x p l a i n e d the study t o them.  I f they expressed  i n t e r e s t i n p a r t i c i p a t i n g , they were informed t h a t the r e s e a r c h e r would c o n t a c t them by l e t t e r .  When the signed consent was sent  back the r e s e a r c h e r c o n t a c t e d the p a r t i c i p a n t by phone and arranged an i n t e r v i e w i n her home. In both c a s e s , a complete e x p l a n a t i o n o f the study was given v e r b a l l y t o t h e p a r t i c i p a n t s before the i n t e r v i e w . C h a r a c t e r i s t i c s o f the P a r t i c i p a n t s Sixteen p a r t i c i p a n t s gave consent and were i n c l u d e d i n the study.  T h e i r ages ranged from 32 t o 64 y e a r s . Ten o f the  p a r t i c i p a n t s were between the ages o f 50 and 60. Two women were in t h e i r 30s, two i n t h e i r 40s, and two i n t h e i r 60s a t the time of the study.  A l l o f the p a r t i c i p a n t s were Caucasian.  Eleven women were married and l i v e d with t h e i r  husbands.  One woman l i v e d with her common-law husband and another woman had never m a r r i e d .  Three o f the women, who were not l i v i n g with a  spouse, had p r e v i o u s l y been m a r r i e d . p a r t i c i p a n t s had c h i l d r e n .  A l l but three o f the  Several o f these women had c h i l d r e n  l i v i n g a t home. Ten p a r t i c i p a n t s worked f u l l - t i m e and one worked part-time.  S i x women were v o l u n t e e r s i n the Reach f o r Recovery  mastectomy o r g a n i z a t i o n . T h i r t e e n o f the s i x t e e n p a r t i c i p a n t s had undergone b r e a s t  76 reconstruction.  Of these t h i r t e e n , two had had only one surgery  and had chosen not to have the n i p p l e r e c o n s t r u c t i o n . A l l other p a r t i c i p a n t s had had the n i p p l e r e c o n s t r u c t i o n and undergone from three to twelve b r e a s t r e c o n s t r u c t i o n o p e r a t i o n s . The b r e a s t r e c o n s t r u c t i o n s took p l a c e from e i g h t months f o l l o w i n g mastectomy to as much as f i f t e e n years post-mastectomy.  The average i n t e r v a l between mastectomy and  breast r e c o n s t r u c t i o n was from two to f o u r y e a r s .  Three  p a r t i c i p a n t s underwent b i l a t e r a l b r e a s t r e c o n s t r u c t i o n s a f t e r having had two separate mastectomies. Data C o l l e c t i o n The data were c o l l e c t e d by tape-recorded i n t e r v i e w s i n the p a r t i c i p a n t s ' homes. Each woman was interviewed twice; three were interviewed three times. were completed.  A total of t h i r t y - f i v e interviews  Information d i s c l o s e d a f t e r the tape r e c o r d e r  was turned o f f was w r i t t e n down immediately  f o l l o w i n g the  i n t e r v i e w and these f i e l d notes a l s o became p a r t o f the data. The i n t e r v i e w s averaged 1-1/4  hours.  The i n t e r v i e w was  l o o s e l y s t r u c t u r e d , using two main questions r e l a t i n g to decision-making  about b r e a s t r e c o n s t r u c t i o n (see Appendix B).  The content o f these two questions was d e r i v e d from a review of related l i t e r a t u r e .  The s e m i - s t r u c t u r e d i n t e r v i e w format  used i n order to encourage f u l l expression o f the experience by each p a r t i c i p a n t (Wilson, 1977).  was  decision-making  T h i s format a l s o  allowed the researcher to p e r c e i v e the information more c l e a r l y  77 from the women's p e r s p e c t i v e . New q u e s t i o n s were added i n the second i n t e r v i e w as a r e s u l t of the knowledge gained through the on-going process o f data c o l l e c t i o n and a n a l y s i s .  The second i n t e r v i e w c l a r i f i e d what had  been s a i d i n the f i r s t i n t e r v i e w and took account o f the events that o c c u r r e d between t h e f i r s t and second i n t e r v i e w . The second i n t e r v i e w was f a c i l i t a t e d by the r a p p o r t e s t a b l i s h e d i n the f i r s t i n t e r v i e w between the r e s e a r c h e r and p a r t i c i p a n t .  By v a l i d a t i n g  themes d e r i v e d from the accounts o f a l l p a r t i c i p a n t s , the researcher was able t o r e f i n e and c l a r i f y a b s t r a c t i o n s from the data as they emerged (Anderson & Chung, 1982). As p r e v i o u s l y mentioned, some p a r t i c i p a n t s were i n t e r v i e w e d three times, because they took p a r t i n a p i l o t study.  This p i l o t  study i n v o l v e d f i v e p a r t i c i p a n t s and took p l a c e i n March and May of 1983. The purpose o f t h i s i n i t i a l study was t o r e f i n e the study t o p i c and e s t a b l i s h a r e l e v a n t i n t e r v i e w guide.  A l l o f the  p a r t i c i p a n t s i n v o l v e d i n the p i l o t study had undergone b r e a s t reconstruction.  The d e c i s i o n to i n c l u d e p a r t i c i p a n t s who had  chosen to r e f u s e b r e a s t r e c o n s t r u c t i o n f o l l o w i n g c o n s u l t a t i o n with a p l a s t i c surgeon was made a f t e r the p i l o t i n t e r v i e w s had been completed.  The f i r s t round o f i n t e r v i e w s took p l a c e i n  January and February o f 1984. The second s e t o f i n t e r v i e w s took place between J u l y and October o f 1984. Rapport developed without d i f f i c u l t y between the r e s e a r c h e r and the p a r t i c i p a n t s .  The women expressed enthusiasm about  78 c o n t r i b u t i n g to the r e s e a r c h e r ' s knowledge and expressed  hope  that t h e i r experiences would be h e l p f u l to other post-mastectomy women c o n s i d e r i n g b r e a s t  reconstruction.  C o n s t r u c t i o n of Accounts Q u a l i t a t i v e methodology contends t h a t the p a r t i c i p a n t s ' experience, as presented through t h e i r accounts, ( O i l e r , 1982).  i s their truth  S u b s t a n t i a t i n g the f a c t s i n the p a r t i c i p a n t  accounts i s not as r e l e v a n t as the a b i l i t y to understand the experience  from the p a r t i c i p a n t ' s p e r s p e c t i v e .  the p a r t i c i p a n t ' s experience  The meaning of  i s i n t e r p r e t e d through the on-going  i n t e r p l a y of thoughts, f e e l i n g s , and statements from both the researcher and p a r t i c i p a n t . The i n t e r v i e w questions i n i t i a t e d the i n t e r a c t i o n between the researcher and the p a r t i c i p a n t s . One of phenomenology's basic premises i s t h a t the r e s e a r c h e r ' s thoughts and a c t i o n s i n f l u e n c e and e n r i c h the data c o l l e c t i o n ( D i e r s , 1979). the researcher attempted to monitor her own s u b j e c t i v e and c l a r i f y i t i n l i g h t of the o v e r a l l meaning of the process.  Thus, experience  research  Assumptions and b e l i e f s held by both the researcher  and  the p a r t i c i p a n t s are acknowledged w i t h i n the accounts and thus give a d d i t i o n a l r i c h n e s s to the data (Davis, 1978; D i e r s , 1979). Regular v a l i d a t i o n of accounts by the researcher i s imperative that the true meaning of each p a r t i c i p a n t ' s experience unfold.  can  so  79 Data A n a l y s i s A l l tapes were t r a n s c r i b e d verbatim f o l l o w i n g the completion of each i n t e r v i e w .  In keeping with the phenomenological  p e r s p e c t i v e , a n a l y s i s o f the data was c a r r i e d out c o n c u r r e n t l y with data c o l l e c t i o n .  As themes emerged from the accounts they  were formed i n t o a p p r o p r i a t e c a t e g o r i e s . Data were then s o r t e d i n t o these c a t e g o r i e s based on s i m i l a r i t i e s found among a l l the pieces o f i n f o r m a t i o n . T h i s r e s u l t i n g a n a l y t i c framework i n f l u e n c e d the i n t e r v i e w c o n t e n t , thus r e i n f o r c i n g the i n t e r l o c k i n g nature o f data c o l l e c t i o n and a n a l y s i s . The major themes t h a t emerged from i n i t i a l a n a l y s i s o f the accounts were v a l i d a t e d by the r e s e a r c h e r , e n s u r i n g t h a t the r e s u l t i n g t o p i c s were meaningful f o r a l l p a r t i c i p a n t s (Anderson & Chung, 1982). The completion o f the data a n a l y s i s process was apparent when no other major conceptual c a t e g o r i e s were forthcoming from the data (Wilson, 1977).  D i e r s (1979) d e f i n e s the f o l l o w i n g  c h a r a c t e r i s t i c s as the " f i n i s h i n g touches t o data a n a l y s i s " : The mental process here i s t r y i n g to see d i f f e r e n t i n s t a n c e s of events as r e l a t e d , and l i n k i n g these i n s t a n c e s with bigger (more a b s t r a c t ) and bigger concepts -- names which f i t a l l the events w i t h i n t h a t a b s t r a c t i o n . One t r i e s t o reduce the volumes o f data c o l l e c t e d i n t o a meaningful handful o f named concepts ( p . 115). This l e v e l o f c o n c e p t u a l i z a t i o n w i t h i n the a n a l y t i c process i s a r t i c u l a t e d i n d e t a i l i n Chapter Four.  80 Ethical Considerations This study met the c r i t e r i a s p e c i f i e d by the U n i v e r s i t y o f B r i t i s h Columbia's Screening Committee f o r Research I n v o l v i n g Human S u b j e c t s . The r i g h t s o f the p a r t i c i p a n t s were p r o t e c t e d i n the f o l l o w i n g ways: The p a r t i c i p a n t s ' r i g h t to r e f u s e p a r t i c i p a t i o n was safeguarded by e n s u r i n g t h a t i n t e r v i e w s c o u l d only take p l a c e i f w r i t t e n consent was given f i r s t .  A d e s c r i p t i o n o f the study and  d e t a i l s of t h e i r expected p a r t i c i p a t i o n were presented to the p a r t i c i p a n t s both i n w r i t i n g and v e r b a l l y p r i o r to o b t a i n i n g t h e i r consent (Appendix A ) . A l l p a r t i c i p a n t s were a d v i s e d t h a t t h e i r p a r t i c i p a t i o n was v o l u n t a r y and t h a t they c o u l d withdraw from the study at any time.  They were assured t h a t withdrawal from the study would  have no e f f e c t on the treatment they r e c e i v e d . P r i o r to the i n i t i a l i n t e r v i e w , p a r t i c i p a n t s were informed t h a t they had the r i g h t to d e c l i n e to answer any q u e s t i o n s , to terminate the i n t e r v i e w , or to request erasure o f any tape or p o r t i o n o f a tape at any time d u r i n g the study. The p a r t i c i p a n t s were assured t h a t a l l of the taped m a t e r i a l would be kept anonymous and c o n f i d e n t i a l and t h a t a l l tapes would be erased a f t e r completion of the t h e s i s .  T r a n s c r i p t i o n s would  be coded with s u b j e c t i d e n t i t y known only to the r e s e a r c h e r . There would be no w r i t t e n m a t e r i a l t h a t used names i n connection with the study.  Access to the data would be l i m i t e d to the  81  r e s e a r c h e r and her a d v i s o r y  committee.  F i n a l l y , the p a r t i c i p a n t s were informed t h a t there were no expected r i s k s i n v o l v e d i n p a r t i c i p a t i n g i n the study. were a l s o no f i n a n c i a l remunerations.  There  Some p a r t i c i p a n t s d i d  acknowledge t h a t they found i t b e n e f i c i a l t o d i s c u s s t h i s experience with the r e s e a r c h e r . Summary This chapter has o u t l i n e d how the methodology was u t i l i z e d in t h i s study. presented.  The procedure o f s e l e c t i n g p a r t i c i p a n t s was a l s o  Methods o f c o n s t r u c t i n g accounts and data a n a l y s i s  were i l l u s t r a t e d , with regard to how they r e l a t e d to the chosen methodology.  In a d d i t i o n , the e t h i c a l c o n s i d e r a t i o n s necessary  to p r o t e c t t h e p a r t i c i p a n t s ' r i g h t s were d i s c u s s e d . The f o l l o w i n g chapter w i l l present the p a r t i c i p a n t accounts, which v i v i d l y i l l u s t r a t e these women's experiences i n making t h e i r d e c i s i o n s about b r e a s t r e c o n s t r u c t i o n .  82 CHAPTER FOUR Presentation of Accounts  Introduction This chapter focuses on the accounts o f the p a r t i c i p a n t s , i n which they d e s c r i b e t h e i r experiences with b r e a s t cancer and mastectomy, and t h e i r d e c i s i o n about b r e a s t r e c o n s t r u c t i o n . Chapter Four h i g h l i g h t s the major themes o f wholeness versus nonwholeness which r e c u r throughout each p a r t i c i p a n t ' s decision-making p r o c e s s . Loss of wholeness i s explored f i r s t by d e s c r i b i n g the p a r t i c i p a n t s ' emotional adjustment to cancer and mastectomy and t h e i r experiences wearing a p r o s t h e s i s . T h i s d e s c r i p t i o n i s followed by t h e i r accounts o f t h e i r search f o r wholeness.  This  includes t h e i r decision-making process r e g a r d i n g b r e a s t r e c o n s t r u c t i o n and the e s t a b l i s h m e n t o f the meaning o f t h e i r cancer e x p e r i e n c e .  S p e c i f i c aspects o f the decision-making  process d e t a i l e d i n these accounts i n c l u d e a c q u i r i n g i n f o r m a t i o n , weighing the consequences  of r e c o n s t r u c t i o n , and t h e i r p e r c e p t i o n  of t h i s surgery. Regaining wholeness r e p r e s e n t s the outcome of the p a r t i c i p a n t s ' decision-making process and i s explored next. The women's accounts o f t h e i r need to j u s t i f y t h e i r d e c i s i o n s and t h e i r u l t i m a t e recovery which r e q u i r e d l e a v i n g the cancer experience behind are presented.  These themes of l o s s of  wholeness, search f o r wholeness, and r e g a i n i n g wholeness,  then,  83  serve to add scope t o the explanation u n d e r l y i n g each participant's decision. For the purpose o f i n c r e a s i n g understanding p a r t i c i p a n t s ' decision-making,  o f the  the women's accounts o f wholeness  and non-wholeness a r e introduced by t h e i r d e s c r i p t i o n s o f t h e breast lump d i s c o v e r y , mastectomy and adjuvant experiences.  treatment  One cannot f u l l y comprehend the s i g n i f i c a n c e o f  each p a r t i c i p a n t ' s d e c i s i o n u n t i l t h i s cancer experience i s examined i n i t s e n t i r e t y . E s t a b l i s h i n g Context A l l p a r t i c i p a n t s presented t h e i r r e c o n s t r u c t i o n d e c i s i o n w i t h i n the context o f a s t o r y , d e s c r i b i n g t h e i r experience cancer i n a n a r r a t i v e form. diagnosis o f cancer.  with  The beginning o f t h e i r s t o r y was the  Next, the women d e s c r i b e d t h e i r r e a c t i o n s  to the p r o s p e c t i v e treatment p l a n . were important because they l a t e r  The p a r t i c i p a n t s ' r e a c t i o n s influenced t h e i r desire to  e i t h e r pursue o r r e f u s e b r e a s t r e c o n s t r u c t i o n .  This encounter  with cancer f o r c e d these women t o re-examine t h e meaning o f t h e i r 1i ves.  A l l p a r t i c i p a n t s demonstrated a need f o r g e t t i n g the f a c t s s t r a i g h t when they recounted t h e i r s t o r i e s . They had r e t a i n e d a d e t a i l e d memory o f the events t h a t took place during t h e i r d i a g n o s i s , mastectomy, and adjuvant therapy.  Every s t o r y was  t o l d c h r o n o l o g i c a l l y , i n terms o f the p a r t i c i p a n t s ' l i f e events during the cancer experience  r a t h e r than s p e c i f i c dates.  Several  84 p a r t i c i p a n t s c o u l d not remember the exact dates o f events and y e t t h e i r memories o f d i a g n o s i s , treatment, and coping with cancer were d e t a i l e d and v i v i d d e s p i t e the passage o f time. S t o r i e s t y p i c a l l y began with the p a r t i c i p a n t s ' d i s c o v e r y o f a b r e a s t lump. P.  -And t h i s time was j u s t a f l u k e and I don't know why. It j u s t f e l t d i f f e r e n t .  I j u s t went l i k e t h i s and  there i t [ t h e b r e a s t lump] was. that.  I thought I never do  I never undress i n f r o n t o f a m i r r o r .  I mean I  went i n and put my jeans on and I took my b r a s s i e r e o f f for some reason or another and there was t h i s lump.  P.  I was j u s t t a k i n g a bath and p u t t i n g talcum powder on. I kind o f moved i n a c e r t a i n way and j u s t happened t o glance down and there was a very t i n y lump.  I t was  only 2 cm but was r i g h t , almost c e n t r e . . . r i g h t there.  So t h e r e f o r e , i f i t had been underneath the  b r e a s t I never would have n o t i c e d i t .  P.  I woke up i n the middle o f the n i g h t and I turned over and f e l t t h i s lump with my hand and I woke up and shook my husband and s a i d , "Wake up, wake up q u i c k . cancer. . ."  I've got  Immediately a t t h a t moment I made up my  mind t h a t ' s what i t was. Although the m a j o r i t y o f the p a r t i c i p a n t s d i d not do r e g u l a r  85 s e l f b r e a s t examination, most o f the p a r t i c i p a n t s d i s c o v e r e d t h e i r own b r e a s t lump e i t h e r by chance or by s e l f - e x a m i n a t i o n . The remaining p a r t i c i p a n t s ' b r e a s t lumps were d i s c o v e r e d by t h e i r doctors. S t o r i e s r e l a t e d t o the s u r g i c a l experiences were v i v i d l y remembered because o f the trauma t h a t the m a j o r i t y o f the p a r t i c i p a n t s experienced.  Several p a r t i c i p a n t s b e l i e v e d t h a t  t h e i r breast lumps were benign because t h e i r doctors had reassured them t h a t cancer was u n l i k e l y . These women were not expecting to undergo a mastectomy and were t h e r e f o r e , not prepared f o r the shock o f l o s i n g a b r e a s t . P.  I was t o l d i t was not going t o come o f f . The n i g h t before I was t o l d i t was j u s t a matter o f a lump coming out o f my b r e a s t and under my arm and I would be f i n e . And then when I came to i t [ t h e b r e a s t ] was gone. And I think t h a t was a shock t h a t I might have got over f a s t e r i f I was prepared f o r i t .  P.  They [ t h e d o c t o r s ] d i d n ' t say, "Well, we'll t e s t i t then t e l l you and then i f you have t o have i t [ t h e b r e a s t ] removed t h e y ' l l l e t you know."  I t was j u s t  that I went i n there and they took i t [ t h e b r e a s t ] o f f and then when I came out and was i n recovery I was i n shock.  I asked the nurse because I kept jumping up and  down . . . what was wrong with me and she s a i d , "They  86  removed your b r e a s t , " and walked away. Another p a r t o f the cancer s t o r i e s r e v o l v e d around the d e s c r i p t i o n o f chemotherapy  and r a d i a t i o n e x p e r i e n c e s , which  n e c e s s i t a t e d postponement o f b r e a s t r e c o n s t r u c t i o n u n t i l p h y s i c a l recovery was complete.  The p h y s i c a l l y d e b i l i t a t i n g s i d e e f f e c t s  of these treatments added t o t h e s t r e s s these women experienced from the combined a s s a u l t o f cancer and mastectomy. P.  The chemotherapy's  hard on y o u . I l o s t a l l my h a i r and  you j u s t f e e l t e r r i b l e .  When you're t a k i n g t h a t and  other s t u f f t h a t they've given you and t h i s i s a l l happening t o you, w e l l , you're bound t o be depressed.  P.  I was f r a n t i c as t o how I was going t o manage when I was p h y s i c a l l y so ill . . . I know I t r i e d t o climb the s t a i r s one day a f t e r I had the c o b a l t treatment and I c o u l d n ' t g e t up the s t a i r s .  The d i f f i c u l t i e s imposed upon women undergoing adjuvant therapy were i n f l u e n t i a l i n t h e i r d e c i s i o n r e g a r d i n g b r e a s t reconstruction.  F o r some women, t h i s adjuvant therapy i n h i b i t e d  the d e s i r e f o r r e c o n s t r u c t i o n . These women were unable t o contemplate any f u r t h e r surgery u n t i l t h e hurdle o f adjuvant therapy was behind them.  Others were not s i m i l a r l y a f f e c t e d and  planned t o undergo r e c o n s t r u c t i o n d e s p i t e t h e i r ongoing adjuvant therapy.  P a r t i c i p a n t s , t h e r e f o r e , had t o contend with t h e  e f f e c t s o f adjuvant therapy w h i l e c o n s i d e r i n g b r e a s t  87 reconstruction. P.  I was under chemotherapy f o r a year and a h a l f and d i d n ' t think too much about r e c o n s t r u c t i o n a t t h a t point e i t h e r .  The l a s t s i x months you're f a i r l y wiped  out anyway . . . And then i t takes you another s i x months a f t e r t h a t t o recover.  P.  So I s t i l l wasn't l o o k i n g a t r e c o n s t r u c t i o n .  I was  j u s t g l a d t h a t I was no longer t a k i n g chemotherapy and was able to hold down a j o b and s t a r t t o f e e l t h a t I was well a g a i n .  P.  Then when they t o l d me I had t o take chemotherapy f o r a year . . . w e l l , I was so s i c k f o r t h a t year . . . i t was bad. I thought o f i t but t h a t i s n ' t anything.  I  j u s t wanted them to g e t over with the chemotherapy ...  I knew I was going t o do i t [have b r e a s t  r e c o n s t r u c t i o n ] as soon as somebody s a i d O.K. In a d d i t i o n t o r e c i t i n g s t o r i e s about d i s c o v e r y o f the lump, mastectomy, and adjuvant therapy, the m a j o r i t y o f p a r t i c i p a n t s placed the events o f d i a g n o s i s and mastectomy w i t h i n the context of other concurrent l i f e events, which a s s i s t e d them i n r e c a l l i n g the experience and i t s a s s o c i a t e d meaning. P.  And then my doctor happened t o be away t h a t day and I was seen by one o f h i s partners . . . h i s face . . .  I  88 should have known. He t r i e d to e x c i s e . . . e x t r a c t f l u i d from the lump . . . and he seemed very upset t h a t he c o u l d n ' t . . . Christmas was coming and I was having a huge engagement p a r t y f o r my daughter and son-in-law.  I had my f r e e z e r groaning with l i t t l e  quiches and I had a l l my Christmas shopping done.  My  f r i e n d s f e l t I had a premonition but I d i d n ' t .  P.  I d i s c o v e r e d i t [the b r e a s t lump] I guess probably i n about . . . l e t me t h i n k . . . I would say probably around June and they got the bed about J u l y . Then they c a n c e l l e d i t and then w h i l e I was w a i t i n g f o r the bed we'd gone up to P e n t i c t o n f o r a l i t t l e h o l i d a y and I was so cranky with the k i d s and i r r i t a b l e with the hepatitis.  Everytime I looked sideways my eyes would  hurt and I'd i t c h a l l over.  P.  Because I'd a l r e a d y had a hysterectomy you see, y e a r s before t h a t .  I had no r e a c t i o n to the r a d i a t i o n a t a l l  . . . j u s t the chemo but t h a t threw me i n t o menopause . . . There was a l o t of s t r e s s a t t h a t time with moving here and then I l o s t my job through having i t [ b r e a s t c a n c e r ] because I wasn't able to c o n c e n t r a t e . . . And s i n c e I was the l a s t one h i r e d I was the f i r s t one to go.  89 Loss o f Wholeness A key theme t o be d i s c u s s e d i n t h i s s e c t i o n i s l o s s o f wholeness.  The p a r t i c i p a n t s ' perceptions o f t h e i r wholeness  seems t o have been a major i n f l u e n c e on t h e i r d e c i s i o n about breast r e c o n s t r u c t i o n .  T h i s perception o f wholeness appeared t o  be both p h y s i c a l and mental.  In these accounts,  feelings of  wholeness seemed t o be i n f l u e n c e d by the values and f e e l i n g s each woman had about her b r e a s t s .  The more her self-esteem and sense  of body image were a s s o c i a t e d with i n t a c t b r e a s t s , the more l i k e l y a woman was t o f e e l a l a c k o f wholeness a f t e r her mastectomy.  However, there was no way o f p r e d i c t i n g p r i o r t o her  mastectomy the degree o f l o s s o f wholeness a p a r t i c i p a n t was going t o f e e l . The m a j o r i t y o f p a r t i c i p a n t s r e f e r r e d , d i r e c t l y o r i n d i r e c t l y , t o t h e i r wholeness when they t a l k e d about the e f f e c t s of mastectomy on t h e i r l i v e s .  Of the women who chose b r e a s t  r e c o n s t r u c t i o n , most claimed they d i d not f e e l whole a f t e r t h e i r surgery, even while wearing a p r o s t h e s i s .  They c o u l d not  i n c o r p o r a t e the p r o s t h e s i s i n t o t h e i r body image because they f r e q u e n t l y took i t o f f .  On the other hand, two women who decided  a g a i n s t b r e a s t r e c o n s t r u c t i o n f e l t a p r o s t h e s i s was a s u i t a b l e replacement.  These women appeared t o have l e t go o f the missing  breast and, with the help o f the p r o s t h e s i s , r e i n t e g r a t e d t h e i r body image i n t o a whole. The l o s s o f wholeness was a theme t h a t r e c u r r e d throughout  90 the p a r t i c i p a n t s ' adjustment and was then c a r r i e d on i n t o the decision-making p r o c e s s , which became an a l l - p o w e r f u l search f o r wholeness. P.  No, you are incomplete.  H a l f o f you i s gone.  P.  When t h i s cropped up i t j u s t t o t a l l y destroyed t h a t image of myself of being an a t t r a c t i v e female person.  P.  And t h a t was my f e e l i n g I j u s t , i t d i d n ' t matter what, I j u s t d i d n ' t f e e l r i g h t , there was something wrong with me.  No matter where I was I thought about i t .  R e f l e c t e d w i t h i n the key theme of l o s s o f wholeness are the two subthemes of emotional adjustment to cancer and mastectomy and the p r o s t h e s i s e x p e r i e n c e .  These important aspects o f l o s s  of wholeness w i l l be d i s c u s s e d next. Emotional Adjustment to Cancer and Mastectomy This s e c t i o n d e s c r i b e s the p a r t i c i p a n t s ' emotional responses to the l o s s of wholeness r e s u l t i n g from t h e i r encounter with cancer.  These r e a c t i o n s i n c l u d e a t t i t u d e s , f e e l i n g s , and  behaviors.  Every p a r t i c i p a n t v i v i d l y remembered her f e e l i n g s i n  r e l a t i o n to the cancer and b r e a s t l o s s .  Although r e a c t i o n s  v a r i e d i n i n t e n s i t y , the m a j o r i t y of p a r t i c i p a n t s f e l t t h a t the emotional experience of having cancer was worse than t h a t o f having a mastectomy. P.  The l o s s of the b r e a s t d i d n ' t h i t me . . . no, i t was  91  the word cancer. end.  P.  Cancer represented death.  I t was the  That was the way I f e l t .  Because i t was something I c o u l d n ' t do anything about, no matter how hard I worked or no matter how much I tried.  Cancer c e l l s . . . they were i n my body and I  could not stop them m u l t i p l y i n g .  P.  Or have I got cancer somewhere e l s e i n my body and I r e a l l y think t h a t was the worst p a r t f o r me . . . yeah more than the l o s s .  I j u s t wanted them to t e l l me t h a t  e v e r y t h i n g was going t o be O.K. with me and t h a t I was going t o be f i n e . The presence o f f e a r and h e l p l e s s n e s s as a r e s u l t o f the d i a g n o s i s o f cancer was a common theme i n the women's n a r r a t i v e s . P.  I thought t h a t would never happen t o me but i t d i d . I was f r i g h t e n e d . So I f i g u r e d well t h i s was i t then.  I  was going to d i e and t h a t was a l l there was to i t . . . I t was s c a r y .  I thought I was i n h e l l . . . and I was  paranoid.  P.  I went through real r o l l e r - c o a s t e r f e e l i n g s , I mean there would be days when I would f e e l , I am going t o beat t h i s . . . I am not going t o l e t t h i s get me down . . . and I'm going t o be f i n e . . . and then other  92 days ...  I mean I'm going to die anyway . . . d i e  t h i s h o r r i b l e death and maybe I should j u s t check out now. Some women, however, d i d not present cancer as the most upsetting.  For them, the mastectomy was an even more  emotionally  p a i n f u l experience. P.  I mean nobody would want to l o s e an arm or a l e g but they probably wouldn't f e e l any worse l o s i n g an arm  or  a l e g [than they would] l o s i n g a breast.  P.  I guess I was i n shock a f t e r I had the mastectomy. When I got out of the h o s p i t a l I was angry. f e l t ripped o f f . . . why  I just  me?  One p a r t i c i p a n t acknowledged t h a t the l o s s o f her breast was more traumatic than the p o t e n t i a l l o s s of l i f e from cancer. P.  ...  So, no, the f e a r of l o s i n g my breast was much  more present than the f e a r o f l o s i n g my l i f e to cancer. She went on to say t h a t the mastectomy might have been too high a p r i c e to pay i n r e l a t i o n to the q u a l i t y of her P.  In f a c t i f I had not had t h a t [ b r e a s t  life. reconstruction]  as a p o s s i b i l i t y or as a d e f i n i t e p r o b a b i l i t y I might not have had the surgery because I was so a f r a i d of what i t would do to my  life.  A v a r i e t y of behaviors were described as i n d i c a t i v e of f e e l i n g s of g r i e f over the m u l t i p l e l o s s e s s u f f e r e d because of  93 the cancer e x p e r i e n c e s . P.  I'd s i t i n my room and c r y and o f t e n I d i d n ' t f e e l l i k e I c o u l d t e l l anybody.  P.  L i k e I s a i d i t was about a y e a r . . . ten to eleven months I guess before I d i d smarten up.  But a l l I d i d  was take a l o t o f p i l l s , a s p i r i n s , 292's, or a n y t h i n g I c o u l d get my hands on.  I'd d r i n k a l o t ...  I still  drink a l o t compared to what I used to b e f o r e . In c o n t r a s t , a few p a r t i c i p a n t s claimed t h a t they d i d not experience a sense o f g r i e f as a r e s u l t o f the mastectomy.  The  f o l l o w i n g women d i s c u s s e d t h e i r f e e l i n g s i n terms of what they did not e x p e r i e n c e . P.  I j u s t was very, very lucky t h a t I d i d n ' t go i n t o any kind of d e p r e s s i o n .  I j u s t c o u l d n ' t see what the  purpose o f i t would be.  I t i s n ' t going to help any.  . . . and e s p e c i a l l y a f t e r I had been through the cancer c l i n i c and been t o l d there was no need f o r any treatment . . . t h a t r e a l l y made me f e e l very buoyant and p o s i t i v e .  P.  I never r e a l l y looked a t i t as a l o s s . as the b r e a s t was secondary ...  I looked a t i t  To me what was the  most important t h i n g was to get r i d o f the cancer so they got r i d of the b r e a s t , which was i n c i d e n t a l to me.  94  P.  I t j u s t d i d n ' t bother me.  I j u s t f e l t I was going to  have to l i v e with t h a t . . . . You don't bother saying "why me" s o r t o f t h i n g .  You know t h a t ' s happened and  you're a l i v e and well and t h a t ' s the main t h i n g .  P.  I don't b e l i e v e I r e a l l y d i d g r i e v e . . .  I t was  c o n s t a n t l y there . . . you had t o e i t h e r accept i t o r you would have had to l e t i t bother you. And I accepted i t and t h a t was i t . Period . . .  I know some  women don't want to see the scar . . . the f i r s t d r e s s i n g change i s traumatic and a l l o f t h i s and I d i d n ' t r e a l l y f e e l any o f t h a t .  I knew what i t was  going to look l i k e and when I saw i t my f i r s t r e a c t i o n was t h a t ' s a f i n e piece o f surgery.  I t was a b e a u t i f u l  piece o f surgery. This lack o f negative r e a c t i o n s revealed a p o s i t i v e a t t i t u d e t h a t gave these women a d i f f e r e n t p e r s p e c t i v e on t h e i r cancer and mastectomy experiences.  These p a r t i c i p a n t s f e l t t h a t such an  a t t i t u d e may have been instrumental i n h e l p i n g them accept t h e i r mastectomy and cancer more e a s i l y . The p a r t i c i p a n t s thus d e s c r i b e d v a r i a t i o n s i n t h e i r emotional  experiences and a t t i t u d e s toward cancer and the  mastectomy experience.  I t seemed as i f there was a range o f  g r i e f responses, f a l l i n g somewhere between the two extremes: f e e l i n g " t o t a l l y traumatized" by the l o s s o f the b r e a s t , as  95 opposed t o f e e l i n g " r e l i e f " t h a t the mastectomy e r a d i c a t e d the cancer. Prosthesis  Experience  The p r o s t h e s i s experience s u r f a c e d as a major subtheme f o r a l l o f the p a r t i c i p a n t s i n t h i s study.  Depending on the  experience she had had with her p r o s t h e s i s , each woman d e s c r i b e d i t as a s t r o n g l y negative or s t r o n g l y p o s i t i v e i n f l u e n c e on her a t t i t u d e s about the mastectomy experience i n g e n e r a l .  As a  r e s u l t , the p r o s t h e s i s a l s o appeared to have a c o n s i d e r a b l e impact on the p a r t i c i p a n t s ' decision-making breast r e c o n s t r u c t i o n .  process  regarding  F e e l i n g s expressed i n r e l a t i o n t o the  p r o s t h e s i s were predominantly  negative and focused on the  p h y s i c a l uncomfortableness o f the b r e a s t form.  F o r example  almost a l l the p a r t i c i p a n t s complained o f how hot the p r o s t h e s i s was to wear when the p l a s t i c m a t e r i a l was i n c o n t a c t with t h e i r skin.  This was e s p e c i a l l y bothersome i n the summer. P.  Your b r e a s t form i s h o t , i t ' s s t i c k y , i t ' s uncomfortable.  I t r i d e s up, i t p u l l s down.  Several p a r t i c i p a n t s acknowledged t h a t they were unable t o buy a breast form t h a t f i t comfortably.  Women who were very  small-breasted or l a r g e - b r e a s t e d tended to experience poor f i t . The weight o f the p r o s t h e s i s was a l s o a d e f i n i t e disadvantage t o those p a r t i c i p a n t s who had l a r g e b r e a s t s .  The dead weight o f the  p r o s t h e s i s induced shoulder and back aches and a f e e l i n g o f being off-balance.  96  P.  And another t h i n g was the weight.  I t always f e l t l i k e  i t was p u l l i n g your arm down you know so you f e l t l i k e you were packing an e x t r a weight around. Other complaints or d i f f i c u l t i e s expressed were s k i n i r r i t a t i o n and s h i f t i n g o f the form d u r i n g a c t i v i t y . P.  One o f the t h i n g s t h a t I keep s a y i n g i s t h a t I hated, I hated the whole business o f having to put t h a t p r o s t h e s i s i n every day and take i t out and having to deal with i t d u r i n g the day as i t s o r t o f s l i p s and makes b l i s t e r s .  P.  I t was very awkward.  Or you're doing e x e r c i s e s i n an e x e r c i s e c l a s s and your bra doesn't q u i t e f i t the p r o s t h e s i s or you haven't bothered sewing a l i n i n g i n . . . oh God, the t h i n g s t a r t s to s l i p - well you know you're i n t r o u b l e then.  P.  I t was s h i f t i n g around and then one day at work - I don't wear t i g h t - f i t t i n g c l o t h e s but I have a dress on that was r a t h e r form f i t t i n g on top and when I was walking down one o f the h a l l s one of the other s t a f f members s a i d to me "Well, you've got one up and one down".  F e e l i n g s o f s e l f - c o n s c i o u s n e s s added y e t another burden to women a l r e a d y bothered by t h e i r p r o s t h e s e s ' p h y s i c a l l i m i t a t i o n s . P.  I can remember one evening my husband s a y i n g to me  97 . . . "Be c a r e f u l how you lean and which s i d e you s i t on with people because i t ' s obvious."  People j u s t  look, e s p e c i a l l y i f they know you've had an o p e r a t i o n .  P.  I f you're going t o a r e c r e a t i o n c e n t r e o r k e e p - f i t c l a s s e s you're changing i n one b i g change room and I always f e l t very s e l f - c o n s c i o u s e s p e c i a l l y i f there were people who d i d n ' t know I'd had the mastectomy. I'd always make sure I was the l a s t person t o g e t changed or hide myself some p l a c e where no one would see me or go i n the washroom and get changed i n t h e r e .  P.  I was swimming about three times a week r i g h t up u n t i l I had the mastectomy and then a f t e r I d i d n ' t do q u i t e so much but I . . .  i t was the changing room . . .  dropping t h i s g r e a t two p i e c e s .  I t was l i k e a bean bag  you know. That's i t , they a r e so clumsy.  L i k e there  was s o r t o f no easy way to grasp the t h i n g and there i s a space underneath the changing room door o f about two f e e t I think . . . Always conscious t h a t people might be offended o r shocked. The women who e x e r c i s e d r e g u l a r l y appeared to experience the most problems with the embarrassment o f undressing i n p u b l i c places.  Swimming, i n p a r t i c u l a r , presented d i f f i c u l t y due to the  tendency o f the p r o s t h e s i s to f a l l away from the c h e s t c a u s i n g  98 the b a t h i n g s u i t to gape when the p a r t i c i p a n t bent over. Inconvenience was a l s o a s t a r k r e a l i t y .  A l l participants  who underwent b r e a s t r e c o n s t r u c t i o n emphasized t h i s ; many r e f e r r e d to the p r o s t h e s i s as a nuisance. P.  You've [ g o t t o ] take i t i n , take i t out, go take a bath, take i t o f f , change your bra - put i t i n the pocket, take i t out o f the pocket.  The p r o s t h e s i s a l s o l i m i t e d a m a j o r i t y o f the women's freedom o f c h o i c e i n s e l e c t i n g c l o t h i n g .  A l a r g e percentage o f  the p a r t i c i p a n t s dressed more c o n s e r v a t i v e l y a f t e r t h e i r mastectomy.  Some o f the p a r t i c i p a n t s found t h a t even with a  modified mastectomy there was a d e p r e s s i o n i n the c l a v i c u l a r area where the lymph nodes had been removed.  With a r a d i c a l  mastectomy there was a much more n o t i c e a b l e d e f e c t . These women tended to wear c l o t h e s with higher n e c k l i n e s and ample s l e e v e s to camouflage t h e i r asymmetry.  Women who d i d not wear r e v e a l i n g  c l o t h i n g p r i o r to mastectomy were l e s s a f f e c t e d by the l i m i t a t i o n s o f c h o i c e i n c l o t h i n g s t y l e s when they began wearing a prosthesis. P.  A f t e r the o p e r a t i o n was over - a l o t o f my c l o t h e s didn't f i t .  P.  I t was a l o t to get used t o .  When I would look a t these low-plunging t h i n g s and think oh - gee how awful - i f I c o u l d j u s t wear one o f those and you r e a l l y long to wear the dresses t h a t  99 are.  You seem to long to wear them more than you  did before.  ever  You never remember c a r i n g t h a t much  before. The p a r t i c i p a n t s ' accounts serve to h i g h l i g h t the inadequacies  of the p r o s t h e s i s .  I t i s i n t e r e s t i n g to note t h a t  those p a r t i c i p a n t s who chose to have b r e a s t r e c o n s t r u c t i o n d i d not mention any p o s i t i v e aspects of the p r o s t h e s i s .  In marked  c o n t r a s t , a l l three p a r t i c i p a n t s who d e c l i n e d b r e a s t r e c o n s t r u c t i o n f e l t t h a t the p r o s t h e s i s was p r i m a r i l y b e n e f i c i a l . R.  So the one [ p r o s t h e s i s ] t h a t you have now i s comfortable.  P.  Oh y e s , no problem a t a l l . there.  You don't even know i t ' s  I t ' s as I say, i t s o r t o f takes on the warmth  of the body and even to touch . . . someone e l s e wouldn't even know.  I t doesn't f e e l a r t i f i c i a l .  You  touch one and then you touch the other and you r e a l l y wouldn't know which i s which.  R.  No, you seem p e r f e c t l y content with the p r o s t h e s i s .  P.  Right, r i g h t . them.  Except f o r the money I have to pay f o r  It's terrible.  I t seems t h a t the way i n which a p a r t i c i p a n t perceived  and  reacted to the p r o s t h e s i s may have had r a m i f i c a t i o n s f o r the decision-making  process.  Women who were u n s a t i s f i e d with the  p r o s t h e s i s appeared to be more a t t r a c t e d to the option of  100  r e c o n s t r u c t i o n than were those women who experienced  no problems  with the p r o s t h e s i s . The f o l l o w i n g s e c t i o n shows how f e e l i n g s o f non-wholeness, d i s s a t i s f a c t i o n with the p r o s t h e s i s , and information  received  about breast r e c o n s t r u c t i o n c o n t r i b u t e d to an i n c r e a s e i n the awareness and readiness o f p a r t i c i p a n t s to c o n s i d e r  breast  reconstruction. Search f o r Wholeness P a r t i c i p a n t s d e s c r i b e d f e e l i n g l e s s whole as a r e s u l t o f mastectomy, r e s u l t i n g i n f e e l i n g l e s s normal.  As a r e s u l t o f  t h i s the p a r t i c i p a n t s ' self-esteem d e c l i n e d , which i n turn a f f e c t e d the q u a l i t y o f t h e i r l i v e s .  The trauma a s s o c i a t e d with  t h i s l a c k o f wholeness d i d not d i s s i p a t e over time f o r many o f the p a r t i c i p a n t s . that culminated P.  Instead, i t c a t a l y z e d a search f o r wholeness  i n the s e c u r i n g o f b r e a s t  reconstruction.  I want e v e r y t h i n g done - I want t o f e e l normal and I don't mind how much surgery I have.  I wish t o f e e l a  whole person again.  P.  But i t [ l a c k o f natural b r e a s t s ] d i d make me f e e l bad and t h a t ' s why I wanted to go through with the b r e a s t r e c o n s t r u c t i o n . . . Because I f e l t l i k e I wanted something i n the spot where my breasts were and you know, b a s i c a l l y t h a t ' s what I l i v e d f o r .  A l l p a r t i c i p a n t s appeared to rate themselves as e i t h e r  101  f e e l i n g whole o r l a c k i n g i n wholeness a f t e r t h e i r mastectomy. None o f the p a r t i c i p a n t s reported t h a t t h i s p a r t i c u l a r f e e l i n g changed over the course o f time.  When women f e l t a lack o f  wholeness post-mastectomy t h i s remained c o n s i s t e n t .  Similarly,  those who f e l t whole f o l l o w i n g mastectomy continued t o f e e l whole. Some o f the p a r t i c i p a n t s chose t o proceed with  breast  r e c o n s t r u c t i o n surgery i n s p i t e o f f e e l i n g whole and, c o n v e r s e l y , a p a r t i c i p a n t who r e f u s e d b r e a s t r e c o n s t r u c t i o n claimed she d i d not f e e l whole.  Therefore, while there was not a c o n s i s t e n t l i n k  between a l a c k o f f e e l i n g whole and the need t o pursue b r e a s t r e c o n s t r u c t i o n , i t appears t h a t the idea o f r e c o n s t r u c t i o n was more appealing t o those women who d i d not f e e l whole with one breast.  Those p a r t i c i p a n t s who reported f e e l i n g devastated by  f e e l i n g s o f non-wholeness a l s o seemed t o experience  the most  d i f f i c u l t y a c c e p t i n g the p h y s i c a l experience o f the mastectomy scar.  I t i s d i f f i c u l t t o know with any c e r t a i n t y whether the  women who f e l t whole with only one b r e a s t have a more f l e x i b l e body image.  I f so, t h i s may account i n p a r t f o r t h e i r being able  to i n c o r p o r a t e the p h y s i c a l changes from the mastectomy without l o s i n g a sense o f wholeness. The f o l l o w i n g p a r t i c i p a n t s who refused r e c o n s t r u c t i o n  felt  they had no need f o r i t because they continued t o f e e l whole f o l l o w i n g the l o s s o f t h e i r b r e a s t . P.  L i k e I s a i d , I wasn't r e a l l y t h a t i n t e r e s t e d . . . I  102  feel q u i t e content the way I am.  P.  I f he would have come along with the suggestion w i t h i n the f i r s t y e a r , which he d i d n ' t . . . well with t h i s he waited f i v e years . . . and he s a i d well would you . . . have you considered i t ? thought . . .  I hadn't even given i t a  i t wasn't t h a t important t o me.  Unlike the above p a r t i c i p a n t s , there were women who i n s p i t e o f f e e l i n g whole with one b r e a s t underwent b r e a s t r e c o n s t r u c t i o n . P.  So I d i d n ' t break down o r anything and I d i d n ' t f e e l a t the time t h a t I was changing p s y c h o l o g i c a l l y o r was having these things l i k e God I'm not whole o r whatever so t h a t ' s why I l i k e t o think t h a t I added a new dimension t o my psyche.  R.  When you had a mastectomy, d i d i t a f f e c t y o u r f e e l i n g s of wholeness?  P.  D i d you f e e l s o r t o f any l e s s whole?  No, I would have expected t o f e e l t h a t way b u t I d i d n ' t and I can only a t t r i b u t e i t t o having been f l a t - c h e s t e d f o r so long . . .  I have t a l k e d t o women who d i d f e e l  t h a t way and say t h i n g s l i k e you're h a l f a woman . . . I j u s t wanted t o t e l l them I was not a s i d e o f beef o r a piece o f meat, I was a woman . . . But I r e a l l y sometimes don't think I'm normal i n t h a t way. It i s i n t e r e s t i n g t h a t she expected t o f e e l l e s s whole and  103  formulated a reason to e x p l a i n perhaps why she d i d not have t h i s normal r e a c t i o n .  She seemed to f e e l t h a t her breasts had never  been an important p a r t o f her p e r c e i v e d body image i n the past. Therefore, she d i d not f e e l d i f f e r e n t e i t h e r as an i n d i v i d u a l or as a woman f o l l o w i n g the l o s s o f her b r e a s t . One* p a r t i c i p a n t expressed s u r p r i s e a t how much the l o s s o f a breast a f f e c t e d her sense o f wholeness.  This lack o f wholeness  a f f e c t e d her sense o f emotional w e l l - b e i n g and these f e e l i n g s overpowered her i n t e l l e c t u a l sense, which t o l d her she was not a d i f f e r e n t person a f t e r the mastectomy. P.  I seem to be a w f u l l y f i x a t e d on these l i t t l e f a t t y globs on my c h e s t , I don't know. But you know I sometimes wonder i f t h a t i s normal ...  I don't l i k e  to t h i n k t h a t I am o v e r l y f i x a t e d on my b r e a s t s or o v e r l y concerned with my body, or o v e r l y v a i n , but I seem to have a l l o f t h a t i n my make-up. The mastectomy scar was v i s u a l l y d i s t u r b i n g to several p a r t i c i p a n t s and was a c o n t i n u a l reminder of t h e i r lack o f p h y s i c a l wholeness.  A common behavior was avoidance of l o o k i n g  into m i r r o r s , to the extent o f c o v e r i n g them with a towel  while  undressing or bathing. P.  No, I guess I never bothered to look i n the m i r r o r a t i t too o f t e n . . . and i t was a mess.  P.  I t j u s t made me feel bad . . . when I came out of the  bath there was a g r e a t b i g m i r r o r there and you saw y o u r s e l f as you got out. ... died.  When I had the o p e r a t i o n  the f i r s t bath I'd taken . . .  I j u s t about  I put a towel up over i t [ m i r r o r ] every bath I  took a f t e r t h a t so I c o u l d n ' t see myself . . . bothered me t o look.  i t even  I c o u l d n ' t wait t o g e t my  b r a s s i e r e and c l o t h e s on . . .  I t reminded me o f one o f  those one-eyed c y c l o p s e s . One p a r t i c i p a n t who r e f u s e d b r e a s t r e c o n s t r u c t i o n d i d not feel whole with o n l y one b r e a s t . She t a l k e d about how she f e l t when she was not wearing the p r o s t h e s i s . P.  I feel okay as l o n g as I don't walk around the house ...  as l o n g as I am under the c o v e r s , can't see  anything. R.  But t o look down a t y o u r s e l f , then i t bothers you?  P.  Yes.  R.  Has there been any change a t a l l i n as f a r as your s e l f - e s t e e m i s concerned, how you f e e l about y o u r s e l f ?  P.  I don't . . . anymore.  I never f e l t the same about myself  Not l i k e I used t o .  The powerful d r i v e t o r e g a i n wholeness was a l s o manifested in the d e c i s i o n o f those p a r t i c i p a n t s who underwent n i p p l e reconstruction.  Almost a l l women who underwent b r e a s t  r e c o n s t r u c t i o n t a l k e d about the need and r i g h t t o have t h e i r bodies r e s t o r e d to a normal s t a t e , as they were before the  105  mastectomy.  They f e l t s t r o n g l y t h a t women would not be born with  the p o t e n t i a l f o r developing two breasts and n i p p l e s unless they were meant to have them. P.  'Cause I mean everybody's g o t a n i p p l e . . . And so I'm pleased t h a t I had i t done.  P.  I j u s t want t o have two breasts with two n i p p l e s with aerolas t h a t a r e the same s i z e more o r l e s s , with n i p p l e s t h e same s i z e t h a t a r e both i n t h e same direction.  P.  I would never have been s a t i s f i e d j u s t t o stay with i t [ b r e a s t mound] without t h e r e s t o f i t , t h e n i p p l e . I would have f e l t j u s t not as whole as I d i d before.  P.  L i k e I c o u l d n ' t b e l i e v e i t when I woke up and saw the two n i p p l e s and e v e r y t h i n g .  I was j u s t dancing a l l  over the p l a c e . Having a n i p p l e t o r e p l a c e the one t h a t they had l o s t was paramount t o these women. P a r t i c i p a n t s who underwent n i p p l e r e c o n s t r u c t i o n needed t h e i r r e c o n s t r u c t e d b r e a s t t o appear p h y s i c a l l y whole before they could feel mentally whole. In keeping with the d i f f e r e n t degrees o f wholeness f e l t by p a r t i c i p a n t s , two women were able t o f e e l whole with j u s t the breast mound and d i d not r e q u i r e a r e c o n s t r u c t e d n i p p l e .  106  While the d e s i r e f o r wholeness was not the s o l e f a c t o r t h a t i n f l u e n c e s post-mastectomy women to decide i n favour o f b r e a s t r e c o n s t r u c t i o n , i t i s c l e a r t h a t i t was a c r i t i c a l f a c t o r f o r some p a r t i c i p a n t s . P.  Well I think when I i n i t i a l l y , when the doctor s a i d do I want t o go I s a i d O.K. . . And then you s t a r t the process . . . because well maybe he can make my l i f e better.  P.  I think anything i s b e t t e r than nothing . . . I've got nothing t o l o s e and i f anything I'm g a i n i n g .  P.  That was why I wanted the r e c o n s t r u c t i o n done.  I t was  a l l p a r t o f the process o f p u t t i n g my l i f e back together. These statements r e f l e c t the o v e r a l l meaning t h a t wholeness made to these women's l i v e s .  The f o l l o w i n g s e c t i o n explores how the  p a r t i c i p a n t s made sense o f cancer i n r e l a t i o n t o themselves. E s t a b l i s h i n g Meaning An important  p a r t o f the women's search f o r wholeness was  r e l a t e d to t h e i r process o f e s t a b l i s h i n g meaning. As the women described t h e i r r e a c t i o n s they i n f e r r e d a search f o r meaning t h a t took place as they were r e a c t i n g to and a d j u s t i n g t o the cancer and mastectomy.  Part o f t h i s "search f o r meaning" i n v o l v e d  comparing cancer to other  misfortunes.  107 P.  Because I feel with t h i n g s l i k e t h a t . . . worse t h i n g s have happened t o other people . . . through l i f e we're a l l going t o g e t something one way o r another and t h i s was perhaps a l o t e a s i e r than some t h i n g s . . . I t ' s not l i k e an arm o r l e g o r an eye.  P.  So i f i t i s n ' t a mastectomy, cancer, i t ' s a h e a r t attack. else.  I f i t i s n ' t a h e a r t a t t a c k , i t i s something There a r e very few t h a t l i v e r i g h t through  without having something go wrong.  P.  A f t e r awhile you get over the hurt o f seeing y o u r s e l f f l a t on one s i d e . . . I used to s i t and c r y f o r hours but i t d i d n ' t do me any good so I q u i t . . .  l i k e I say  you have t o look around and there a r e a l o t o f people worse o f f . As they compared themselves t o other people and other s i t u a t i o n s , they concluded, "I c o u l d be worse o f f . " Meaning was found through p u t t i n g t h e i r s i t u a t i o n i n p e r s p e c t i v e with other seemingly worse ones.  T h e i r c u r r e n t i l l n e s s experience was  c o n c e p t u a l i z e d a c c o r d i n g to what they knew w i t h i n t h e i r own lives.  No one e l s e but the woman h e r s e l f c o u l d develop t h i s  workable personal p e r s p e c t i v e . In a d d i t i o n t o p l a c i n g i t i n p e r s p e c t i v e with other peoples' e x p e r i e n c e s , p a r t i c i p a n t s looked a t the  cancer-mastectomy  108 experience i n terms o f i t s r e l a t i o n t o t h e i r own eventual death. Given cancer's real and imagined l i n k with death, t h i s i s not surprising.  The women experienced a heightened awareness o f the  p o s s i b i l i t y o f dying before they had expected t o . P.  We a l l have t o d i e sometime but you know when you've never r e a l l y had anything s e r i o u s l y wrong with you then you g e t t h i n k i n g along those l i n e s and i t ' s depressing.  P.  You're not t h a t o l d .  But then i f you have t o d i e . . . I always say when my time comes and t h e good Lord taps h i s hand on my shoulders and says you're coming, I'm going t o say, "I'm coming.  I'm coming."  I'm not going t o argue with  Him. These women responded by a p p r e c i a t i n g l i f e more f u l l y .  They  could not a f f o r d the l u x u r y o f becoming complacent and t h i n k i n g that there would always be enough time t o accomplish l i f e ' s d e s i r e d g o a l s . Time and the r e l a t e d q u a l i t y o f l i f e seemed more precious with the r e a l i z a t i o n t h a t they may not l i v e t o o l d age. P.  I t h i n k I t r y harder.  I t h i n k you're more w i l l i n g t o  take each day as i t comes . . . know t h a t l i f e i s not here f o r e v e r . You've got t o enjoy y o u r s e l f now today, not p u t o f f doing i t t o next week.  I f you want t o do  something you've g o t t o do i t now. Thinking about t h e i r own death, then, was an i n t e g r a l p a r t o f the  109  p a r t i c i p a n t s ' process of d i s c o v e r i n g the meaning of cancer. Another f a c e t of f i n d i n g meaning was to f i n d p o s i t i v e aspects of the cancer e x p e r i e n c e .  Several p a r t i c i p a n t s  d i s c o v e r e d unsuspected s t r e n g t h s i n themselves, developed more meaningful r e l a t i o n s h i p s with o t h e r s , or changed t h e i r a t t i t u d e toward 1i f e . P.  And I feel because I've had i t [ c a n c e r ] I've met so many n i c e people i n v o l v e d with the r e h a b i l i t a t i o n programme . . . and i f I hadn't had i t I wouldn't have ever met a l l those n i c e people.  And i t i s s p e c i a l i n a  way.  P.  I a l s o see t h a t people are l i v i n g i n a world t h a t e v e r y t h i n g i s so, [pause] means so much to them, l i k e money and w o r l d l y t h i n g s . . . They don't [mean] as much to me . . .  I'd r a t h e r go on a h o l i d a y somewhere  or go with my husband or be with my f a m i l y than [have] a spanking new house and [be] s i t t i n g i n i t f o r myself. These statements r e f l e c t p o s i t i v e aspects of the cancer experience, s i g n i f y i n g a change i n the p a r t i c i p a n t s ' p e r s p e c t i v e . C l e a r l y , f e e l i n g s , b e l i e f s , and a t t i t u d e s were a l s o i n t e g r a l in the p a r t i c i p a n t s ' search f o r meaning i n t h e i r cancer-mastectomy  experience.  A l l p a r t i c i p a n t s o u t l i n e d coping  s t r a t e g i e s t h a t helped them deal with these f e e l i n g s , b e l i e f s , and a t t i t u d e s . C r e a t i n g and u t i l i z i n g such s t r a t e g i e s was a  110  s e l f - d i r e c t e d process f o r each woman. Although s i g n i f i c a n t others were acknowledged as h e l p f u l , the women b e l i e v e d t h e i r instrumental  d e c i s i o n s about t h e i r l i v e s were made  independently.  Every p a r t i c i p a n t was able t o a r t i c u l a t e e x a c t l y what s t r a t e g i e s she had used t o deal with t h i s s t r e s s f u l p e r i o d i n her life.  Resuming everyday a c t i v i t i e s which she had p a r t i c i p a t e d i n  p r i o r t o mastectomy was one o f the most b a s i c s t r a t e g i e s . The m a j o r i t y o f p a r t i c i p a n t s a l s o s t r e s s e d the need f o r acceptance i n l i v i n g with both cancer and the mastectomy. P.  I t i s j u s t something you have t o accept and you have t o l i v e with i t , i f you don't w e l l , I think you'd be a t o t a l wreck.  P.  But the way I look a t i t . . . there a r e other t h i n g s that you can d i e o f and t h a t the b i g g e s t t h i n g i s not to be c o n s t a n t l y worrying about i t . . . You have t o s o r t o f p u t i t i n t h e back o f y o u r mind and g e t on with your l i f e and keep busy.  These two themes o f resuming everyday a c t i v i t i e s and acceptance were emphasized repeatedly throughout the i n t e r v i e w s . The f o l l o w i n g statements i l l u s t r a t e some o f the coping s t r a t e g i e s t h a t p a r t i c i p a n t s used f o l l o w i n g the d i s r u p t i o n o f cancer. P.  ...  g e t i n t o y o u r r e g u l a r r o u t i n e because you're not  that s i c k .  Do things and don't dwell on i t t h a t much.  Ill  P.  We are a very c l o s e f a m i l y and i f one person has i t [cancer] we a l l give t h a t person support . . . you have to take each day of your l i f e f o r what i t i s .  P.  Pride i n my daughters ... ...  I think t h a t my f a m i l y  my c h i l d r e n i n p a r t i c u l a r , helped me.  Just  l o o k i n g forward to things t h a t were happening i n t h e i r lives.  I d i d have good f r i e n d s .  s o c i a l l i f e , which helped  P.  I had q u i t e an a c t i v e  me.  And he [general p r a c t i t i o n e r ] s a i d you won't be ready to wear t h a t f o r three to s i x months. wearing i t [permanent p r o s t h e s i s ] ...  I s a i d I'm I only knew at  t h a t p o i n t i n time t h a t I was going to t h a t show. I was going, l o o k i n g as i f I was complete and I had to go for my mental a t t i t u d e as well as my p h y s i c a l attitude.  I had to turn up no matter how i l l I f e l t .  A l l the p a r t i c i p a n t s c l e a r l y d e s c r i b e d the meaning and value t h a t these s t r a t e g i e s held f o r them i n r e s t r u c t u r i n g t h e i r l i v e s . It was important f o r these women to r e c e i v e p o s i t i v e reinforcement from s i g n f i c a n t others f o r t h e i r e f f o r t s i n resuming d a i l y l i f e a c t i v i t i e s .  They expressed the need to be  t r e a t e d normally as they were p r i o r to d i a g n o s i s .  Several  p a r t i c i p a n t s mentioned t h a t they resented an o v e r l y s o l i c i t o u s approach from f r i e n d s and r e l a t i v e s .  112  P.  I d i d n ' t want sympathy.  I wanted t o lash out . . . I  got out the anger by being a c t i v e a l l t h e time. I worked through t h a t phase by having so much t o do.  P.  Yes, and then some remarks they make and you f e e l l i k e saying, "I'm not s i c k . "  You're not because once you  get used t o u s i n g your arm again you're f i n e b u t . . . w e l l , people j u s t don't r e a l i z e t h a t they're doing i t . C e r t a i n l y not i n t e n t i o n a l l y b u t i t ' s t h e r e .  P.  I've been v i s i t i n g people and [ t h e i r ] t e a r f u l r e l a t i v e s or f r i e n d s [have] come i n t o the room red-eyed . . . ready t o pounce on them and hug them and I f e e l l i k e saying g e t l o s t u n t i l you s t r a i g h t e n out your attitude.  But I had the same [ e x p e r i e n c e ] t h i n g . . .  you don't expect people t o be l a u g h i n g and jumping b u t those were t h e people I a p p r e c i a t e d because I d i d n ' t want t o s i t and c r y a l l the time.  L e t them c r y a t  home. They expressed q u i t e c l e a r l y t h a t i t was not h e l p f u l t o be always asked how they were f e e l i n g as i f people expected them t o be t e r m i n a l l y i l l .  In a d d i t i o n , these women seemed eager t o  share what had been u s e f u l f o r them, e s p e c i a l l y i f they c o u l d help somebody faced with the same s i t u a t i o n .  The above  d i s c u s s i o n has shown how women used t h e i r own resources t o  113 r e s t o r e normalcy i n t h e i r d a i l y l i v i n g .  In c o n t r a s t , the next  s e c t i o n i l l u s t r a t e s the women's process of reaching f o r resources o u t s i d e themselves Acquiring  i n the quest f o r wholeness.  Information  This d i s c u s s i o n addresses the p a r t i c i p a n t s ' a c q u i s i t i o n o f information i n response to the search f o r wholeness.  Acquiring  information about b r e a s t r e c o n s t r u c t i o n was a natural f i r s t step in the decision-making  process f o r each p a r t i c i p a n t . Accounts  i n c l u d e d d e s c r i p t i o n s of the manner i n which they r e c e i v e d and d e a l t with i n f o r m a t i o n r e l a t e d to b r e a s t r e c o n s t r u c t i o n . P a r t i c i p a n t s f e l l i n t o two equal groups based on the way i n which they r e c e i v e d i n f o r m a t i o n .  One group was r o u t i n e l y given  information p r i o r to or f o l l o w i n g mastectomy by such h e a l t h p r o f e s s i o n a l s as general p r a c t i t i o n e r s , general surgeons, and a nurse.  The second group a c t i v e l y s o l i c i t e d i n f o r m a t i o n from such  sources as magazine and newspaper a r t i c l e s , books, t e l e v i s i o n , health p r o f e s s i o n a l s , and v o l u n t e e r s i n the Reach f o r Recovery Organization.  A l l these sources o f i n f o r m a t i o n f o r the second  group of p a r t i c i p a n t s appeared to be o f equal i n f l u e n c e . f o l l o w i n g statements  The  i l l u s t r a t e examples o f i n f o r m a t i o n  a c q u i s i t i o n from sources other than h e a l t h p r o f e s s i o n a l s . P.  Well, I think I always knew t h a t there was a p o s s i b i l i t y to have b r e a s t r e c o n s t r u c t i o n because even four years ago there [were] a l l these a r t i c l e s .  114 P.  Then I read t h a t one with the tummy [ b r e a s t r e c o n s t r u c t i o n procedure] ...  i t was about how  they  take the p a r t o f the tummy. Then I was down a t my other g i r l f r i e n d ' s ... on t h e i r T.V.  i n the S t a t e s and they had i t  I watched the doctors t a l k i n g about i t  and t h a t ' s when I asked about i t . Obtaining enough c o r r e c t information appeared to be a d e s i r e of a l l the p a r t i c i p a n t s . F r u s t r a t i o n r e s u l t e d i f t h i s need was thwarted. P.  Well, I wasn't given any i n f o r m a t i o n .  I asked to be  r e f e r r e d to a s p e c i a l i s t and I was j u s t put o f f , I knew that you c o u l d have b r e a s t r e c o n s t r u c t i o n done.  I must  have read a r t i c l e s on i t . Most p a r t i c i p a n t s f e l t t h a t they had e v e n t u a l l y r e c e i v e d s u f f i c i e n t c r e d i b l e i n f o r m a t i o n about b r e a s t r e c o n s t r u c t i o n . Although the c r e d i b i l i t y o f t h i s i n f o r m a t i o n was a l s o an important i s s u e f o r the m a j o r i t y o f p a r t i c i p a n t s , the i s s u e o f c r e d i b i l i t y i s beyond the scope o f t h i s paper. P a r t i c i p a n t s r e a c t e d to i n f o r m a t i o n about b r e a s t r e c o n s t r u c t i o n i n two ways. They e i t h e r chose to do nothing with the information a t the time or used i t as a way of seeking a d d i t i o n a l knowledge about b r e a s t r e c o n s t r u c t i o n .  Those women  who dismissed i t as an o p t i o n a t the time, u s u a l l y d i d so because they were u n w i l l i n g to go through more surgery, or f e l t unable to c o n s i d e r b r e a s t r e c o n s t r u c t i o n u n t i l t h e i r adjuvant therapy  was  115  completed. P.  I d i d n ' t think o f r e c o n s t r u c t i o n a t t h a t time o r even later.  I think my doctor i n the c l i n i c mentioned i t as  being a f u t u r e p o s s i b i l i t y and I thought . . . yeah, right.  P.  I d i d n ' t r e a l l y want anybody e l s e chopping me up again ... after  so a c t u a l l y i t wasn't f o r a few y e a r s o r so ...  I don't think t h a t I d i d think too much o f  i t a t t h a t time.  I t wasn't u n t i l I read t h a t a r t i c l e  in the paper o r i n the magazine, I can't remember . . . and then there were a few more a r t i c l e s and then t h a t ' s when I s t a r t e d asking about i t when I went t o see my doctor [ p l a s t i c  surgeon].  The m a j o r i t y o f p a r t i c i p a n t s r e a c t e d more q u i c k l y and p o s i t i v e l y to the i n i t i a l i n f o r m a t i o n about b r e a s t reconstruction.  F o r them i t c a t a l y z e d immediate a c t i o n and the  beginning o f the decision-making  process.  T h i s strong l i n k  between the information and the p u r s u i t o f b r e a s t r e c o n s t r u c t i o n i s i l l u s t r a t e d i n the f o l l o w i n g accounts. P.  The minute I knew i t [ b r e a s t r e c o n s t r u c t i o n ] was p o s s i b l e the s c a l e went r i g h t up t o ten.  As soon as I  knew i t was p o s s i b l e t h a t was a l l I needed to know. I wanted i t . That's i t .  116 P.  I went to the l i b r a r y and I g o t books and I g o t i n touch with t h e cancer s o c i e t y . I got a l i s t o f people who had had b r e a s t r e c o n s t r u c t i o n and I phoned them and I t a l k e d t o a l o t o f people and g o t t h e i r o p i n i o n on i t . . . s i x o r seven . . . and how happy they were. And I guess i t was probably the o p i n i o n s from t a l k i n g t o these o t h e r people t h a t made me a l l gung ho . . . t h a t r e a l l y made me f e e l l i k e I wanna go through with i t . 'Cause they were so happy.  P.  But I never even thought t o ask him [the general p r a c t i t i o n e r ] about i t [ b r e a s t r e c o n s t r u c t i o n ] . . . i t was him [the general p r a c t i t i o n e r ] t h a t mentioned i t t o me . . . yeah, I thought i t was a good i d e a . A c t u a l l y r i g h t from the s t a r t .  Get y o u r s e l f geared i n t o  o p e r a t i o n s , I guess.  P.  I'd be r e a d i n g e v e r y t h i n g I c o u l d g e t my hands on i f I'd see a magazine o r a C h a t e l a i n e , anything . . . Everytime I saw i t around me . . . these women g e t t i n g implants and s t u f f and I'd read s t o r i e s about i t and I thought why not me then.  I deserved t h i s . . . and I  decided t o ask my own d o c t o r . For some women, the way i n which they p e r c e i v e d i n f o r m a t i o n proved to be as important as r e c e i v i n g the i n f o r m a t i o n .  There  117  appeared to be c e r t a i n p i e c e s o f information or cues t h a t captured the a t t e n t i o n of these p a r t i c i p a n t s and made them more s e n s i t i v e to the appeal o f b r e a s t r e c o n s t r u c t i o n .  In f a c t , these  women may have been r e c e p t i v e to the idea of b r e a s t r e c o n s t r u c t i o n p r i o r to being diagnosed with b r e a s t cancer.  The  a b i l i t y to p r o j e c t o n e s e l f i n t o a s i t u a t i o n t h a t has no p r a c t i c a l relevance, and y e t i d e n t i f y with the idea of r e c o n s t r u c t i o n r e v e a l s a marked s e n s i t i v i t y to such cues. The f o l l o w i n g excerpt r e f l e c t s a heightened awareness on the part of t h i s p a r t i c i p a n t to respond to c e r t a i n cues about the procedure o f b r e a s t r e c o n s t r u c t i o n . P.  I had no need, I was j u s t i n t e r e s t e d , I read i t because I was i n t e r e s t e d - I thought, "Gee, i s n ' t t h a t a neat thing.  What a good i d e a , " was a l l t h a t I thought about  at the time. This statement i m p l i e s t h a t t h i s p a r t i c i p a n t perhaps thought t h a t i f she ever d i d l o s e a b r e a s t t h a t she might c o n s i d e r the p o s s i b i l i t y of r e c e i v i n g an  implant.  Another p a r t i c i p a n t demonstrated a s i m i l a r readiness to respond to any i n f o r m a t i o n r e g a r d i n g b r e a s t r e c o n s t r u c t i o n , although she d i d so f o l l o w i n g her mastectomy. P.  I d i d n ' t go to a l i b r a r y and search or anything . . . But i t seemed to me t h a t every time I opened a book i t [ b r e a s t r e c o n s t r u c t i o n ] was there f a c i n g me.  This s e n s i t i v i t y to cues c r e a t e d a heightened awareness towards  118 breast r e c o n s t r u c t i o n information and helped to e x p l a i n why such information was a c a t a l y s t f o r these women. In marked c o n t r a s t , the other h a l f of the p a r t i c i p a n t s r e c e i v e d information on b r e a s t r e c o n s t r u c t i o n but d i d not have the i n c l i n a t i o n to pursue r e c o n s t r u c t i o n a t t h a t time.  These  p a r t i c i p a n t s demonstrated a more low-key response to the information about b r e a s t r e c o n s t r u c t i o n and i t d i d not a c t as a c a t a l y s t f o r decision-making.  Some o f the p a r t i c i p a n t s who  underwent b r e a s t r e c o n s t r u c t i o n took longer to a r r i v e a t a d e c i s i o n than p a r t i c i p a n t s who chose to r e f u s e r e c o n s t r u c t i o n . I t was not uncommon f o r several years to elapse before a p a r t i c i p a n t made the d e c i s i o n to undergo r e c o n s t r u c t i o n . The three p a r t i c i p a n t s who decided a g a i n s t b r e a s t r e c o n s t r u c t i o n d i d not respond to the idea of r e c o n s t r u c t i o n with the same t r i g g e r response t h a t c h a r a c t e r i z e d the responses o f so many of the b r e a s t r e c o n s t r u c t i o n p a r t i c i p a n t s . Rather than respond to the i n f o r m a t i o n with excitement,  these p a r t i c i p a n t s  tended to weigh the consequences more d e l i b e r a t e l y , and to focus on the negative aspects of r e c o n s t r u c t i o n . P.  I'd seen a lady t h a t had had i t done i n Vancouver, through a f r i e n d o f mine who was a nurse . . . But the doctor [ p l a s t i c surgeon] d i d send me to see  another  lady . . . and I wasn't too happy with what I'd seen, although the lady was happy with i t . But I . . . was disappointed.  119 In f a c t , two of these p a r t i c i p a n t s acknowledged t h a t i f they  had  not been given information and encouragement by t h e i r f a m i l y doctors they never would have sought out c o n s u l t a t i o n with a p l a s t i c surgeon. What appears to be a c r i t i c a l f a c t o r i n the  decision-making  process of many p a r t i c i p a n t s i s whether or not p a r t i c i p a n t s moved toward or away from b r e a s t r e c o n s t r u c t i o n a f t e r r e c e i v i n g information about i t . Perhaps the way i n which p a r t i c i p a n t s perceived and d e a l t with given information r e l a t e s to t h e i r s t y l e of decision-making.  This s u b j e c t w i l l be addressed i n the  f o l l o w i n g s e c t i o n on weighing consequences. Weighing Consequences of  Reconstruction  As each account unfolded, i t became s t r i k i n g l y apparent t h a t every p a r t i c i p a n t possessed an i d i o s y n c r a t i c approach to decision-making.  The unique decision-making  s t y l e i s best  c h a r a c t e r i z e d by the term true to themselves and i s a powerful theme t h a t l i n k e d the p a r t i c i p a n t  accounts.  Every d e c i s i o n appeared to be c h a r a c t e r i z e d by a unique pattern of events t h a t t r a n s p i r e d during the process.  decision-making  While p a r t i c i p a n t s c o u l d d e s c r i b e the process of making  a d e c i s i o n i n terms of sequential l i f e events, most  experienced  d i f f i c u l t y p i n p o i n t i n g the f a c t o r s which i n f l u e n c e d the  process,  although a few were able to a r t i c u l a t e these f a c t o r s c l e a r l y . Others merely acknowledged t h a t the d e c i s i o n had come about. woman, f o r example, s a i d t h a t the d e c i s i o n had been made  One  120  immediately a f t e r she spoke with a mastectomy v o l u n t e e r who had undergone b r e a s t r e c o n s t r u c t i o n .  The e l u s i v e nature o f these  f a c t o r s c o u l d be a r e s u l t o f the complex weave o f f e e l i n g s and thoughts t h a t i n f l u e n c e the s p e c i f i c a c t i o n o f decision-making. T h e r e f o r e , i t i s h i g h l y p o s s i b l e t h a t some o f the u n d e r l y i n g impulses t h a t motivated the decision-making were a t an unconscious l e v e l . Time, as a component o f decision-making s t y l e , pervaded every woman's account.  The p a r t i c i p a n t s ' decision-making time  r e f l e c t e d as much v a r i a t i o n among i n d i v i d u a l s as the events c h a r a c t e r i z i n g the process o f t h e i r decision-making. F o r example, s e v e r a l p a r t i c i p a n t s s a i d they made a snap d e c i s i o n while other p a r t i c i p a n t s c l a i m e d t h a t the time i n v o l v e d i n t h e i r d e c i s i o n took up t o a y e a r . P.  I always wanted i t . . . I t was mentioned t o me when they t o l d me I was going to have my b r e a s t o f f . . . t h a t t h e r e was a p o s s i b i l i t y o f having b r e a s t reconstruction.  R.  You c a n ' t remember ever making the d e c i s i o n or . . .  P.  Never.  P.  I t h i n k i t was more or l e s s on your mind a l o t and I think I j u s t woke up one morning.  I'd been t h i n k i n g  about i t f o r q u i t e a few n i g h t s and I j u s t woke up one morning and s a i d oh t o heck with i t , I'm not going t o  121 go through i t . . . J u s t f o r g e t about i t .  P.  W e l l , a c t u a l l y a f t e r he t a l k e d to me about i t , I r e a l l y thought t h a t I would go ahead and do i t and see i t took me a y e a r b e f o r e I got to d o c t o r [ p l a s t i c surgeon] to have i t done.  But I don't know why i t took so l o n g . I  guess i t i s j u s t to make up my mind to decide t o go ahead with i t . I n t e r e s t i n g l y enough, w h i l e a l l p a r t i c i p a n t s c o u l d g e n e r a l l y q u a n t i f y t h e i r l e n g t h o f decision-making time by r a t i n g themselves on a s c a l e between f a s t and slow decision-making, the m a j o r i t y were unable to p i n p o i n t the e x a c t amount o f time involved.  These p a r t i c i p a n t s were vague when i t came to  r e c a l l i n g s p e c i f i c days, weeks, and months i n r e l a t i o n to t h e i r decision-making time.  Some p a r t i c i p a n t s were even u n c l e a r about  the time i n t h e i r l i f e t h a t t h i s d e c i s i o n took p l a c e and were unable to s p e c i f y t h e y e a r i t took p l a c e . R.  When d i d you f i r s t see Doctor [ p l a s t i c surgeon] a f t e r the chemo?  Can you remember how many months i t was?  P.  I h o n e s t l y don't remember.  R.  Do you remember the y e a r ?  P.  I don't remember whether I was s t i l l on chemo or not. I doubt i t .  Because when you're on chemo you're not  thinking of anything else.  It's really l i k e that.  can remember when I saw the d o c t o r [the p l a s t i c  I  122 surgeon]. P.  I know I had the f i r s t one [ c o n s u l t a t i o n with the doctor] about November so i t must have been, I t h i n k , six months . . . about March.  I'm not p o s i t i v e on t h a t  . . . c o u l d have been. R.  That you f i r s t saw Doctor [ p l a s t i c surgeon], so t h a t would be . . . would t h a t be March o f  P.  Hmm,  '76?  i t must have been around there.  This phenomenon c o u l d p o s s i b l y be due to the natural  process  of f o r g e t t i n g some d e t a i l s over a p e r i o d o f time, which i s inherent i n r e t r o s p e c t i v e accounts.  On the other hand, perhaps  some p a r t i c i p a n t s put time i n a d i f f e r e n t context when making their decision.  I t appears as i f i t was more r e l e v a n t f o r these  p a r t i c i p a n t s to r e c a l l t h e i r decision-making  i n terms o f the l i f e  events t h a t centered around t h e i r d e c i s i o n . P.  Yes, because t h i s was a f t e r my . . . November i s the month o f my annual check-up and t h i s was when he [the doctor] suggested  i t [ b r e a s t r e c o n s t r u c t i o n ] and t h a t ' s  a l s o when the r e p o r t came back ...  my pap t e s t t h a t  i t was p o s i t i v e . . . and t h i s was working up to t h i s hysterectomy and I thought, "Well, l e t ' s wait and see how t h a t goes before I get i n t o something e l s e . "  Well  then I had to have i t [the hysterectomy] so t h a t helped to decide as to whether I would check i n t o i t f u r t h e r and go back and see whether I would have i t done or not.  123 The sequence o f events may well have been more s i g n i f i c a n t t o these p a r t i c i p a n t s than the length o f time each step o f t h e decision-making  process had taken.  P a r t i c i p a n t s who acknowledged t h a t t h e i r s had been an i n s t a n t d e c i s i o n t o undergo b r e a s t r e c o n s t r u c t i o n appeared t o possess l e s s awareness o f f a c t o r s t h a t i n f l u e n c e d t h e i r decision-making  than those women whose decision-making  longer time p e r i o d .  spanned a  These snap d e c i s i o n s may have taken place  outside the p a r t i c i p a n t s ' consciousness. d e c i s i o n s had a more emotional  Perhaps these i n s t a n t  b a s i s , t h a t proved d i f f i c u l t f o r  these women t o i d e n t i f y and d e s c r i b e .  In c o n t r a s t , those  p a r t i c i p a n t s who had taken longer t o a r r i v e a t a s p e c i f i c d e c i s i o n seemed more l i k e l y t o engage a c t i v e l y i n a d e l i b e r a t e weighing o f pros and cons, o f t e n c h a r a c t e r i z e d by a thinking-through  approach.  While time was an enduring p a r t o f each p a r t i c i p a n t ' s unique decision-making  s t y l e , i t appeared t o possess a f l u i d q u a l i t y .  This f l u i d i t y was observed with some o f the p a r t i c i p a n t s , whose perception regarding t h e t i m i n g o f events had a l t e r e d from the f i r s t i n t e r v i e w t o the second. In a d d i t i o n t o time, decision-making f a c t o r t h a t r e f l e c t e d decision-making  about the n i p p l e was a  s t y l e . The n i p p l e surgery  i s o p t i o n a l , t h e r e f o r e the d e c i s i o n t o have n i p p l e r e c o n s t r u c t i o n i s one t h a t faced every p a r t i c i p a n t who decided t o undergo b r e a s t reconstruction.  Eleven o f the p a r t i c i p a n t s chose t o have the  124 n i p p l e r e c o n s t r u c t i o n while two p a r t i c i p a n t s e l e c t e d to have the b r e a s t mound only.  The m a j o r i t y of p a r t i c i p a n t s s a i d t h a t they  knew e i t h e r before or a f t e r c o n s u l t a t i o n t h a t they d e s i r e d the nipple reconstruction.  Such statements as " I t i s the i c i n g on  the cake," and, "I j u s t assumed the n i p p l e was p a r t o f the whole package," were t y p i c a l . There was a marked tendency f o r those women who made snap d e c i s i o n s about having b r e a s t r e c o n s t r u c t i o n to decide i n s t a n t l y that they a l s o d e s i r e d n i p p l e r e c o n s t r u c t i o n .  Likewise,  p a r t i c i p a n t s who took time to d e l i b e r a t e before d e c i d i n g on breast r e c o n s t r u c t i o n were apt to take time to c o n s i d e r the merits of undertaking n i p p l e r e c o n s t r u c t i o n .  Thus, the  p a r t i c i p a n t s ' d e c i s i o n r e g a r d i n g the n i p p l e tended to r e f l e c t t h e i r decision-making  style.  the process o f decision-making P.  The f o l l o w i n g excerpts h i g h l i g h t about the n i p p l e .  When I j u s t had the p r o s t h e s i s i n and no n i p p l e on the end o f i t I d i d n ' t l i k e i t . I wanted i t f i n i s h e d .  P.  There was no t h i n k i n g about i t ... completely  I want i t done  . . . What i s the p o i n t of having h a l f of i t  done? I t was c r u c i a l l y important f o r these women to have a r e c o n s t r u c t e d b r e a s t t h a t resembled a normal b r e a s t i n order f o r them to f e e l whole.  The f o l l o w i n g p a r t i c i p a n t was a c t u a l l y more  e n t h u s i a s t i c about g e t t i n g the n i p p l e r e c o n s t r u c t i o n done a f t e r  125 the f i r s t i n t e r v i e w , which was s i x months p r i o r t o the second interview.  She had o b v i o u s l y weighed the consequences and  decided t h a t she only needed the convenience o f the b r e a s t mound and t h a t the a e s t h e t i c look o f her r e c o n s t r u c t e d b r e a s t was not as important t o her as she p r e v i o u s l y thought i t would be. P.  I would say t h a t i t was l e s s important.  I s o r t o f got  a l l f i r e d up and thought, "Oh t h i s would be the p e r f e c t s o l u t i o n , " but now I don't think i t would make t h a t much d i f f e r e n c e now.  The b i g t h i n g was having the  b a s i c r e c o n s t r u c t i o n done. Undergoing a d d i t i o n a l surgery, f o r the f o l l o w i n g p a r t i c i p a n t , was a higher p r i c e than she was w i l l i n g t o pay f o r the sake o f having the n i p p l e . P.  But i f I f e e l conspicuous  I can j u s t take a bandaid and  put i t over t h a t one . . . I've only done i t once . . . That's a l o t e a s i e r than having the surgery done . . . I think I'd have [ t h e ] one taken o f f before I'd have more surgery done . . . never r e a l l y considered t h a t . If they c o u l d have done i t a l l i n one o p e r a t i o n maybe  . . . but a n i p p l e i s a very small t h i n g t o be  concerned with, I f e e l . The f o l l o w i n g woman's decision-making  regarding her n i p p l e  was c h a r a c t e r i z e d by i n d e c i s i v e n e s s and she was one o f a very few who reacted i n t h i s manner. P.  He mentioned i t and I s a i d no. And then I s a i d y e s .  I  126 d i d n ' t know.  I went back to him l a s t year and I s a i d ,  "I think I'm going t o g e t you t o put the n i p p l e on i t . " That's j u s t s i l l y because t h i s s i d e w i l l pop out and then t h i s s i d e wouldn't.  That d i d n ' t bother me, i t  wouldn't have bothered anybody, r e a l l y , except I c o u l d see i t and nobody e l s e c o u l d . . .  he wanted t o do i t .  Another i s s u e t h a t arose f o r those p a r t i c i p a n t s c o n s i d e r i n g n i p p l e r e c o n s t r u c t i o n was a p r a c t i c a l c o n s i d e r a t i o n . P.  And I thought a t the time I might not bother with the n i p p l e except when you wear c l o t h e s such as a sun top or whatever i t was very obvious t h a t you had one and d i d n ' t have another.  And so I decided t o go a l l the  way and have the n i p p l e . The n i p p l e appeared t o be needed because o f the d e s i r e f o r symmetry which l i k e l y symbolized normalcy f o r these participants.  T h e r e f o r e , r e g a i n i n g the l o s t n i p p l e was a  c r i t i c a l i s s u e i n the search f o r wholeness. I t i s not c l e a r from the accounts whether or not each p a r t i c i p a n t used a p a t t e r n o f decision-making other personal decision-making.  that r e f l e c t e d a l l  The p o s s i b i l i t y e x i s t s t h a t the  p a r t i c i p a n t s used a s t y l e t h a t was unique f o r t h e i r d e c i s i o n regarding b r e a s t r e c o n s t r u c t i o n .  Another e x p l a n a t i o n could be  t h a t they used a past decision-making newer, modified s t y l e .  s t y l e combined with a  One needs t o look beyond a p a r t i c i p a n t ' s  breast r e c o n s t r u c t i o n d e c i s i o n s t y l e to her past d e c i s i o n s to  127 f u l l y comprehend her o v e r - a l l decision-making s t y l e . Perception of Surgery and  Surgeon  The search f o r wholeness encompassed the i s s u e o f surgery. The a t t i t u d e s to surgery o f p a r t i c i p a n t s who underwent b r e a s t r e c o n s t r u c t i o n d i f f e r e d c o n s i d e r a b l y from p a r t i c i p a n t s who to r e f u s e t h i s surgery.  chose  Every p a r t i c i p a n t who underwent b r e a s t  r e c o n s t r u c t i o n tended to p e r c e i v e the p o s i t i v e aspects o f surgery and minimize or deny the r i s k s . P.  I t would be d i f f e r e n t t h i s time because they weren't going i n t e r n a l r e a l l y .  They were doing e x t e r n a l t h i n g s  to me, c u t t i n g me and j u s t p u t t i n g an implant i n . They weren't l o o k i n g f o r cancer so i t would be a whole p s y c h o l o g i c a l [ l y ] d i f f e r e n t o p e r a t i o n as w e l l .  P.  Couldn't see any b a r r i e r , anything negative about the whole t h i n g . . . plunge headlong i f I get to f e e l i n g p o s i t i v e about something.  I j u s t get a l l e x c i t e d about  it.  P.  I t i s such a minor surgery.  They j u s t s l i t open and  they t r y and use the s l i t t h a t you a l r e a d y have and j u s t put an implant i n and sew i t back up.  P.  But when they convinced me i t was j u s t [a] simple procedure t e c h n i c a l l y speaking . . . i n s e r t i n g the  128 implant and sewing me up and t h a t would be i t .  That r e a l l y was  what helped me to be convinced to go ahead and have the s u r g e r y . Some women acknowledged the r i s k s o f surgery but t h e i r d e s i r e f o r r e c o n s t r u c t i o n outweighed t h e i r f e a r s . P.  Only t h a t I d i d n ' t want another o p e r a t i o n because I had gone through another very t r a u m a t i c o p e r a t i o n . . . Well, once I psyched myself up, oh well I ' l l go through with i t and have i t done and get i t over w i t h . just i t . know.  That's  To me no o p e r a t i o n i s a small o p e r a t i o n you  I don't l i k e them ...  I would never put myself  through t h a t [ b r e a s t r e c o n s t r u c t i o n adjustment] j u s t f o r another, almost cosmetic t h i n g and to me t h a t i s not important.  I t i s j u s t not worth the . . . whole  thing.  P.  I f I thought t h e r e was any reason f o r t a k i n g a chance I would not have had i t done.  But I was l o o k i n g f o r a  doctor to t e l l me, "No, i t ' s not [a r i s k ] . "  P.  The o n l y t h i n g t h a t s c a r e d me ever was i f I d i d s t i r up any cancer t h a t was t h e r e but then you c a n ' t t h i n k l i k e t h a t because i f I thought i t was t h e r e i t might come. ...  I thought maybe i f they c u t but then I f i g u r e d I  got r i d o f i t with the chemotherapy. The f o l l o w i n g accounts i l l u s t r a t e the powerful impact o f the  129 p a r t i c i p a n t s ' p e r c e p t i o n o f surgery on the process.  decision-making  For example, t h i s optimism p e r s i s t e d d e s p i t e a l a c k o f  good r e s u l t s f o l l o w i n g the f i r s t surgery. P.  There was a very good chance t h a t i t [ b r e a s t r e c o n s t r u c t i o n ] would work t h i s time.  I t was worth i t  to do i t once and wasn't too bad to recover from . . . only i n f e c t e d . . . f a i r l y simple, yeah sure, go ahead with i t .  R.  How d i d you deal with the setbacks when you had the setbacks?  P.  I don't t h i n k I had any  setbacks.  R.  So . . . they [two implants] went hard and l i k e . . .  P.  Oh, well t h a t .  R.  And t h a t time you hemorrhaged?  P.  Well, those t h i n g s happen.  These women appeared to take the s u r g i c a l c o m p l i c a t i o n s i n s t r i d e r  and were not threatened. Some of the p a r t i c i p a n t s who underwent r e c o n s t r u c t i o n were prepared to go through any number o f s u r g e r i e s to a t t a i n t h e i r personal g o a l s . surgeries.  One p a r t i c i p a n t had f i v e b r e a s t r e c o n s t r u c t i o n  Another p a r t i c i p a n t had more than ten separate  operations to r e c o n s t r u c t her b r e a s t s over an e i g h t - y e a r p e r i o d . P.  No, i t was l i k e I ' l l j u s t keep, I w i l l do t h i s  130 [ s u r g e r y ] u n t i l I'm happy with the r e s u l t or u n t i l he [the p l a s t i c surgeon] t e l l s me t h a t ' s as good as i t i s going to get and then I'm going to have to l e a r n to be happy with t h a t r e s u l t .  P.  He [the p l a s t i c surgeon] s a i d t h a t doesn't look r i g h t and I s a i d , "No ...  i t looks a b i t higher than the  other [ b r e a s t ] " . . . "Maybe I had b e t t e r lower i t , eh?" and I s a i d , "Well, sure . . . j u s t l i k e buying i c e cream." In marked c o n t r a s t , those p a r t i c i p a n t s who decided a g a i n s t having b r e a s t r e c o n s t r u c t i o n viewed surgery as t r a u m a t i c .  For  them the r i s k s f a r outweighed any p e r c e i v e d b e n e f i t s . I t was d i f f i c u l t f o r these women to contemplate undergoing surgery without a guarantee of s a t i s f a c t o r y r e s u l t s . P.  In the meantime I'm not going to be a guinea p i g , i t ' s not worth i t . You see they've got to c u t my  back,  take a p i e c e from my back, b r i n g i t around to the f r o n t . . . you go back about twice or three times.  P.  And another reason . . . your body changes as you get older.  Mine's a l r e a d y changed.  I've had d i f f e r e n t  s i z e d prostheses s i n c e I s t a r t e d , about f o u r o f them . . . what are you going to do, keep t u r n i n g back and having more surgery done? ...  In my case my good  131 breast would have to be made s m a l l e r to match and t h a t d i d n ' t appeal to me . . . having my good b r e a s t touched in any way . . . Yeah, one good one i s b e t t e r than nothing I guess.  P.  The hysterectomy  came along and so there you go from  one to another.  You f i g u r e t h i s i s enough ...  I t was  more surgery . . . I t ' s not even an a r t i f i c i a l  limb  . . . other people i f you don't t e l l them they  don't  even know. These p a r t i c i p a n t s never acknowledged any p o s i t i v e aspects o f r e c o n s t r u c t i v e surgery. Perception o f surgery appeared to be a f f e c t e d by t h e i r perception o f the surgeon on the p a r t o f those p a r t i c i p a n t s who underwent r e c o n s t r u c t i o n .  The more p o s i t i v e a p a r t i c i p a n t f e l t  about her surgeon, the g r e a t e r confidence she expressed i n the b e n e f i t s o f b r e a s t r e c o n s t r u c t i v e surgery.  In these women's eyes  the b r e a s t r e c o n s t r u c t i v e surgeon was f r e q u e n t l y endowed with magical powers and, as such, was worthy o f absolute r e s p e c t and admiration.  These women p l a c e d g r e a t f a i t h i n t h e i r surgeons.  This t r u s t i n the surgeons' a b i l i t y appeared to c r e a t e a bond between doctor and p a r t i c i p a n t t h a t c o n t r i b u t e d to a teamwork relationship.  Although the s t r e n g t h o f the bond v a r i e d among  b r e a s t r e c o n s t r u c t i o n p a r t i c i p a n t s , they a l l expressed s a t i s f a c t i o n with the r e l a t i o n s h i p between themselves and t h e i r  132 surgeon. P.  I d i d n ' t even know where he was going to get the s k i n from.  I t d i d n ' t bother me a b i t . . . I was j u s t i n  h i s hands. J u s t as i f he was P.  God.  And when I went to him [the d o c t o r ] l i k e I s a i d , the guy c o u l d ask me to jump o f f the Lions Gate Bridge and I would.  He was j u s t , h i s whole a t t i t u d e , and the way  he d e a l t with me as a human being and someone who had a d i s f i g u r i n g o p e r a t i o n done.  The way he e x p l a i n e d i t  and e v e r y t h i n g and d i d n ' t t e l l me t h a t i t was a l l going to be wonderful a f t e r w a r d s , but i t wasn't going to be anywhere near what I looked l i k e then.  P.  I b e l i e v e he's [the d o c t o r ] magic. ...  P.  I r e a l l y do and  I t h i n k t h a t he can j u s t do e v e r y t h i n g p e r f e c t l y .  He [the d o c t o r ] has got the most e x c e l l e n t p e r s o n a l i t y , I f i g u r e d , as soon as my husband and I t a l k e d to him. F i r s t i n t e r v i e w ; I knew I had i t made with him. t r u s t e d him completely ...  I  I f he c o u l d do another  o p e r a t i o n on me I wouldn't worry about i t . The amount o f t r u s t shown by the p a r t i c i p a n t s appeared to be d i r e c t l y r e l a t e d to the number o f s u r g e r i e s they had undergone. Those women who underwent m u l t i p l e , r e p e t i t i v e b r e a s t  133 r e c o n s t r u c t i v e o p e r a t i o n s were more l i k e l y t o demonstrate absolute t r u s t by p u t t i n g t h e i r surgeon on the same l e v e l as a demigod.  Perhaps t h i s high degree o f t r u s t a s s i s t e d them i n  p e r s e v e r i n g through numerous s u r g e r i e s over an extended course o f time. Conversely, those women who r e f u s e d b r e a s t r e c o n s t r u c t i o n surgery tended t o p e r c e i v e t h e surgeon on a more n e u t r a l b a s i s . There was no need f o r them t o e s t a b l i s h a r e l a t i o n s h i p with t h e i r surgeon, as the b r e a s t r e c o n s t r u c t i o n p a r t i c i p a n t s had. It i s apparent t h a t the p a r t i c i p a n t s ' p e r c e p t i o n o f surgery was c o n s i s t e n t with t h e c h o i c e they made. Those women f o r whom the a n t i c i p a t e d r e s u l t s outweighed the r i s k s , underwent reconstruction.  Those p a r t i c i p a n t s who c o u l d not j u s t i f y t h e  s u r g i c a l r i s k s d e c l i n e d the surgery.  Regardless o f the  c o n c l u s i o n , a l l p a r t i c i p a n t s went through a decision-making process.  Weighing the consequences i n terms o f need f o r surgery  and p e r c e p t i o n o f t h e surgeon was an important step i n the process. Indeed, the powerful dynamics o f the p a t i e n t - d o c t o r r e l a t i o n s h i p cannot be underestimated when a p a r t i c i p a n t ' s decision-making process i s assessed.  Throughout the weighing o f  consequences, v a r i a t i o n s i n personal decision-making s t y l e were evident.  I t i s c r i t i c a l t h a t these f a c t o r s be assessed i n the  c o n t e x t o f the meaning t h a t each p a r t i c i p a n t a t t a c h e s t o her decision.  134 The p a r t i c i p a n t s d e a l t with such complex i s s u e s as e s t a b l i s h i n g meaning o f the cancer experience, a c q u i r i n g information about b r e a s t r e c o n s t r u c t i o n , weighing the consequences, and p l a c i n g the surgery i n t o context f o r themselves during t h e i r search f o r wholeness.  With these i s s u e s behind  them, they were able to make a d e c i s i o n about choosing or refusing breast reconstruction.  Regaining wholeness was  f i n a l step of the women's decision-making  the  process and focused on  defending the d e c i s i o n and recovery from the cancer-mastectomy experience. Regaining Wholeness Defending the D e c i s i o n Although the d e c i s i o n to undergo b r e a s t r e c o n s t r u c t i o n was made by the i n d i v i d u a l p a r t i c i p a n t , i t was a l s o obvious t h a t the b e l i e f s and values o f f r i e n d s and r e l a t i v e s had impact on the i n d i v i d u a l woman i n her decision-making.  For the m a j o r i t y o f  women who underwent b r e a s t r e c o n s t r u c t i o n , the i n f l u e n c e o f s i g n i f i c a n t others occurred p r i m a r i l y a f t e r t h e i r d e c i s i o n was made. The r e s u l t i n g need to defend t h e i r d e c i s i o n was a r e c u r r e n t theme throughout the accounts.  This s e c t i o n  addresses  t h i s defense and i t s e f f e c t on the p a r t i c i p a n t s . Nuclear f a m i l y members were p e r c e i v e d as more s u p p o r t i v e than extended f a m i l y members.  Husbands and b o y f r i e n d s , i n  p a r t i c u l a r , o f f e r e d the g r e a t e s t support f o r the womens' decisions.  Almost without e x c e p t i o n , they emphasized to the  135 p a r t i c i p a n t s t h a t i t was t h e i r own d e c i s i o n .  The partners  s t r o n g l y t h a t the women should not undergo b r e a s t  felt  reconstruction  f o r them and o f f e r e d t h e i r support r e g a r d l e s s of the d e c i s i o n they made. A l l the c h i l d r e n of the p a r t i c i p a n t s , with the exception of two from d i f f e r e n t f a m i l i e s , were e n t h u s i a s t i c about t h e i r mothers undergoing r e c o n s t r u c t i o n . P.  And they [ f a m i l y ] thought t h a t [ b r e a s t  reconstruction]  was a good idea because I thought i t was.  P.  Whatever I wanted.  Now of course we [husband and I]  discussed the pros and cons and e v e r y t h i n g e l s e l i k e that but i t was whichever way I wanted i t because I was the one t h a t had to undergo the  P.  surgery.  But he [husband] r e a l l y was very cool about i t [ b r e a s t r e c o n s t r u c t i o n ] . . . e i t h e r way was f i n e .  F r i e n d s and acquaintances were much more l i k e l y than c l o s e f a m i l y members to ask the p a r t i c i p a n t to e x p l a i n her r a t i o n a l e f o r having b r e a s t r e c o n s t r u c t i o n .  The u n s o l i c i t e d comments of  f r i e n d s and acquaintances were f r e q u e n t l y viewed as i n t r u s i v e and unsupportive. P.  Oh, I've got l o t s of s t a t i c from a v a r i e t y of people. . . . Why a t y o u r age do you want to be bothered having something l i k e that? ...  I don't r e a l l y f i g u r e  t h a t o l d y e t . . . Made me q u i t e  mad.  I'm  136 P.  ...  i n f a c t my f a t h e r - i n - l a w ...  he s a i d t h i n g s  l i k e . . . and you get s i c k leave f o r t h i s ? . . . because i t was s o r t o f a f r i v o l o u s s o r t o f t h i n g and o f course a l o t o f o l d e r people f e e l t h a t way . . . and they ask you i f i t ' s safe and you e x p l a i n to them t h a t you're going to a medical doctor t h a t ' s doing i t . . . most people have no idea . . . f r u s t r a t i o n s o f wearing a p r o s t h e s i s and how i t can take y e a r s o f f y o u r l i f e .  P.  Oh, one daughter.  She j u s t c o u l d n ' t stand i t .  She  thought t h a t I was p l a y i n g with f i r e [having b r e a s t r e c o n s t r u c t i o n ] . . . she thought leave well enough alone - t h a t i t was okay the way I was and I s a i d , "You think I'm okay but I don't."  P.  One of my f r i e n d s s a i d to me, "You d i d n ' t need t h i s o p e r a t i o n , " and I s a t them down and I s a i d , "Well, I think I need i t , " and a f t e r I'd e x p l a i n e d i t to them about the whole b i t - being uncomfortable,  being too  heavy on one s i d e they s a i d , "Well, I'm g l a d you e x p l a i n e d i t to me"  . . . i f you say you're going i n  f o r b r e a s t r e c o n s t r u c t i o n , they say i t ' s l i k e going i n f o r a f a c e - l i f t . . . they t h i n k you're being vain by even c o n s i d e r i n g i t . The v a l i d i t y o f comments about b r e a s t r e c o n s t r u c t i o n was  137 judged by the p a r t i c i p a n t s on the b a s i s of the experience of the person who made the comment.  Women with experience made fewer  comments and were p e r c e i v e d with more c r e d i b i l i t y .  Conversely,  non-supportive comments came more f r e q u e n t l y from women with no personal experience with l o s s o f a b r e a s t . Not s u r p r i s i n g l y , t h e i r comments were seen as l e s s v a l i d . P.  From people t h a t never had the mastectomy who say, "Oh, I wouldn't do t h a t to my body [have b r e a s t r e c o n s t r u c t i o n ] , " I j u s t t h i n k , "Oh w e l l , don't t a l k to me about i t .  You don't know what you're t a l k i n g  about."  P.  I'm sure t h a t i f I had had a hand removed and had been given the c h o i c e o f having a hand as a p r o s t h e s i s attached to my remaining limb I don't t h i n k anyone would have n e a r l y given me the f l a c k f o r i t t h a t I got for having a b r e a s t ...  I would t r y to t e l l people  why and they d i d n ' t want to know. That made i t worse. I was somehow p e r v e r s e , I mean s i c k . wrong with you. sex too ... that.  P.  Something i s  You are so hung up on your b r e a s t s and  I mean how can you deal with people l i k e  I stopped t r y i n g .  Wouldn't r e a l l y matter to me what they thought anyway ...  I t i s what I wanted.  I t ' s my l i f e .  I  138 wasn't harming anybody by doing i t .  P.  I t was something I was doing because I wanted t o do i t and I f e l t r i g h t about doing i t a g a i n s t a l l the advice and comments o f so many o f my f r i e n d s and I j u s t decided  I was r i g h t and I was going to do i t and they  could a l l p i s s o f f . . .  i t was f o r my own b e n e f i t and  I knew t h a t I was doing i t f o r me and I knew p e r f e c t l y well why I was doing i t . . . I j u s t i f i e d i t several ways and then decided t h a t i t r e a l l y d i d n ' t matter a damn what the reason was as long as I f e l t b e t t e r about my sel f . P a r t i c i p a n t s expressed anger and disappointment when they t a l k e d about the non-supportiveness o f f r i e n d s .  They coped with  t h i s challenge from others by c o n t i n u a l l y j u s t i f y i n g t h e i r d e c i s i o n to themselves, d i s m i s s i n g t h e i r f r i e n d s ' i n f l u e n c e and taking r e s p o n s i b i l i t y f o r t h e i r own d e c i s i o n .  Participants  l i m i t e d the r i s k o f encountering c r i t i c i s m by c o n t r o l l i n g d i s c u s s i o n o f the t o p i c o f b r e a s t r e c o n s t r u c t i o n and by t a l k i n g to i n d i v i d u a l s who were perceived as open-minded o r who brought up the s u b j e c t .  A few p a r t i c i p a n t s were supported i n t h e i r  d e c i s i o n to pursue b r e a s t r e c o n s t r u c t i o n by a l l o f t h e i r f r i e n d s and colleagues i n a d d i t i o n t o t h e i r f a m i l i e s . Both groups o f p a r t i c i p a n t s were able to a r t i c u l a t e a rationale f o r their decision.  139 P.  I think i t ' s b a s i c a l l y . . . happiness and I don't l i k e to be s i c k o r d i f f e r e n t . . . Because I thought i t was good t h a t they c o u l d do something.  P.  I have an a p p r e c i a t i o n f o r the human body and f o r i t s l i n e s which b e a u t i f y - f o r the way i t ought t o be.  P.  Yeah, t h a t ' s the b i g t h i n g , you're not c o n f r o n t e d v i s i b l y every day with the f a c t t h a t you've had cancer, which nobody can run away from but nobody wants t o be c o n s t a n t l y reminded o f i t .  P.  We a l l have t o have a c e r t a i n amount o f s e l f - e s t e e m to function.  And you're no good t o anybody e l s e i f you  don't have i t . . . And so i f i t ' s something l i k e t h i s that means t h a t you're going to have b e t t e r self-esteem, then i t [ b r e a s t r e c o n s t r u c t i o n ] i s something t h a t you need because we're not j u s t p h y s i c a l beings, we're emotional beings and p h y s i c a l , as well as s p i r i t u a l , so you're i n v o l v i n g a l l p a r t s o f y o u r l i f e .  P.  I t h i n k you should do what you f e e l l i k e - l i k e you want done and I mean even i f I - i f they t o l d me I was to g e t cancer, l i k e t h i s i s before I had the r e c o n s t r u c t i o n even i f t h i s was cancer i n my back I  140 would s t i l l have gone on and had the b r e a s t reconstruction.  Because I f e e l l i k e l i f e i s too s h o r t  and i f you r e a l l y f e e l l i k e you want something why not go f o r i t ?  P.  L i k e my daughter says - maybe i t ' s v a n i t y and I s a i d i t is n o t . I says i f I had my f i n g e r c u t o f f I'd want t h a t back . . .  I j u s t wanted t o have e v e r y t h i n g t h a t  everybody e l s e had.  P.  So with something l i k e r e c o n s t r u c t i o n or with cancer, to have t o l i v e with what I c o n s i d e r m u t i l a t i o n , why should you have t o do that? lousy time?  Why should you have such a  I f f o r a b r i e f p e r i o d o f d i s c o m f o r t you  can f o r g e t about i t .  P.  I don't know where I'd be now . . . t o l i v e with i t [mastectomy]. I am now.  But I don't think I would be as happy as  I would s t i l l be s e a r c h i n g f o r t h i s o r  wanting i t done. Most p a r t i c i p a n t s s t a t e d s e v e r a l reasons f o r undergoing t h i s surgery. The three p a r t i c i p a n t s who decided a g a i n s t having b r e a s t r e c o n s t r u c t i o n d e s c r i b e d t h e i r r a t i o n a l e as f o l l o w s . P.  Well, there's j u s t too many t h i n g s f o r me a g a i n s t i t .  141  . . . Too many i f s . . . I thought no, a t t h i s stage o f the game i t ' s not f o r me.  P.  I t ' s not r i g h t .  I'm not r e a l l y s o r r y t h a t I made t h a t d e c i s i o n .  I'm  not comfortable t h i s way but who's t o say I'd be comfortable the other way [with b r e a s t reconstruction]?  I had heard from another c o u s i n o f my  husband who knew a lady t h a t had both b r e a s t s done and she had t e r r i b l e p a i n .  I heard t h a t a f t e r , but t h a t  s o r t o f helped me along i n t h i n k i n g t h a t I made the right decision ...  a few o f them [ f r i e n d s ] s a i d t o me  when I was going t o have i t done, "I'm g l a d you changed your mind and d i d n ' t . "  P.  And my own doctor s a i d t h a t she's g l a d I d i d n ' t go through with i t because they a r e not very s u c c e s s f u l .  I t was apparent from t h e i r accounts t h a t women who d e c l i n e d breast r e c o n s t r u c t i o n surgery were not c h a l l e n g e d or r e q u i r e d t o defend t h e i r d e c i s i o n t o the same extent as those who chose surgery.  A l l p a r t i c i p a n t s who d e c l i n e d b r e a s t r e c o n s t r u c t i o n  r e c e i v e d support from f a m i l y , f r i e n d s , and d o c t o r s .  The primary  reason endorsed by these s i g n i f i c a n t others was the b e l i e f t h a t these women had been through enough trauma.  Participants  acknowledged t h a t the support o f t h e i r s i g n i f i c a n t others was h e l p f u l , although they stood f i r m i n t h e i r c o n v i c t i o n s t h a t they  142  alone were r e s p o n s i b l e f o r the d e c i s i o n . The major d i f f e r e n c e between t h e two groups o f p a r t i c i p a n t s was the amount o f j u s t i f y i n g they f e l t compelled t o do. The increased amount o f j u s t i f i c a t i o n r e q u i r e d o f women who chose breast r e c o n s t r u c t i o n appears c o n s i s t e n t with t h e e l e c t i v e nature of the procedure. In a d d i t i o n , i t i s l i k e l y impossible f o r women who have two i n t a c t breasts t o r e a l l y know what t h e experience o f l o s i n g a breast i s l i k e f o r post-mastectomy women. Not s u r p r i s i n g l y , a l l the p a r t i c i p a n t s who d e c l i n e d b r e a s t r e c o n s t r u c t i o n s t a t e d t h a t they could understand why b r e a s t r e c o n s t r u c t i o n would be an important p a r t o f the r e h a b i l i t a t i v e process f o r other post-mastectomy women. The very f a c t t h a t they sought o u t c o n s u l t a t i o n with a p l a s t i c surgeon provides support f o r t h e b e l i e f t h a t they were open-minded enough t o i d e n t i f y with some o f the concerns o f the b r e a s t r e c o n s t r u c t i o n p a r t i c i p a n t s . Recovering The f o l l o w i n g s e c t i o n addresses only t h e p a r t i c i p a n t s who underwent b r e a s t r e c o n s t r u c t i o n .  F o r these t h i r t e e n women, the  process o f r e g a i n i n g wholeness was symbolized by the p h y s i c a l r e s t o r a t i o n o f t h e i r missing b r e a s t and the r e s u l t i n g a b i l i t y t o l e t go o f the cancer experience and g e t on with l e a d i n g normal lives.  A l l p a r t i c i p a n t s r e c i t e d numerous b e n e f i t s o f t h e  r e s t o r a t i v e surgery.  The most predominant b e n e f i t c i t e d can be  d e s c r i b e d as r e g a i n i n g a sense o f wholeness.  Restoration o f  143  wholeness was a powerful theme r e c u r r e n t i n the d e s c r i p t i o n o f these women's decision-making process.  Becoming whole again was  a s s o c i a t e d with f e e l i n g s o f happiness and w e l l - b e i n g . An important p a r t o f r e g a i n i n g a sense o f wholeness was l o o k i n g and f e e l i n g normal.  Dressing without r e s t r i c t i o n s a l s o  gave the p a r t i c i p a n t s a f e e l i n g o f being normal.  This f e e l i n g of  normalcy appeared t o be an i n t e g r a l p a r t o f being able t o a c q u i r e a sense o f wholeness.  Because f e e l i n g s o f wholeness and normalcy  appeared to be i n s e p a r a b l e f o r t h e p a r t i c i p a n t s , i t i s d i f f i c u l t to a s c e r t a i n which one developed f i r s t a f t e r r e c o n s t r u c t i o n . P.  I think when you look normal t h a t a l s o helps you to feel more normal.  P.  I'm pleased.  I t h i n k i f you ask [the p l a s t i c surgeon]  before he even took the bandages o f f - I t o l d him i t was b e a u t i f u l because I had a mound there . . .  Oh I  enjoyed i t . " I t ' s b e t t e r i n a l l ways," I s a i d .  We  enjoy the sun and the t h i n g s I can wear, whatever, I'm j u s t the same as everybody e l s e . Another a s s e t o f b r e a s t r e c o n s t r u c t i o n which t i e d i n with f e e l i n g normal was the disappearance o f the s e l f - c o n s c i o u s n e s s p r e v i o u s l y a s s o c i a t e d with the mastectomy and p r o s t h e s i s . P.  And I can even go and change i n a changing room with other women now . . . whereas before I c o u l d n ' t take my c l o t h e s o f f i n f r o n t o f other people . . . Because you  144  look so d i f f e r e n t and even i f you are w e l l - a d j u s t e d I don't think you can do i t because you look weird.  You  don't want people s t a r i n g . Nobody wants to be seen as a freak. F e e l i n g normal again was c r i t i c a l i n a s s i s t i n g many o f these participants in regaining t h e i r self-esteem. Happiness and s u r p r i s e t h a t the r e c o n s t r u c t e d b r e a s t c o u l d make such a d i f f e r e n c e i n t h e i r l i v e s i s well i l l u s t r a t e d i n the following P.  statements. As soon as I woke up [ f o l l o w i n g surgery] I was j u s t so happy.  I t j u s t f e l t wonderful.  J u s t l i k e being reborn  again.  P.  I'm much happier s i n c e i t ' s been done.  I t ' s made a  great deal of d i f f e r e n c e . I d i d n ' t think i t would make that amount o f d i f f e r e n c e but i t has . . . Well, I j u s t thought I wanted to f e e l more complete . . . more as a whole person.  P.  But I am t o t a l l y happy.  I t h i n k i t ' s a very p o s i t i v e p i e c e o f surgery t h a t you don't r e a l i z e how p o s i t i v e i t i s u n t i l a f t e r you've had it.  P.  I never thought having one [ b r e a s t ] made any d i f f e r e n c e . . . . I think i t ' s being made whole a g a i n .  145  It i s l i k e you don't r e a l l y mind l o s i n g the b r e a s t but i n s t e a d o f being 100 percent you're 98 percent. The i n t e n s i t y of these women's f e e l i n g s shown i n d e s c r i b i n g t h e i r pleasure with the r e s u l t s o f b r e a s t r e c o n s t r u c t i o n was  striking.  Convenience a l s o was mentioned r e p e a t e d l y as a primary reason f o r choosing b r e a s t r e c o n s t r u c t i o n . P a r t i c i p a n t s remarked on the sense of freedom and r e l i e f a t g i v i n g up t h e i r burdensome prosthesis. P.  To be a b l e to get up i n the morning and to be a b l e to put on a bra and not p i n rubber boobs on.  P.  Well I had s a i d before t h a t you know I wasn't unhappy b e f o r e , i t j u s t f e l t so much n i c e r a f t e r w a r d s , t h a t I never thought r e a l l y t h a t i t would make t h a t much difference.  Except f o r being more comfortable.  Not  having to wear a bra a l l the time with the p r o s t h e s i s in i t .  P.  Yeah, no i t wasn't r e a l l y going to change my l i f e . mean to change my l i f e immeasurably  ...  I  I t was going  to be something t h a t was good to do and put i t back the way i t was k i n d o f t h i n g and a l s o be a l o t more convenient. This convenience s u i t e d these p a r t i c i p a n t s ' a c t i v e l i f e s t y l e s and a l s o r e i n f o r c e d t h e i r f e e l i n g s of normalcy.  146 A f u r t h e r important theme was l o s s o f the constant p h y s i c a l reminder o f the cancer experience.  This constant reminder was  a s s o c i a t e d with worry and f o c u s i n g on the negative aspects o f cancer as a d i s e a s e . one.  The women c i t e d t h i s f a c t o r as a c r i t i c a l  I t provided both a r a t i o n a l e f o r having r e c o n s t r u c t i o n and  was a b e n e f i c i a l e f f e c t o f the surgery. P.  When you have t h e r e c o n s t r u c t i o n you've always g o t something t h e r e . having  P.  And you're not c o n s t a n t l y reminded o f  cancer.  You don't even think about i t [cancer and mastectomy] unless somebody b r i n g s up the s u b j e c t .  I j u s t feel  l i k e I was before . . . I t i s j u s t t h a t you f e e l more normal. From the f o l l o w i n g accounts i t appears as i f s e v e r a l o f the p a r t i c i p a n t s had succeeded i n p u t t i n g behind them the whole trauma o f t h e i r cancer P.  experience.  I'm j u s t very g r a t e f u l t h a t I'm well and t h a t I can f e e l t h i s well because as I s a i d three y e a r s ago I d i d n ' t t h i n k I'd be able t o look t h i s f a r ahead and be enjoying l i f e t h e way I am today.  So I am very, very  grateful for that. The m a j o r i t y o f p a r t i c i p a n t s f e l t t h a t b r e a s t r e c o n s t r u c t i o n made i t p o s s i b l e t o get on with t h e i r l i v e s . One o f the o v e r r i d i n g f e e l i n g s t h a t emerged from the  147  p a r t i c i p a n t s ' accounts was exuberance.  T h i s excitement about the  b e n e f i t s o f b r e a s t r e c o n s t r u c t i o n was r e f l e c t e d i n t h e i r eagerness t o t a l k about t h e i r experiences, i n the words they used and i n t h e i r non-verbal e x p r e s s i o n s .  They were t h r i l l e d a t the  p h y s i c a l and mental t r a n s f o r m a t i o n brought about by b r e a s t reconstruction. The powerfulness o f the b r e a s t r e c o n s t r u c t i o n experience i s best documented through t h e f o l l o w i n g statements: P.  I had two doctors [ a t the cancer c l i n i c ] look a t the implant and I s a i d I feel l i k e a m i l l i o n d o l l a r s and I s a i d i t should be done f o r every woman t h a t wants i t done.  P.  I s a i d t o [the p l a s t i c surgeon], "One t h i n g I'm d i s a p p o i n t e d about . . .  i t ' s not l i k e a new dress t h a t  I can go home and show o f f .  I can't show i t  [ r e c o n s t r u c t e d b r e a s t ] o f f . " I was so d e l i g h t e d . . . I was a b s o l u t e l y t h r i l l e d . Every p a r t i c i p a n t who underwent b r e a s t r e c o n s t r u c t i o n s t a t e d that she would recommend t h e surgery t o any woman who d e s i r e d i t . P.  I s t i l l don't understand how women don't.  Why not  every s i n g l e b r e a s t cancer p a t i e n t i s i n there g e t t i n g reconstructed. The p a r t i c i p a n t s ' strong b e l i e f i n the b e n e f i t s o f t h i s c o n s t r u c t i v e surgery never f a l t e r e d during the e n t i r e  148  decision-making  and outcome phase. Summary  This chapter addressed the p a r t i c i p a n t s ' process regarding b r e a s t r e c o n s t r u c t i o n .  decision-making  The major themes t h a t  pervaded the p a r t i c i p a n t s ' accounts and i n f l u e n c e d the decision-making  process were the i n i t i a l l o s s of wholeness and  the search f o r and r e s t o r a t i o n o f wholeness. The p a r t i c i p a n t s needed to s t a r t a t the beginning of t h e i r cancer experience and r e c i t e s t o r i e s d e s c r i b i n g d i a g n o s i s , mastectomy, and adjuvant therapy.  T h i s enabled them to anchor  the cancer experience and a s s i s t the researcher i n  understanding  t h e i r reasons f o r c o n s i d e r i n g b r e a s t r e c o n s t r u c t i o n . p a r t i c i p a n t s put the cancer-mastectomy experience  A l l the  i n the  context  of other l i f e events i n order to e s t a b l i s h the personal meaning of the cancer experience  f o r themselves.  Another theme t h a t c o n t i n u a l l y c h a r a c t e r i z e d the p a r t i c i p a n t s decision-making  was a uniqueness i n s t y l e .  Factors  that appeared to have the g r e a t e s t impact on the d e c i s i o n to choose or refuse r e c o n s t r u c t i o n were the p a r t i c i p a n t s ' perceptions of wholeness, f e e l i n g s about the p r o s t h e s i s , perceived b e n e f i t s versus r i s k s of surgery, and the a c q u i s i t i o n of i n f o r m a t i o n . These f a c t o r s i n f l u e n c e d each p a r t i c i p a n t ' s degree o f readiness to c o n s i d e r b r e a s t r e c o n s t r u c t i o n .  The p a r t i c i p a n t s  who chose to d e c l i n e b r e a s t r e c o n s t r u c t i o n were more l i k e l y to  149 have maintained a sense o f wholeness, accepted the p r o s t h e s i s , and not responded t o b r e a s t r e c o n s t r u c t i o n information as i n t e n s e l y as those who chose r e c o n s t r u c t i o n .  F o r those who chose  breast r e c o n s t r u c t i o n , a c h a r a c t e r i s t i c q u a l i t y was t h e i r excitement i n response t o information about b r e a s t reconstruction. Another major d i f f e r e n c e between the two p a r t i c i p a n t groups was t h a t those women who chose r e c o n s t r u c t i o n p e r c e i v e d only t h e p o s i t i v e aspects o f surgery, i n c o n t r a s t t o the women who d e c l i n e d r e c o n s t r u c t i o n , who p e r c e i v e d surgery as negative and risky.  In a d d i t i o n , women who d e c l i n e d b r e a s t  reconstruction  were not r e q u i r e d t o defend t h e i r d e c i s i o n t o the same extent as those who underwent t h i s surgery.  A l l participants stated that  they were s a t i s f i e d with the outcome o f t h e i r d e c i s i o n s . F i n a l l y , i t seems e v i d e n t from these accounts t h a t t h i s decision-making experienced  process i s amazingly complex.  These women  d i f f i c u l t y i d e n t i f y i n g the pertinent factors that  i n f l u e n c e d t h e i r decision-making  about b r e a s t r e c o n s t r u c t i o n . I t  i s only through the r i c h n e s s and depth o f these accounts t h a t a degree o f i n s i g h t and understanding  into this  decision-making  process can be a t t a i n e d . The f o l l o w i n g chapter w i l l i n t e r p r e t the s i g n i f i c a n c e o f the p a r t i c i p a n t accounts i n r e l a t i o n t o the l i t e r a t u r e review presented  i n Chapter Two.  150 CHAPTER 5 Discussion of the Findings  This chapter d i s c u s s e s t h e f i n d i n g s o f t h i s study i n r e l a t i o n to c u r r e n t p r o f e s s i o n a l and l a y l i t e r a t u r e . of t h i s d i s c u s s i o n i s two-fold.  The purpose  F i r s t l y , i t seeks t o promote  i n s i g h t i n t o f a c t o r s i n f l u e n c i n g whether women choose o r r e f u s e breast r e c o n s t r u c t i o n . decision-making  Secondly, i t demonstrates how the  process i n breast r e c o n s t r u c t i o n can be f u r t h e r  understood by e x p l o r i n g a woman's p e r s p e c t i v e . review presented  i n Chapter Two concluded  The l i t e r a t u r e  that s c i e n t i f i c a l l y  sound research r e l a t e d t o the decision-making  process i n b r e a s t  r e c o n s t r u c t i o n was s c a r c e , thereby s u b s t a n t i a t i n g the need t o study women's actual experience breast  i n making a d e c i s i o n  regarding  reconstruction.  The major themes r e c u r r i n g throughout the mastectomy and breast r e c o n s t r u c t i o n l i t e r a t u r e a l s o emerge i n t h i s  study.  Three a d d i t i o n a l themes, however, not as c l e a r l y a r t i c u l a t e d by the p r o f e s s i o n a l l i t e r a t u r e , arose from these f i n d i n g s .  It is  the researcher's i n t e n t t o d e t a i l these three themes:  wholeness,  the d o c t o r - p a t i e n t r e l a t i o n s h i p , and decision-making.  Although  other f i n d i n g s a r e recognized as important,  they w i l l not be  h i g h l i g h t e d i n as much d e t a i l . A d d i t i o n a l l i t e r a t u r e and research w i l l be u t i l i z e d i n t h i s discussion, including l i t e r a t u r e presenting a feminist p e r s p e c t i v e on women's experiences with b r e a s t  reconstruction.  151 The purpose o f t h i s study was to examine and d e s c r i b e women's perceptions o f the decision-making breast reconstruction.  process regarding  The conceptual framework f o r t h i s  d i s c u s s i o n o f f i n d i n g s w i l l focus on the three major themes: wholeness, the d o c t o r - p a t i e n t r e l a t i o n s h i p , and the decision-making Chapter  process.  These key themes were presented i n  Four. Loss o f Wholeness  Women Who Underwent Breast Reconstruction The m a j o r i t y o f the 13 women who underwent b r e a s t r e c o n s t r u c t i o n d e s c r i b e d f e e l i n g s about t h e i r l o s s o f wholeness f o l l o w i n g mastectomy.  These f e e l i n g s were expressed i n such  terms as l a c k i n g completeness,  l a c k i n g normalcy, not f e e l i n g  r i g h t , o r f e e l i n g u n l i k e themselves.  Loss o f p h y s i c a l wholeness  appeared t o cause a profound sense o f p s y c h o l o g i c a l l o s s t h a t affected their self-concept. The women r e p o r t e d f e e l i n g a decrease i n general  confidence,  self-esteem, and p h y s i c a l a t t r a c t i v e n e s s . F e e l i n g s about the mastectomy s i t e v a r i e d i n i n t e n s i t y from repugnance toward t h e i r i n c i s i o n s i t e and lack o f b r e a s t t o being only o c c a s i o n a l l y bothered by i t . Others wished t h a t symmetry c o u l d be r e s t o r e d t o them because they f e l t  unbalanced.  Several women f e l t t h a t t h e i r f e m i n i n i t y was decreased as a r e s u l t o f f e e l i n g l e s s whole.  This decreased sense o f f e m i n i n i t y  i n h i b i t e d t h e i r sexual e x p r e s s i o n , which reduced  sexual  152 s a t i s f a c t i o n with t h e i r p a r t n e r . The n e g a t i v e e f f e c t on s e l f - e s t e e m a r i s i n g from f e e l i n g s o f a l a c k o f wholeness was well v a l i d a t e d i n the l a y l i t e r a t u r e .  Van de Walle's book, F a l l i n g  from Grace (1984), p o i g n a n t l y expresses her anguish over the l o s s of wholeness f o l l o w i n g mastectomy. ...  I have been t o l d  I would get used to i t I have been t o l d t h a t a c c o r d i n g to the s h r i n k s I ' l l f i r s t f i n d anger then g r i e f and e v e n t u a l l y acceptance. I smile and nod. Fear roams through the hours erupts a t n i g h t i n v i o l e n t s e i z u r e s shame f o r e v e r averts my eyes from m i r r o r s . Pain a t times almost becomes a p l e a s u r e . A t e r r i b l e and new t e r r i t o r y . I wander there alone . . . (p. 24). Lack o f b o d i l y wholeness i s d e s c r i b e d by Snyder (1984) when she says: I f e l t l i k e such a nonwoman and hated myself f o r not being able to i n t e l l e c t u a l i z e out o f t h a t f e e l i n g . . . I'd c a t c h a glimpse o f my naked s e l f i n the m i r r o r . . .  i t j u s t never  153  stopped being a s u r p r i s e .  I t was such a shock t h a t I'd gasp  and then c r y . . . (p. 4 0 ) . The importance o f wholeness was i l l u s t r a t e d by S t o l a r ' s (1978) unpublished  survey o f mastectomy v o l u n t e e r s .  She  i n s t r u c t e d the volunteers t o "rank order t h e i r f e e l i n g s o f concern, a t the time o f surgery, with r e s p e c t t o f e m i n i n i t y , mothering ( n u r t u r i n g ) , s e x u a l i t y , wholeness and beauty" (p. 8 ) . The volunteers not only s t a t e d t h a t wholeness f o l l o w e d by f e m i n i n i t y was the most important  f o r them b u t maintained t h a t  wholeness was the major concern o f women they  counselled.  The f o l l o w i n g statement by S p l e t t e r (1982) i s c o n s i s t e n t with predominent views found i n the l a y l i t e r a t u r e , which  support  breast r e c o n s t r u c t i o n as the s o l u t i o n t o a woman's lack o f wholeness f o l l o w i n g mastectomy: I n t e r e s t i n b r e a s t r e c o n s t r u c t i o n i s not a s i g n t h a t a woman i s vain o r t r y i n g t o turn i n t o a sex symbol.  I t i s a sign  t h a t she wants t o regain a n a t u r a l , normal body contour and r e s t o r e what p s y c h o l o g i s t s c a l l body i n t e g r i t y (p. 164). This statement r e f l e c t s the thoughts expressed by most women i n the study.  T h e i r need t o r e s t o r e wholeness was t h e i r need alone  and was prompted by the d e s i r e t o regain t h e i r sense o f s e l f . C l i f f o r d ' s (1979) research f u r t h e r supports  Spletter's  viewpoint by i l l u s t r a t i n g t h a t a woman's sense o f f e m i n i n i t y goes beyond her sexual f e e l i n g s . Concepts o f f e m i n i n i t y were not n e c e s s a r i l y r e l a t e d t o  154 concerns about s e x u a l i t y ; most f r e q u e n t l y an inner sense o f f e m i n i n i t y seemed t o be i n v o l v e d .  These women s t r e s s e d  t h e i r own views o f f e m i n i n i t y r a t h e r than the views o f others about t h e i r femaleness predominated (p. 2 5 ) . Fear o f l o s s o f wholeness s t a r t e d f o r some women p r e o p e r a t i v e l y , as i l l u s t r a t e d by Parker  (1978).  My God, am I going t o have a mastectomy, then a hysterectomy? . . . Are they going t o chop away a t my body? ...  I don't want t o l i v e by being chopped i n t o l i t t l e  pieces.  One year we'll take t h i s , and another y e a r we'll  take t h a t (p. 5 9 ) . Despite t h e f a c t t h a t several women experienced a p r e o p e r a t i v e f e a r o f l o s i n g t h e i r b r e a s t , t h e m a j o r i t y o f women appeared r e l i e v e d a t the thought t h a t they would be r e c e i v i n g e f f e c t i v e treatment f o r cancer.  P r i o r t o surgery, the m a j o r i t y  of women were unable t o p r e d i c t the pervasive and powerful e f f e c t s that a l a c k o f wholeness would have on t h e i r l i v e s . Women Mho Refused Breast  Reconstruction  Although the women i n t h i s study have been separated i n t o two groups f o r purposes o f d i s c u s s i o n , the f i n d i n g s r e f l e c t e d an overlap between both groups regarding f e e l i n g s about wholeness. There were women who professed t o f e e l p s y c h o l o g i c a l l y whole and went on t o have breast r e c o n s t r u c t i o n ; c o n v e r s e l y , others who experienced some degree o f l o s s o f wholeness refused t h i s surgery.  From t h i s i t appears t h a t lack o f wholeness, although a  155 c r i t i c a l f a c t o r i n determining whether a woman may c o n s i d e r breast r e c o n s t r u c t i o n , i s not the s o l e p r e d i c t o r o f a woman's d e c i s i o n t o choose o r r e f u s e t h i s surgery. Perhaps the f a c t t h a t so few women go on t o have r e c o n s t r u c t i o n may be an i n d i c a t i o n t h a t , d e s p i t e a t r a n s i t o r y l o s s o f wholeness, most o f these women r e s o l v e t h e i r negative f e e l i n g s r e g a r d i n g l o s s o f wholeness.  I t i s d i f f i c u l t t o know  whether acceptance o f being s i n g l e - b r e a s t e d can be equated with f e e l i n g whole.  The general l i t e r a t u r e focuses on women  e x p e r i e n c i n g adjustment problems and f a i l s t o provide c o n c l u s i v e information on t h i s t o p i c .  Information r e l a t e d t o the wholeness  r e s o l u t i o n process i n women who do not c o n s i d e r b r e a s t r e c o n s t r u c t i o n would thus be i n v a l u a b l e t o h e a l t h p r o f e s s i o n a l s . We might ask:  Why a r e some women's s e l f - c o n c e p t s more v u l n e r a b l e  to l o s s o f wholeness than others?  How can h e a l t h p r o f e s s i o n a l s  assess whether a woman's l o s s o f wholeness i s t r a n s i t o r y o r o f a more permanent nature? Search f o r Wholeness S i m i l a r t o the m a j o r i t y o f women i n t h i s study, women portrayed i n the l a y l i t e r a t u r e i n i t i a l l y expected t o a d j u s t t o t h e i r mastectomy, given time.  However, when complete  acceptance  was not forthcoming, t h e i r r e s u l t i n g search f o r wholeness developed i n t o an urgent, compelling need. Jean Zalon's statement r e f l e c t s t h i s g r e a t need f o r wholeness and epitomizes the value assigned t o wholeness by the  156 lay l i t e r a t u r e . I was the one who was d i s s a t i s f i e d , s t i l l angry and r e b e l l i o u s a t the m u t i l a t i o n o f my body, s t i l l aching with incompleteness. ache.  Most o f the time, o f course, I h i d t h a t  Over the y e a r s I had l e a r n e d t o push the  d i s s a t i s f a c t i o n t o the back o f my mind . . . But t h e whole p o i n t was t h a t i t r e a l l y wasn't necessary — not anymore . . . A l l I wanted t o do was t o g e t back where I s t a r t e d , look the way I had once looked (1978, p. 3 2 ) . According to the f i n d i n g s o f t h i s study which support the l a y l i t e r a t u r e , l o s s o f wholeness was the most powerful  i n f l u e n c e on  those women who chose t o undergo b r e a s t r e c o n s t r u c t i o n . The p r o f e s s i o n a l l i t e r a t u r e , however, does not emphasize the degree to which wholeness, i n r e l a t i o n t o other f a c t o r s , a f f e c t s decision-making  regarding b r e a s t r e c o n s t r u c t i o n .  The wholeness needs o f those women who underwent b r e a s t r e c o n s t r u c t i o n d i f f e r e d markedly from each other. manifested  This was  i n the type o f s u r g i c a l r e s u l t each woman d e s i r e d .  S p l e t t e r (1982) s t r e s s e s the important p o i n t t h a t "our e x p e c t a t i o n s , p r i o r i t i e s , and f e e l i n g s about our own bodies can make a major d i f f e r e n c e i n our d e c i s i o n s " (p. 141).  T h i s was  found to be the case with those women who had had more than four breast r e c o n s t r u c t i o n s u r g e r i e s .  They tended t o be more  p e r f e c t i o n i s t i c and d e s i r e d a r e c o n s t r u c t i o n t h a t appeared as much l i k e a normal b r e a s t as p o s s i b l e .  A few women i n the study  157 s t a t e d t h a t they would keep on having surgery i f b e t t e r r e s u l t s were p o s s i b l e , but t h e i r p l a s t i c surgeons f e l t t h a t e v e r y t h i n g that could s a f e l y and reasonably be done had been done.  This  a t t i t u d e i s c l e a r l y i l l u s t r a t e d i n these women's comments about t h e i r breast r e c o n s t r u c t i o n . As f a r as I am concerned . . . I w i l l continue t o have more surgery as long as i t makes me f e e l b e t t e r o r as long as I feel i t i s necessary  (Berger & Bostwick, 1984, p. 177).  I would r e a l l y l i k e a n i p p l e t h a t s t i c k s o u t more; t h i s one is f l a t .  You know the t r u t h ?  [whispers]  Deep i n s i d e  myself, I am very happy t h a t I d i d i t , but I'm a f r a i d t h a t i f I l e t the doctor see t h a t , he w i l l stop working on me t o make i t b e t t e r (Snyder, 1984, p. 135). Another s t r i k i n g f e a t u r e o f the women who searched f o r wholeness was t h e i r t e n a c i t y i n pursuing t h i s g o a l .  Obstacles  such as r e s i s t a n c e o f s i g n i f i c a n t others and health p r o f e s s i o n a l s , e x t e n s i v e amounts o f surgery, and p h y s i c a l complications were f r e q u e n t l y encountered.  In s p i t e o f a l l these  i n h i b i t i n g f a c t o r s , these women were a r t i c u l a t e and a s s e r t i v e i n a c h i e v i n g t h e i r goal o f r e s t o r a t i o n by b r e a s t r e c o n s t r u c t i o n . Both p r o f e s s i o n a l and l a y l i t e r a t u r e record t h i s phenomenon. One wonders i f women who undergo b r e a s t r e c o n s t r u c t i o n a r e more equipped with the s k i l l s necessary t o achieve t h e i r personal goals than women who choose t o refuse r e c o n s t r u c t i o n .  I t i s also  158 p o s s i b l e t h a t the very process o f o b t a i n i n g b r e a s t r e c o n s t r u c t i o n , which i s not as a c c e p t a b l e t o s o c i e t y as wearing an external p r o s t h e s i s , f u r t h e r develops a woman's a s s e r t i v e n e s s , thus shaping her responses. Sandelowski's  (1981) p o r t r a y a l o f h e a l t h i s s i g n i f i c a n t f o r  those women who chose t o undergo b r e a s t r e c o n s t r u c t i o n . She states:  "Health i s the a b i l i t y t o change because we choose t o ,  because we experience pain with what we a r e a t present, and not because someone e l s e wants us t o change" (p. 93).  She contends  t h a t , "health i s f i n d i n g p l e a s u r e from our own bodies, p l e a s u r e that we give o u r s e l v e s o r allow o t h e r s , men o r women, t o g i v e us" (p. 9 3 ) . Those women i n the study who underwent r e c o n s t r u c t i o n played a c r i t i c a l r o l e i n t h e i r own h e a l t h management by exchanging t h e i r d i s f i g u r e m e n t and i t s a s s o c i a t i o n with i l l n e s s f o r a b e n e f i c i a l f e e l i n g o f wholeness and h e a l t h . The three women who c o n s u l t e d with a p l a s t i c surgeon and e v e n t u a l l y d e c l i n e d r e c o n s t r u c t i v e surgery o b v i o u s l y i n i t i a t e d more o f a search f o r a l t e r n a t i v e s than the general p o p u l a t i o n o f post-mastectomy women, who never see a p l a s t i c surgeon.  F o r two  of these women, the search f o r wholeness ended f o l l o w i n g one c o n s u l t a t i o n with the p l a s t i c surgeon.  The other woman who  d e c l i n e d r e c o n s t r u c t i o n c o n s u l t e d with the p l a s t i c surgeon three times before she decided a g a i n s t surgery. Although the v a s t m a j o r i t y o f women choose t o wear an  159 external p r o s t h e s i s o r have b r e a s t r e c o n s t r u c t i o n , a t h i r d  course  of a c t i o n e x i s t s . This a l t e r n a t i v e a l s o represents a search f o r wholeness and i n v o l v e s a woman's d e c i s i o n t o remain s i n g l e - b r e a s t e d without wearing a p r o s t h e s i s .  This l a s t  a l t e r n a t i v e i s not endorsed by s o c i e t y as an option o r presented in the p r o f e s s i o n a l l i t e r a t u r e .  Not s u r p r i s i n g l y , no woman i n  t h i s study mentioned the p o s s i b i l i t y o f p r e s e n t i n g h e r s e l f t o s o c i e t y as a s i n g l e - b r e a s t e d woman. This option i s , however, chosen by some women, as i l l u s t r a t e d by Audre Lorde (1980) i n h e r book, Cancer J o u r n a l s . She presents a f e m i n i s t p e r s p e c t i v e on t h e meaning o f her b r e a s t l o s s and i n d i c a t e s how she f e e l s the i s s u e needs t o be r e s o l v e d in order t o promote i n d i v i d u a l growth. I would l i e i f I d i d not a l s o speak o f l o s s . Any amputation i s a p h y s i c a l and psychic r e a l i t y t h a t must be i n t e g r a t e d into a new sense o f s e l f .  The absence o f my b r e a s t i s a  r e c u r r e n t sadness, but c e r t a i n l y not one t h a t dominates my life.  I miss i t , sometimes p i e r c i n g l y . When other  one-breasted women hide behind t h e mask o f p r o s t h e s i s o r t h e dangerous fantasy o f r e c o n s t r u c t i o n , I f i n d l i t t l e  support  in the broader female environment f o r my r e j e c t i o n o f what f e e l s l i k e a cosmetic sham. But I b e l i e v e t h a t s o c i a l l y sanctioned p r o s t h e s i s [ s i c ] i s merely another way o f keeping women with b r e a s t cancer s i l e n t and separate from each other (p. 16).  160  Lorde acknowledges  the pain invoked by l o s s o f wholeness.  However, she sees the s o l u t i o n t o r e s t o r i n g wholeness as i n s i d e one's s e l f r a t h e r than through the cosmetic s o l u t i o n s o f a p r o s t h e s i s or b r e a s t r e c o n s t r u c t i o n . The emphasis upon p h y s i c a l pretense a t t h i s c r u c i a l p o i n t i n a woman's r e c l a i m i n g o f her s e l f and her body-image . . . encourages women t o dwell i n t h e past r a t h e r than a f u t u r e . This prevents a woman from a s s e s s i n g h e r s e l f i n t h e p r e s e n t , and from coming t o terms with the changed planes o f her own body.  Since these then remain a l i e n t o her, b u r i e d under  p r o s t h e t i c d e v i c e s , she must mourn the l o s s o f her b r e a s t i n s e c r e t , as i f i t were the r e s u l t o f some crime o f which she were g u i l t y . . . I t encourages a woman t o focus her energies upon the mastectomy as a cosmetic occurrence, t o the e x c l u s i o n o f other f a c t o r s i n a c o n s t e l l a t i o n t h a t c o u l d i n c l u d e her own death (p. 5 7 ) . Lorde r e j e c t e d the s t e r e o t y p i c pressure o f s o c i e t y t o r e t u r n immediately t o her previous outwardly s e x u a l l y a t t r a c t i v e appearance by c o v e r i n g up her supposed d e f e c t . She worked through t h i s c r i s i s i n terms o f her own l i f e experience i n order that she c o u l d come t o a f u l l acceptance and a p p r e c i a t i o n o f her one-breasted s t a t e .  She urges other women to do the same.  Another example o f t h i s c h o i c e , Paula Armel (1981) expressed the f o l l o w i n g r e a l i t y d u r i n g her d e c i s i o n about wearing a p r o s t h e s i s f o l l o w i n g her mastectomy.  161 I wonder why I haven't seen more women going p u b l i c .  I f one  in 14 women has b r e a s t cancer, and 90 percent have mastectomies, there a r e a l o t o f s i n g l e - b r e a s t e d women, y e t we don't dare admit i t . I decide then, t o myself, t h a t I want t o t r y not wearing a p r o s t h e s i s (p. 2 2 ) . Armel supports Lorde's c o n v i c t i o n t h a t acceptance  o f one's  a l t e r e d body, i s the c r i t i c a l h e a l i n g f o r c e i n coming t o terms with a mastectomy. In view o f s o c i e t y ' s entrenched b i a s about what i s appropriate post-mastectomy behavior f o r the cancer p a t i e n t , i t i s h i g h l y l i k e l y t h a t women who r e f u s e t o use a p r o s t h e s i s w i l l be denied support from h e a l t h p r o f e s s i o n a l s and t h a t t h i s a l t e r n a t i v e w i l l not even be d i s c u s s e d as an o p t i o n . Lorde (1980) makes the p o i n t t h a t a t one time pregnancy i n women was concealed because i t was not s o c i a l l y acceptable f o r women to expose t h e i r p r i v a t e and embarrassing public.  c o n d i t i o n t o the  Snyder (1984), S p l e t t e r (1982), and Zalon (1978) a l l  c i t e experiences o f c r i t i c i s m from f r i e n d s and h e a l t h p r o f e s s i o n a l s during t h e i r quest f o r r e c o n s t r u c t i o n .  However, a  change i n p r e v a i l i n g a t t i t u d e s has been n o t i c e a b l e i n b r e a s t r e c o n s t r u c t i o n l i t e r a t u r e , as evidenced by the s h i f t from t r a d i t i o n a l views t o a more h o l i s t i c focus.  Given the n o n - s t a t i c  nature o f s o c i e t a l b e l i e f s , the c u r r e n t stigma towards the option of d e c l i n i n g t o wear a p r o s t h e s i s w i l l h o p e f u l l y l e s s e n i n t h e  162 future. Regaining Wholeness and Recovery Every woman i n t h i s study who f e l t a lack o f wholeness preceding b r e a s t r e c o n s t r u c t i o n f e l t t h a t her sense o f wholeness had been completely r e s t o r e d through r e c o n s t r u c t i o n  surgery.  This r e g a i n i n g o f wholeness was a powerful theme i n these women's accounts.  Both the l a y and p r o f e s s i o n a l l i t e r a t u r e c l a i m t h a t  even women who g e t only f a i r r e c o n s t r u c t i o n r e s u l t s a r e happy because i t i s a vast improvement over having a f l a t c h e s t .  This  c l a i m i s c o n s i s t e n t with the a s s e r t i o n s o f women i n t h i s study who underwent b r e a s t r e c o n s t r u c t i o n s u r g e r i e s .  The f o l l o w i n g  excerpt from Harvey (1980) who c i t e s Wade c l e a r l y i l l u s t r a t e s the s t r i k i n g d i f f e r e n c e t h a t b r e a s t r e c o n s t r u c t i o n makes i n t h e l i v e s of women who make t h e t r a n s i t i o n from non-wholeness t o wholeness. I f e l t as i f a shade had been r a i s e d , t h e darkness o f f e a r and anxiety l e f t me almost e n t i r e l y . . . f o r g o t t e n what happened t o me . . .  I have almost  I f e e l normal, and I  feel p r e t t y , and i t shows not only on my chest but i n my face and i n my heart (p. 100). A l l o f the women who underwent b r e a s t r e c o n s t r u c t i o n named two major b e n e f i t s o f t h i s surgery; f i r s t l y , r e s t o r a t i o n o f t h e i r wholeness and the dramatic change i n t h e i r s e l f - c o n c e p t and secondly, t h e i r a b i l i t y t o put the f e a r and sadness o f the cancer experience behind them. They were able t o accomplish  this  l a r g e l y because the grim p h y s i c a l reminder o f the b r e a s t l o s s was  163 gone. T h i s allowed these women t h e freedom t o s t a r t l i v i n g again, most with new p r i o r i t i e s i n l i f e as a r e s u l t o f t h e i r cancer  experiences.  Snyder (1984) d e s c r i b e s the anger f r e q u e n t l y invoked by the cancer  experience:  One o f the most i n s i d i o u s s i d e e f f e c t s o f cancer i s the impotent anger f e l t by t h e i n d i v i d u a l . Taking as p o s i t i v e a step as r e c o n s t r u c t i v e surgery helps enormously t o a l l e v i a t e that rage.  I t cannot negate the experience, but i t can  c e r t a i n l y c r e a t e a sense o f having more c o n t r o l i n an otherwise v i c t i m i z i n g s i t u a t i o n (p. 5 2 ) . One can e n v i s i o n the tremendous sense o f r e l e a s e t h a t b r e a s t r e c o n s t r u c t i o n gave t h i s woman, e n a b l i n g her t o put the cancer-mastectomy experience i n a meaningful her.  perspective for  The women i n the study were a l l able t o i d e n t i f y with the  f e e l i n g t h a t b r e a s t r e c o n s t r u c t i o n was something t h a t they had chosen t o do t h a t symbolized f o r them, perhaps, the v i c t o r y o f not only r e g a i n i n g t h e i r sense o f wholeness but a l s o c r e a t i n g a more d e f i n e d sense o f s e l f i n the process. By the same token, i t i s j u s t as important f o r a woman t o refuse the option o f r e c o n s t r u c t i o n i f i t i s not a r e l e v a n t choice f o r her.  Every post-mastectomy woman knows what the best  a l t e r n a t i v e i s f o r her, once she c o n s i d e r s the options a v a i l a b l e in r e l a t i o n t o her own needs. The f o l l o w i n g d e f i n i t i o n o f h e a l t h i s broad enough t o  164 encompass and v a l i d a t e a woman's reasons f o r choosing a p r o s t h e s i s , b r e a s t r e c o n s t r u c t i o n , o r t o be s i n g l e - b r e a s t e d as an adaptive response t o the l o s s o f wholeness a f t e r mastectomy. Sandelowski (1981) c i t e s Ullman who d e f i n e s health as " s t r i v i n g f o r a 'peace' t h a t allows us t o ' s i t and l i s t e n t o what i s i n s i d e of [us] without i n f l u e n c e ' " ( p . 93).  All participants  demonstrated i n the accounts t h a t they had l i s t e n e d t o t h e i r inner f e e l i n g s and made t h e i r own d e c i s i o n about b r e a s t r e c o n s t r u c t i o n i n r e l a t i o n t o what f e l t comfortable  f o r them. In  a d d i t i o n , personal growth as a r e s u l t o f experience with the l i f e and death i s s u e o f cancer was r e a l i z e d by most p a r t i c i p a n t s , r e g a r d l e s s o f the choice they made. Perhaps t h i s i s p a r t o f the s e l f - a c t u a l i z a t i o n process t h a t Lorde so e l o q u e n t l y d e s c r i b e s i n The Cancer J o u r n a l s . The D o c t o r - P a t i e n t  Relationship  E s t a b l i s h i n g Rapport The powerful impact o f the d o c t o r - p a t i e n t r e l a t i o n s h i p i s a s t r i k i n g theme i n the accounts o f the women who underwent b r e a s t reconstruction.  The f i n d i n g s i n d i c a t e t h a t there i s a tendency  f o r a woman who undergoes r e c o n s t r u c t i o n t o p e r c e i v e her surgeon as a g o d - l i k e person endowed with s p e c i a l q u a l i t i e s , i f not magical powers.  Schain (1980) o f f e r s the f o l l o w i n g  explanation  to e x p l a i n t h i s phenomenon. There s t i l l e x i s t s strong support . . . f o r the c o n v i c t i o n t h a t the p h y s i c i a n remains s i n g u l a r l y the a u t h o r i t y i n  165 medical management . . . The f e a r o f death and the d e s i r e t o l i v e , along with t h e b e l i e f t h a t the p h y s i c i a n has s p e c i a l power withheld from o r d i n a r y people, cause the average person t o b e l i e v e t h a t the p h y s i c i a n has more going f o r him than e x p e r t i s e alone, and o f t e n perceives [ s i c ] him as l a r g e r than l i f e (p. 1036). I t i s p o s s i b l e t h a t mastectomy p a t i e n t s a r e v u l n e r a b l e t o t h i s phenomenon because o f the trauma o f t h e i r surgery and the f e a r o f impending death, and t h e r e f o r e respond by p e r c e i v i n g t h e i r p h y s i c i a n s as a person with s p e c i a l powers.  The f o l l o w i n g  statement by a b r e a s t r e c o n s t r u c t i o n p a t i e n t c l e a r l y i l l u s t r a t e s her strong b e l i e f i n the power o f h e r surgeon. If I needed t o have my head severed, and he was going t o do i t , I would go i n t o the surgery with a l l o f the confidence in the world.  That i s how much f a i t h I have i n him . . . He  demonstrated h i s support by always having time t o e x p l a i n anything t h a t I wanted t o know . . . (Bostwick & Berger, 1984, p. 197). Each woman i n the study f e l t t h a t her p l a s t i c surgeon was empathetic,  understanding,  and s u p p o r t i v e r e g a r d l e s s o f whether  or not she underwent r e c o n s t r u c t i o n .  The women who r e f u s e d  breast r e c o n s t r u c t i o n a f t e r only one c o n s u l t a t i o n , however, d i d not express any thoughts t h a t the doctor's c a p a c i t i e s  transcended  o r d i n a r y human a b i l i t i e s , but s t r e s s e d t h a t he was s u p p o r t i v e , i n f o r m a t i v e , and appeared competent.  The woman who r e f u s e d  166 r e c o n s t r u c t i o n a f t e r seeing the p l a s t i c surgeon f o r three c o n s u l t a t i o n s was more outspoken than the above women i n her p r a i s e o f the p l a s t i c surgeon's empathy and c a r i n g .  T h i s woman  s t a t e d t h a t i f she ever changed her mind about having the surgery she had a l o t o f t r u s t i n t h i s surgeon and would want him t o do it. I t seems c l e a r from these f i n d i n g s t h a t t h e amount o f rapport developed between p a t i e n t and doctor was a t l e a s t p a r t i a l l y a f u n c t i o n o f the length o f time they spent t o g e t h e r . There a l s o appears t o be a l i n k between the complexity o f t h e s u r g i c a l procedures and t h e amount o f r e s p e c t each woman f e l t f o r her p l a s t i c surgeon.  F o r example, the woman who underwent 12  operations t o have her b r e a s t s r e c o n s t r u c t e d was more e n t h u s i a s t i c i n d e s c r i b i n g her p l a s t i c surgeon as a s u p e r i o r being than was a p a r t i c i p a n t who had had a one-stage b r e a s t reconstruction.  Time was not the only f a c t o r , however; i t  appears t h a t other i n f l u e n c e s were present and these, t o o , warrant e x p l a n a t i o n .  These f a c t o r s i n v o l v e t h e p a r t i c i p a n t s '  need t o see the p l a s t i c surgeon as magical and powerful and w i l l be explored l a t e r . Examination o f the t h e r a p e u t i c r e l a t i o n s h i p helps t o f u r t h e r e l u c i d a t e the d o c t o r - p a t i e n t r e l a t i o n s h i p . Bostwick  (1983) and  Goin and Goin (1981) s t r e s s the importance o f a t h e r a p e u t i c r e l a t i o n s h i p with c l i e n t s who c o n s i d e r b r e a s t r e c o n s t r u c t i o n . Carl Rogers (1951) developed the t h e o r e t i c a l concepts o f  167 C l i e n t - C e n t e r e d Therapy and l i s t s p r i n c i p l e s o f the i d e a l therapeutic r e l a t i o n s h i p : The t h e r a p i s t sees the p a t i e n t as a co-worker on a common problem. The t h e r a p i s t t r e a t s the p a t i e n t as an equal. The t h e r a p i s t i s well able t o understand  the p a t i e n t ' s  feelings. The t h e r a p i s t always f o l l o w s the p a t i e n t ' s l i n e o f thought (p. 5 3 ) . The above p r i n c i p l e s emphasize the e f f e c t i v e n e s s o f r e s p e c t and empathy i n e s t a b l i s h i n g a foundation f o r good rapport between health p r o f e s s i o n a l s and t h e i r c l i e n t s , a c l a i m t h a t i s well-documented i n t h e general h e a l t h - c a r e l i t e r a t u r e as well ( B u t l e r , 1976; Maguire, T a i t & Brooke, 1980; S i l b e r f a r b , 1977-78).  Rogers c l a i m s t h a t genuineness and u n c o n d i t i o n a l  warmth, which a r e communicated on a non-verbal  l e v e l , are the  essence o f an e f f e c t i v e r e l a t i o n s h i p between t h e r a p i s t and client.  The f i n d i n g s i n t h i s study reveal t h a t t h e women  perceived t h e i r p l a s t i c surgeons as having the t h e r a p e u t i c q u a l i t i e s t h a t c h a r a c t e r i z e Roger's C l i e n t Centered Therapy. Berger and Bostwick (1984) c i t e a woman who t a l k s about these personal q u a l i t i e s . L i k e one o f t h e study women, t h i s woman had p r e v i o u s l y had c o n t a c t with a p l a s t i c surgeon with whom she c o u l d not r e l a t e . When I met him, I l i k e d him immediately.  He has a g e n t l e ,  168 patient, loving personality ...  I chose him because he was  recommended, he had a b i l i t y , and he had a good bedside manner t h a t r e v e a l e d r e a l l o v e and concern . . . Most doctors a r e b r i l l i a n t .  U n f o r t u n a t e l y , most b r i l l i a n t people  do not have a human s i d e o f l o v e and compassion f o r people because these q u a l i t i e s don't seem t o come i n the same combination.  So when you do f i n d compassion and t a l e n t i n a  surgeon, you r e a l l y want t o l a t c h on t o him and enjoy your a s s o c i a t i o n because he i s a r a r e f i n d (p. 203). The admiration t h a t post-mastectomy women f e l t toward t h e i r doctors i s i n t e r e s t i n g . A f t e r a l l , as Sandelowski  (1981)  a s s e r t s , s o c i e t y p e r c e i v e s men as "being l e s s s e n s i t i v e , l e s s e x p r e s s i v e , l e s s n u r t u r a n t , and l e s s emotional than women" (p. 8 4 ) . Corea (1977) e x p l a i n s why male doctors might experience d i f f i c u l t y b u i l d i n g a rapport with t h e i r women p a t i e n t s . By t h e i r behavior, women sometimes appear t o c o n f i r m the s e x i s t views o f male p h y s i c i a n s .  They come from a s o c i a l  caste f o r e i g n t o men. There a r e c u l t u r a l d i f f e r e n c e s . Women have been c o n d i t i o n e d t o f r e e l y acknowledge t h e i r emotional d i f f i c u l t i e s and express t h e i r f e e l i n g s . To men t r a i n e d i n the s t o i c i s m o f the masculine s t e r e o t y p e , t h i s may appear t o be h y s t e r i c a l behavior (p. 7 8 ) . Given t h i s i n h e r e n t d i f f e r e n c e i n the s o c i a l c o n d i t i o n i n g o f men and women, i t makes sense t h a t Stevens e t a l . (1984) d i s c o v e r e d that a l l o f t h e i r p a t i e n t s s t a t e d how glad they were  169 to have a female p l a s t i c surgeon. They unanimously d e s c r i b e d a c e r t a i n empathy t h a t they f e l t from the female p l a s t i c surgeon t h a t they f e l t would be d i f f i c u l t t o o b t a i n from a male p h y s i c i a n . . . When the male surgeons seemed t o focus e q u a l l y on cosmetic and s u r g i c a l concerns, the p a t i e n t s experienced them as more h e l p f u l and c a r i n g (p. 624). F u r t h e r , the very nature o f a woman's f e e l i n g s about her breasts i s l i k e l y t o invoke a s s o c i a t i o n s such as sexual a c t i v i t y or b r e a s t f e e d i n g . T h e r e f o r e , a male p h y s i c i a n i s l i k e l y t o a u t o m a t i c a l l y t r i g g e r s e l f - p r o t e c t i o n i n any p a t i e n t when he becomes the a u t h o r i t y and takes charge o f her b r e a s t .  It is  i n t e r e s t i n g t h a t t h i s phenomenon d i d not take place f o r most o f the women i n the study.  T h i s i s l i k e l y due t o the woman's b e l i e f  that the p l a s t i c surgeon p e r c e i v e d her as an i n d i v i d u a l with s p e c i a l needs and planned h i s s u r g i c a l i n t e r v e n t i o n s a c c o r d i n g l y . The women a l s o viewed t h e i r p l a s t i c surgeon as competent, which i s a q u a l i t y commonly i d e n t i f i e d as a male t r a i t (Sandelowski, 1981).  A need f o r t r u s t i n her p l a s t i c surgeon's  competency was an important element i n the bonding process between each woman and her surgeon, e s p e c i a l l y i f she decided t o undergo r e c o n s t r u c t i o n . One e x p l a n a t i o n t h a t o f f e r s i n s i g h t i n t o understanding the powerful l e v e l o f r a p p o r t between these women and t h e i r p l a s t i c surgeons comes from viewing the surgeon's behaviors from a  170  f e m i n i s t p e r s p e c t i v e . Demetrakapoulos the f o l l o w i n g feminine q u a l i t i e s :  (1983) makes r e f e r e n c e t o  " r e c e p t i v e , empathetic . . .  p r e s e r v a t i v e , " which appear t o c o r r e l a t e with the s u p p o r t i v e , n u r t u r i n g behaviors shown by t h e p l a s t i c surgeons t o t h e i r women p a t i e n t s (p. 21). Women would more l i k e l y be able t o i d e n t i f y with t h i s behavior s i n c e i t embodies the way they have been conditioned to relate to others. I t appears t h a t there was a harmonious b l e n d i n g o f both feminine and masculine t r a i t s i n the p l a s t i c surgeons  which  l i k e l y c r e a t e d t h e r a p p o r t between themselves and t h e i r patients.  Sandelowski  (1981) c i t e s Bern as saying t h a t  i n d i v i d u a l s who show a combination o f male and female t r a i t s a r e "androgynous"  and "may be more adaptable i n a v a r i e t y o f c o n t e x t s  than e i t h e r 'masculine o r feminine' males and females" (p. 9 1 ) . Given t h i s , i t i s important t o r e c o g n i z e t h a t a post-mastectomy woman i s more l i k e l y t o form a r a p p o r t with a p l a s t i c surgeon who possesses both masculine and feminine t r a i t s than a surgeon who demonstrates e i t h e r masculine o r feminine c h a r a c t e r i s t i c s o n l y . C r e a t i n g a Demi-God Women who undergo b r e a s t r e c o n s t r u c t i o n i n v e s t power i n the p l a s t i c surgeon.  I t appears t h a t some degree o f r a p p o r t between  the woman and her p l a s t i c surgeon was necessary i n order f o r the woman t o endow him with g o d - l i k e powers.  The g r e a t e r the  p e r c e i v e d rapport between the woman and her doctor, the g r e a t e r l i k e l i h o o d t h a t she would put him on a pedestal when d e s c r i b i n g  171 their interaction.  Such behavior has been noted i n other women  undergoing b r e a s t r e c o n s t r u c t i o n .  Berger and Bostwick (1984) and  Snyder (1984) c i t e the f o l l o w i n g women as examples o f t h i s . A f t e r every o p e r a t i o n I t h i n k t h a t I w i l l never go through t h i s again . . . But then a f t e r a l i t t l e w h i l e I r e c o n s i d e r ...  I f my p l a s t i c surgeon came i n today and s a i d t h a t he  wanted t o operate again next week t o make them more symmetrical, I'd say okay (Berger & Bostwick, 1984, p. 177).  My f i r s t implant was too h i g h , round and f i r m i n the beginning.  A t f i r s t I was a f r a i d t o go back t o the surgeon  . . . L a s t time he s a i d , " T h i s i s not a good enough r e s u l t . So we're doing i t over" . . . the problem.  I was g l a d t h a t he r e c o g n i z e d  I thought I would j u s t have t o l i v e with i t  that way (Snyder, 1984, p. 134). Both women appear t o have a u t o m a t i c a l l y accepted t h e i r p l a s t i c surgeon's d e f i n i t i o n o f a good r e s u l t from b r e a s t reconstruction.  The second e x c e r p t shows the p a t i e n t t a k i n g no  r e s p o n s i b i l i t y f o r communicating her concerns t o the surgeon. She had l e a r n e d t o expect him t o take f u l l r e s p o n s i b i l i t y and t o be a l l - k n o w i n g when i t came t o f u l f i l l i n g her needs. Johnson (1978) contends t h a t p h y s i c i a n s a r e accorded high s t a t u s i n our s o c i e t y .  P a t i e n t s , however, u s u a l l y d e f i n e  themselves as having low s t a t u s and t h i s r e s u l t s i n them f e e l i n g and a c t i n g powerless i n the d o c t o r - p a t i e n t r e l a t i o n s h i p . The  172 above researcher d i s c u s s e s how s t a t u s r e l a t e s t o power. Two t h i n g s happen when a person has high s t a t u s .  F i r s t , the  high s t a t u s i t s e l f can form a base o f power with which the person can i n f l u e n c e . This i s a form o f l e g i t i m a t e power. Second, high s t a t u s can give people g r e a t e r leeway i n how they i n f l u e n c e others . . . Sometimes high s t a t u s and high power a r e synonymous, s i n c e h i g h - s t a t u s people o f t e n possess the other determinants  f o r power use:  resources, e x p e r t i s e ,  and confidence (p. 304). The power o f the p h y s i c i a n a l s o emanated from h i s p e r c e i v e d prowess as a surgeon.  The women had almost u n l i m i t e d confidence  in the a b i l i t y o f t h e i r p l a s t i c surgeon t o operate on them.  This  supreme t r u s t appears t o have been e s t a b l i s h e d during the c o n s u l t a t i o n p e r i o d , well i n advance o f the f i r s t b r e a s t reconstruction.  Once i n place i t never wavered, d e s p i t e  c o m p l i c a t i o n s which a f f e c t e d a few o f the women i n t h i s study. They appeared w i l l i n g t o undergo any amount o f r i s k and repeated surgery t o c o r r e c t the c o m p l i c a t i o n .  Thus, both the f i n d i n g s o f  t h i s study and the l i t e r a t u r e reveal numerous examples o f the power!essness o f post-mastectomy women versus the powerfulness o f their  surgeon. One can speculate as t o whether t h i s f a s c i n a t i n g process can  be t o t a l l y e x p l a i n e d by the power d i f f e r e n t i a l between surgeon and p a t i e n t , o r whether a d d i t i o n a l f a c t o r s a r e o p e r a t i n g . would women w i l l i n g l y and e a g e r l y submit t h e i r bodies t o be  Why  173 a l t e r e d s u r g i c a l l y , knowing a l l the i n h e r e n t r i s k s ? A p e r t i n e n t f a c t o r appeared to be the women's a b i l i t y to minimize surgical risks.  these  From what i s known about the importance  of  wholeness, i t i s l i k e l y t h a t the need f o r r e s t o r a t i o n was so compelling t h a t i t i n f l u e n c e d t h e i r a t t i t u d e , making the o p t i o n of surgery more a t t r a c t i v e . C o g n i t i v e l y supporting the p r e f e r r e d d e c i s i o n , while r a t i o n a l i z i n g the r e j e c t e d option as even l e s s a t t r a c t i v e i s r e f e r r e d to as ' b o l s t e r i n g ' by Jam's and Mann (1977).  These women, then, e f f e c t i v e l y u t i l i z e d the b o l s t e r i n g  process.  T h i s f a c t was e v i d e n t i n t h e i r negative p e r c e p t i o n o f  going through l i f e with one b r e a s t as compared to the a n t i c i p a t e d joy of having t h e i r b r e a s t r e s t o r e d . The concept of c o g n i t i v e dissonance f u r t h e r e x p l a i n s the women's a t t i t u d e s toward the p e r c e i v e d trauma of surgery f o r the purpose of b r e a s t r e c o n s t r u c t i o n .  Sandelowski  (1981) quotes  Festinger: Whenever we are c o n f r o n t e d with c h o i c e s , we are l i k e l y to experience dissonance or a discordance between what we b e l i e v e and know to be t r u e about the c h o i c e s , and a l t e r n a t i v e e x p l a n a t i o n s o f the t r u t h about the c h o i c e s ...  In some way, the person has to e i t h e r change h i s / h e r  b e l i e f s to accord with h i s / h e r a c t i o n s , or r a t i o n a l i z e or j u s t i f y the e x i s t i n g b e l i e f to reduce the disharmony c r e a t e d by being exposed to a c o n t r a r y b e l i e f . discordance i s uncomfortable  Disharmony or  and t h e r e f o r e motivates a  174 person t o do something about i t i n order t o c r e a t e c o g n i t i v e consonance (p. 1 0 ) . Another f i n d i n g t h a t c o u l d be the d i r e c t r e s u l t o f women e x p e r i e n c i n g c o g n i t i v e dissonance and r e a c t i n g t o i t by b o l s t e r i n g i s t h e i r tendency t o e l e v a t e t h e surgeon t o t h e s t a t u s of a demi-god.  T h i s makes sense when one c o n s i d e r s t h a t a woman  i s not l i k e l y t o f e e l secure l e t t i n g anyone a l t e r her body who i s not p e r c e i v e d as extremely competent.  Fears about t h e i n h e r e n t  r i s k s o f b r e a s t r e c o n s t r u c t i v e surgery a r e thus minimized i f the women p e r c e i v e d t h e i r surgeons as having m a g i c a l , super-human powers.  The a b i l i t y t o minimize i n h e r e n t r i s k s was seen most  c l e a r l y i n those women who underwent m u l t i p l e s u r g e r i e s . Although women's accounts i n both t h i s study and t h e l i t e r a t u r e appear t o support the power d i f f e r e n t i a l  between  surgeon and p a t i e n t , t h e women themselves d i d n o t seem t o perceive i t .  The m a j o r i t y o f women who underwent m u l t i p l e  r e c o n s t r u c t i o n procedures tended t o p e r c e i v e the r e l a t i o n s h i p between themselves and t h e i r p l a s t i c surgon as a team e f f o r t , i n which they both worked t o g e t h e r t o a c h i e v e the d e s i r e d goal o f r e s t o r i n g b r e a s t contour. A t times, t h e r e l a t i o n s h i p appeared t o be more o f a mutual needs s h a r i n g e x p e r i e n c e , r a t h e r than a s t r i c t l y c o l l a b o r a t i v e e f f o r t aimed a t meeting the woman's needs.  One can surmise t h a t the woman's needs might i n c l u d e the  need f o r i n t e n s e i n t e r e s t and involvement on t h e p a r t o f the p l a s t i c surgeon, w h i l e the p l a s t i c surgeon might need t o c r e a t e  175 as p e r f e c t a b r e a s t as p o s s i b l e .  These complementary needs c o u l d  t h e r e f o r e be f u l f i l l e d . This discrepancy between t h e woman's image o f the powerful doctor versus her p e r c e p t i o n o f t h e i r teamwork r e l a t i o n s h i p can perhaps be e x p l a i n e d by the f o l l o w i n g f a c t o r s . Although  each  woman had no c o n t r o l over the end r e s u l t o f the r e c o n s t r u c t i o n , she could decide on the amount o f surgery she would e v e n t u a l l y undergo.  In a d d i t i o n , there i s a strong l i k e l i h o o d t h a t the  empathic r e l a t i o n s h i p between the woman and her surgeon would reduce f e e l i n g s o f powerlessness on her p a r t and a t t h e same time enhance the teamwork q u a l i t y o f t h e i r r e l a t i o n s h i p . To r e i t e r a t e , the women's compelling need f o r wholeness and t h e i r a b i l i t y t o e n v i s i o n r e g a i n i n g i t through r e c o n s t r u c t i o n i s a powerful t h i s surgery.  breast  f a c t o r i n t h e i r d e s i r e t o undergo  Every woman i n the study emphasized the p o s i t i v e  aspects o f r e c o n s t r u c t i o n over the negative m u l t i p l e l o s s e s invoked by the mastectomy.  They appeared eager and e x c i t e d about  each step o f the r e c o n s t r u c t i v e procedure.  Sandelowski (1981)  s t a t e s t h a t "motivation i s a l s o a r e f l e c t i o n o f self-esteem and b e l i e f i n the a b i l i t y t o c o n t r o l one's d e s t i n y " (p. 9 ) .  This  b e l i e f c h a r a c t e r i z e s those women who b e l i e v e d i n the value o f breast r e c o n s t r u c t i o n f o r themselves. The Decision-Making  Process  P r o f e s s i o n a l l i t e r a t u r e r e l a t e d t o decision-making was explored t o gain i n s i g h t i n t o the f i n d i n g s on  decision-making.  176 As s t a t e d i n Chapter Two, the a v a i l a b l e p r o f e s s i o n a l l i t e r a t u r e revealed a paucity o f information r e l a t e d s p e c i f i c a l l y t o decision-making  about b r e a s t r e c o n s t r u c t i o n .  The m a j o r i t y o f  health-care research on women's decision-making  focuses on the  d e c i s i o n t o d e l i v e r o r abort i n t h e event o f an unwanted pregnancy.  Given the moral i m p l i c a t i o n s o f a b o r t i o n , t h i s  experience was thought t o be too d i s s i m i l a r t o the b r e a s t r e c o n s t r u c t i o n d e c i s i o n t o be u s e f u l . As an a l t e r n a t i v e , f e m i n i s t l i t e r a t u r e t h a t explored p o s s i b l e ways t h a t women p e r c e i v e and c o n c e p t u a l i z e events i n t h e world around them was drawn on. I n s i g h t i n t o these c o g n i t i v e processes enhanced understanding process.  o f women's  decision-making  This l i t e r a t u r e was p a r t i c u l a r l y h e l p f u l i n  i n t e r p r e t i n g the f i n d i n g s o f t h i s study, given t h e f a c t t h a t most of these women d i d not appear t o f o l l o w a systematic  process.  This f i n d i n g stands i n d i r e c t c o n t r a s t t o t h e t r a d i t i o n a l view held by p s y c h o l o g i c a l d e c i s i o n t h e o r i s t s , who maintain  that  an i n d i v i d u a l can only make a good d e c i s i o n i f a s p e c i f i c r a t i o n a l procedure i s adhered t o .  To r e i t e r a t e from Chapter Two,  J a n i s and Mann (1977) proposed a model o f " v i g i l a n t decision-making"  t h a t i n c l u d e d seven steps and contend t h a t these  steps a r e a c r i t i c a l p a r t o f any decision-making  process.  The f i n d i n g s reveal t h a t p a r t i c i p a n t s completed some o f these steps t o v a r y i n g degrees but omitted others.  The m a j o r i t y  of women appeared t o miss out e n t i r e steps o f the above l o g i c a l  177 d e l i b e r a t i o n process and then a r r i v e a t an almost instantaneous conclusion.  They c o u l d not a r t i c u l a t e t h e d e c i s i o n p r o c e s s , only  that they always knew they d e s i r e d b r e a s t r e c o n s t r u c t i o n from the beginning. The women i n the study who decided t o undergo r e c o n s t r u c t i o n appeared t o have made up t h e i r minds before they c o n s u l t e d with a p l a s t i c surgeon, whereas the women who r e f u s e d t h i s surgery d i d not make up t h e i r minds u n t i l a f t e r t a l k i n g with the p l a s t i c surgeon.  I t would be i n t e r e s t i n g t o know i f women who do not  seek out a p l a s t i c surgeon make up t h e i r minds t o r e j e c t b r e a s t r e c o n s t r u c t i o n i n t h e same c o n v i n c i n g and spontaneous manner as some o f the women who chose t h i s surgery. One wonders i f i t i s p o s s i b l e f o r women t o go through the steps o f t h e t r a d i t i o n a l decision-making process a t a subconscious l e v e l .  Perhaps, too, t h e r e t r o s p e c t i v e nature o f  t h i s study may have made i t d i f f i c u l t f o r the women t o r e c a l l the steps i n t h e i r decision-making.  Another f a c t o r t o c o n s i d e r i s  that i n d i v i d u a l s not accustomed t o d e s c r i b i n g t h e i r d e c i s i o n terminology would have d i f f i c u l t y a r t i c u l a t i n g t h e i r experience in these terms. The data suggest, however, t h a t many o f these women d i d not use any s y s t e m a t i c decision-making p r o c e s s .  This v i g i l a n t  process i s above a l l r a t i o n a l , and one s p e c u l a t e s how o f t e n people a c t u a l l y have the time o r m o t i v a t i o n t o think through the d e c i s i o n process so c l e a r l y .  The a s s e r t i o n by d e c i s i o n t h e o r i s t s  178 that a d e c i s i o n i s good o r bad based on such a r b i t r a r y c r i t e r i a appears too s i m p l i s t i c t o have complete v a l i d i t y f o r d e c i s i o n s with the emotional impact o f b r e a s t r e c o n s t r u c t i o n s u r g e r y . The f a c t t h a t every woman was s a t i s f i e d with her d e c i s i o n and s p e c i f i e d t h a t she would make t h e same d e c i s i o n i f she were given the o p p o r t u n i t y a g a i n , suggests t h a t the v i g i l a n t decision-making process was not r e q u i r e d t o a r r i v e a t a s a t i s f a c t o r y outcome. Perhaps, what might appear t o be a r a t i o n a l d e c i s i o n t o one person may not appear so t o another i n d i v i d u a l . Given t h i s emphasis on r a t i o n a l i t y , do r i s k s e x i s t i n the form o f unexpected setbacks o r p o s t - d e c i s i o n a l r e g r e t f o r these women who do not use a v i g i l a n t model o f decision-making?  There may be e x i s t i n g  d e c i s i o n processes t h a t e x p l a i n the nature o f these f i n d i n g s more e f f e c t i v e l y than those p a t t e r n e d a f t e r such a r i g i d , t r a d i t i o n a l model.  The f e m i n i s t l i t e r a t u r e g i v e s d i r e c t i o n f o r examining the  concept o f i n t u i t i o n i n women's t h i n k i n g by suggesting t h a t women draw on i n t u i t i o n when a r r i v i n g a t a d e c i s i o n . Rational Versus I n t u i t i v e Decision-Making In Ebony (1979), P o u s s a i n t s t a t e s " a l l people have the p o t e n t i a l f o r i n t u i t i o n , but women have probably used i t more" (p. 104).  She reasons t h a t i n t u i t i o n i s f o s t e r e d c u l t u r a l l y i n  women because they a r e s o c i a l i z e d t o r e l y on t h e i r emotions and experiences while men a r e encouraged t o be more a n a l y t i c a l . Authors such as Fee (1983) maintain t h a t s o c i e t y ' s values promote the b e l i e f t h a t i n t u i t i v e t h i n k i n g i s synonomous with  179 being female.  The f o l l o w i n g e x c e r p t i l l u s t r a t e s the marked  c o n t r a s t between the p e r c e i v e d r a t i o n a l i t y o f men and the p e r c e i v e d i r r a t i o n a l and i n t u i t i v e nature o f women. Man i s seen as the maker o f h i s t o r y , but woman provides h i s connection with nature; she i s the mediating f o r c e between man and nature, a reminder o f h i s c h i l d h o o d , a reminder o f the body, and a reminder o f s e x u a l i t y , p a s s i o n , and human connectedness.  She i s the r e p o s i t o r y o f emotional l i f e and  of a l l the n o n r a t i o n a l elements o f human experience (p. 12). S h e r i f (1979) c l a i m s t h a t t h i s s t e r e o t y p i c n o t i o n t h a t women and men t h i n k d i f f e r e n t l y i s based s o l e l y on the p e r c e i v e d b i o l o g i c a l s u p e r i o r i t y of man.  She sees the male as " r e c e i v i n g high r a t i n g s  on a v a r i e t y of c h a r a c t e r i s t i c s denoting competence, emotional m a t u r i t y , and r e s o u r c e f u l n e s s , and the female r e c e i v i n g high r a t i n g s on t r a i t s suggesting warmth, nurturance, and e x p r e s s i v e n e s s " (p. 157). The f o l l o w i n g c o n c l u s i o n s are made i n the a r t i c l e e n t i t l e d "Female I n t u i t i o n " i n Ebony (1979): I n t u i t i v e t h i n k e r s , then, are the o p p o s i t e of s y s t e m a t i c , or s c i e n t i f i c minds.  Whereas s c i e n t i f i c c o n c l u s i o n s use  l i n e a r , organized thought based on u n i v e r s a l modes o f r a t i o n a l reasoning, i n t u i t i v e c o n c l u s i o n s r e s u l t from some s t o r e d pool of cues.  Such people s o l v e problems by t r i a l  and e r r o r , and t h e i r wisdom s p r i n g s from the amalgam of t h e i r l i f e ' s experience (p. 102).  180 I t appears t h a t the t r a d i t i o n a l r a t i o n a l model o f " v i g i l a n t decision-making" was designed by and f o r male decision-makers. Perhaps women who made i n s t a n t d e c i s i o n s about wanting b r e a s t r e c o n s t r u c t i o n were r e l y i n g on more o f an i n t u i t i v e model t o a r r i v e a t the best d e c i s i o n f o r themselves.  F o r these women,  t h e i r d e c i s i o n r e p r e s e n t s an e m o t i o n a l l y - c h a r g e d commitment t o having t h e i r wholeness r e s t o r e d . Both the l i t e r a t u r e r e g a r d i n g i n t u i t i o n and t h e f i n d i n g s o f t h i s study support t h e f a c t t h a t cues from the environment were a c r i t i c a l f a c t o r i n the decision-making process f o r some women. Women who made i n t u i t i v e d e c i s i o n s were more s e n s i t i v e on an unconscious l e v e l t o environmental cues r e g a r d i n g b r e a s t reconstruction.  I t appears as i f these women were c o n t i n u a l l y  p r o c e s s i n g i n f o r m a t i o n but were not aware o f i t .  When t h e women  t a l k e d about the meaning o f these cues, t h e i r words were e m o t i o n a l l y laden. These environmental cues acted more as a c a t a l y s t f o r those women who chose b r e a s t r e c o n s t r u c t i o n on an i n t u i t i v e l e v e l than f o r those women who chose r e c o n s t r u c t i o n by u t i l i z i n g a r a t i o n a l model o f c o n s c i o u s l y weighing the pros and cons o f t h e i r decision.  According t o the f i n d i n g s , those women who chose  b r e a s t r e c o n s t r u c t i o n were more l i k e l y , as a group, t o favour an i n t u i t i v e over a r a t i o n a l model o f decision-making when compared to those who r e f u s e d r e c o n s t r u c t i o n .  I n t u i t i v e decision-making,  then, i s c h a r a c t e r i z e d by a heightened s e n s i t i v i t y t o  181 environmental  cues, emotionally-based  f e e l i n g s i n connection  with  the d e c i s i o n , and a snap o r i n s t a n t d e c i s i o n which does not allow f o r an a n a l y t i c a l weighing o f consequences. The f o l l o w i n g statement by a woman interviewed by Berger and Bostwick (1984) i l l u s t r a t e s how she may have been i n f l u e n c e d by i n t u i t i o n i n her d e c i s i o n t o pursue b r e a s t r e c o n s t r u c t i o n . She was o r i g i n a l l y a t t r a c t e d t o the idea o f r e c o n s t r u c t i o n f o l l o w i n g exposure t o several cues a s s o c i a t e d with t h i s surgery.  She was  f e a r f u l o f others i n t e r p r e t i n g her d e s i r e f o r r e c o n s t r u c t i o n as s o l e l y based on v a n i t y .  Therefore, she f e l t compelled t o give  other reasons regarding her need f o r r e c o n s t r u c t i o n .  Afterwards,  t h i s woman acknowledged t h a t t h e wish t o appear normal and f e e l good about her appearance again were t h e r e a l reasons  underlying  her d e c i s i o n . Then, I s t a r t e d t o pick up an a r t i c l e here and an a r t i c l e there on b r e a s t r e c o n s t r u c t i o n and every time I turned on the T.V. there was P h i l Donahue o r someone e l s e t a l k i n g about i t , and I would say . . . Maybe people w i l l think I'm v a i n , or they w i l l t h i n k :  'Why d i d she do that?  She was  p e r f e c t l y f i n e the way she was' . . . C e r t a i n l y , I t o l d myself, r e c o n s t r u c t i o n i s something you want, j u s t because of the p r o s t h e s i s and t o make y o u r back f e e l b e t t e r . . . Later, ...  I r e a l i z e d t h a t t o be t o t a l l y honest, I wanted  to look good again ( p . 166). Another woman made a quick d e c i s i o n t o undergo b r e a s t  182 r e c o n s t r u c t i o n a f t e r r e c e i v i n g information i n the Reach t o Recovery program and meeting women who were e n t h u s i a s t i c about having had r e c o n s t r u c t i o n themselves. shouldn't I do t h i s ?  I want t o be 'whole' again" (Berger &  Bostwick, 1984, p. 196). the decision-making  "Why not me? Why  Both o f these women's experiences  experiences  echo  o f the women i n t h i s study.  It i s important t o bear i n mind t h a t a woman making a d e c i s i o n about b r e a s t r e c o n s t r u c t i o n i s not l i m i t e d t o using only an i n t u i t i v e process o r only a r a t i o n a l decision-making  process.  In Luker's (1975) study o f a b o r t i o n and t h e women's d e c i s i o n not to use b i r t h c o n t r o l , she contends t h a t the d e c i s i o n process can have both r a t i o n a l and i n t u i t i v e elements.  She claims t h a t t h e  women used a r a t i o n a l model i n t h a t t h e i r decision-making  was  designed t o e f f e c t t h e i r personal g o a l s .  that  Luker maintains  even i f a p a r t i c i p a n t ' s d e c i s i o n i s not considered r a t i o n a l from a health p r o f e s s i o n a l ' s p e r s p e c t i v e , i t s v a l i d i t y i s recognized for t h a t i n d i v i d u a l . She goes on t o s t a t e t h a t the choices i n the d e c i s i o n process "are not always e x p l i c i t o r c l e a r l y articulated:  i n perhaps the m a j o r i t y o f l i f e s i t u a t i o n s , t h i s  c a l c u l a t i o n o f the ' r i s k s o f l i f e ' i s a s u b t l e , i n t u i t i v e , c o n t i n u i n g process" (p. 78).  According t o the f i n d i n g s , several  women appeared t o u t i l i z e both an i n t u i t i v e and r a t i o n a l type o f reasoning when making t h e i r d e c i s i o n . One should not assume t h a t even i f a woman appears t o a c t more i n t u i t i v e l y i n a d e c i s i o n such as breast  reconstruction,  183 which may have emotional  overtones, t h a t she would not make other  d a i l y d e c i s i o n s using a more systematic s t y l e . I t i s impossible to know, as p r e v i o u s l y mentioned, i f i n d i v i d u a l s own a c h a r a c t e r i s t i c d e c i s i o n s t y l e o r i f t h e i r d e c i s i o n s t y l e s change in r e l a t i o n t o s i t u a t i o n a l f a c t o r s . We do not know what k i n d o f d e c i s i o n s use which model and t o what degree an i n d i v i d u a l uses the r a t i o n a l and/or i n t u i t i v e model.  Factors that influence  adherence to s p e c i f i c models have n o t been s t u d i e d . McMillan (1982) claims t h a t , c o n t r a r y t o s o c i e t y ' s s t e r e o t y p i c p e r s p e c t i v e , a case cannot be made supporting the s u p e r i o r i t y o f r a t i o n a l thought over i n t u i t i v e thought. The view t h a t a p a r t i c u l a r accomplishment o r s k i l l depends upon i n t u i t i o n does n o t suggest t h a t such knowledge excludes thought and s u s t a i n e d e f f o r t . To d e f i n e a judgement as one based on i n t u i t i o n draws a t t e n t i o n t o the way i n which the f a c t s o f a p a r t i c u l a r s i t u a t i o n s t r i k e the agent and s t a t e s that t h i s way o f seeing t h i n g s o r i g i n a t e s , i n a sense, s o l e l y with him. Consequently, h i s ideas and judgements a r e not r e d u c i b l e to a s t r a i g h t f o r w a r d d e s c r i p t i o n o f the s i t u a t i o n about which he i s t h i n k i n g . . . The d i s t i n c t i o n , then, between s c i e n t i f i c o r ' r a t i o n a l ' knowledge and i n t u i t i v e knowledge i s a question not so much o f d i f f e r e n t reasoning processes or t h e o r i e s o f knowledge as o f the p e c u l i a r l y d i f f e r e n t r o l e s which the notions o f l e a r n i n g and teaching assume i n the two contexts (p. 4 1 ) .  184 I t i s i n t e r e s t i n g t h a t the importance o f i n t u i t i o n , as r e f l e c t e d in the f i n d i n g s , confirms t o some degree t h a t the way i n which s o c i e t y has c o n d i t i o n e d women t o think has been v a l i d a t e d . T h i s excerpt by McMillan s t r e s s e s the value and need f o r both types o f reasoning i n our s o c i e t y . Although there were s i m i l a r i t i e s i n the d e c i s i o n s t y l e among women i n the study, i t i s c r i t i c a l t o note t h a t every woman's s t y l e was unique.  Berger and Bostwick (1984) found t h i s t o be  true among the 8 women they i n t e r v i e w e d about undergoing b r e a s t reconstruction.  A l l o f these women r e v e a l e d a d i f f e r e n t s t y l e o f  decision-making. Weighing t h e Consequences The mechanics o f weighing consequences i n decision-making are d e s c r i b e d i n p r o f e s s i o n a l l i t e r a t u r e .  This l i t e r a t u r e  s p e c i f i c a l l y u t i l i z e s a r a t i o n a l model o f decision-making.  This  model was e x p l o r e d i n the l i t e r a t u r e review under P s y c h o l o g i c a l D e c i s i o n Theory and "assumes t h a t i n d i v i d u a l s p e r c e i v e o p t i o n s , assign values t o these v a r i o u s o p t i o n s , choose one o p t i o n as p r e f e r a b l e t o another, and then a c t t o implement t h a t c h o i c e i n behavioral terms" (Luker, 1975, p. 78).  The above theory appears  to have more p r a c t i c a l r e l e v a n c e f o r the f i n d i n g s o f t h i s study than the cumbersome model o f v i g i l a n t decision-making.  However,  both these models o f decision-making share the view t h a t a thorough a n a l y s i s o f a l t e r n a t i v e s i s deemed necessary i n order t o e f f e c t the best d e c i s i o n . T h i s process was more e a s i l y observed  185 in those women who were able t o a r t i c u l a t e a method o f weighing consequences.  I t i s h e l p f u l t o speculate t h a t other women i n  t h i s study l i k e l y weighed a v a i l a b l e consequences as w e l l , but d i d so u n c o n s c i o u s l y , i n an i n t u i t i v e manner. Although the f o l l o w i n g theory i s aimed a t teaching  effective  decision-making t o nurses i n c l i n i c a l s i t u a t i o n s , i t can be a p p l i e d t o decision-making i n breast r e c o n s t r u c t i o n .  Ford,  Trygstad-Durland, and Nelms (1979) s t a t e t h a t there a r e three major c r i t e r i a f o r a n a l y z i n g a l t e r n a t i v e s o l u t i o n s . d e s i r a b i l i t y , p r o b a b i l i t y , and personal These authors e x p l a i n  "These a r e  r i s k t a k i n g " (p. 8 5 ) .  that  d e s i r a b i l i t y , which has i t s o r i g i n s i n u t i l i t y theory, i s the c r i t e r i o n t h a t measures the i n d i v i d u a l ' s p r e f e r e n c e f o r an a l t e r n a t i v e .  S u b j e c t i v e p r o b a b i l i t y i s the r a t i n g t h a t  the i n d i v i d u a l places on the l i k e l i h o o d t h a t the a l t e r n a t i v e w i l l be s u c c e s s f u l .  Risk r e p r e s e n t s an i n d i v i d u a l ' s  a n a l y s i s o f the a l t e r n a t i v e s i n terms o f hazards versus b e n e f i t s o f a p a r t i c u l a r problem s i t u a t i o n (p. 9 2 ) . The authors contend t h a t these c r i t e r i a a r e then ranked numerically  i n terms o f a v a i l a b l e a l t e r n a t i v e s i n order t o assign  a p r i o r i t y i n r e l a t i o n t o t h e i r comparison with each other. Generally,  the a l t e r n a t i v e r e p r e s e n t i n g  the highest l e v e l o f  d e s i r a b i l i t y with the g r e a t e s t p r o b a b i l i t y and lowest amount o f r i s k i s s e l e c t e d as the best  decision.  In the f i n d i n g s , a l l t h e women were able t o r e f e r i n some  186 way t o these three important elements o f decision-making. In keeping with t h e i r unique decision-making s t y l e , a l l p a r t i c i p a n t s p e r c e i v e d these elements d i f f e r e n t l y .  F o r those women who  desired reconstruction, the d e s i r a b i l i t y of breast reconstruction was always judged t o be t h e most important a l t e r n a t i v e w h i l e the r i s k s were minimized.  Conversely, t h e women who r e f u s e d b r e a s t  r e c o n s t r u c t i o n c o n s i s t e n t l y ranked r i s k as t h e most important c r i t e r i o n i n t h e i r decision-making, thereby making d e s i r a b i l i t y the lowest ranking element.  The women who underwent  r e c o n s t r u c t i o n ranked p r o b a b i l i t y o f s u c c e s s f u l outcome as high p r i o r i t y because they f e l t t h a t t h e surgery would s u c c e s s f u l l y achieve t h e i r d e s i r e d g o a l . On t h e other hand, those women who r e j e c t e d the idea o f surgery f e l t s t r o n g l y t h a t b r e a s t r e c o n s t r u c t i o n would n o t be h e l p f u l o r s u c c e s s f u l f o r them. The a p p l i c a b i l i t y o f Ford e t a l . ' s (1979) t h e o r e t i c a l concepts regarding the assessment o f a l t e r n a t i v e s a r e c l e a r l y r e l e v a n t t o the f i n d i n g s o f t h i s study.  These concepts a s s i s t i n  i n t e r p r e t i n g the women's decision-making behavior i n a meaningful way. Summary This chapter d i s c u s s e d t h e f i n d i n g s o f t h i s study i n r e l a t i o n t o the c u r r e n t l i t e r a t u r e .  The major f i n d i n g i n v o l v e d  the women's general l a c k o f adherence t o the t r a d i t i o n a l model o f v i g i l a n t decision-making.  The r o l e o f i n t u i t i v e t h i n k i n g was  found t o be r e l e v a n t t o the women's decision-making r e g a r d i n g  187 breast r e c o n s t r u c t i o n . decision-making  The v a r i a b i l i t y o f each woman's  process was emphasized.  A d d i t i o n a l key f i n d i n g s  i n v o l v e d the importance o f wholeness i n the women's d e c i s i o n t o consider b r e a s t r e c o n s t r u c t i o n and the s i g n i f i c a n c e o f the d o c t o r - p a t i e n t r e l a t i o n s h i p t o those women who underwent reconstruction. i n t o understanding  The present study o f f e r e d a d d i t i o n a l i n s i g h t the complexity  o f the decision-making  in women who c o n s i d e r b r e a s t r e c o n s t r u c t i o n .  process  Chapter S i x  presents c o n c l u s i o n s from t h e f i n d i n g s and d i s c u s s e s the r e l a t e d i m p l i c a t i o n s f o r nursing p r a c t i c e , education, and r e s e a r c h .  188 CHAPTER SIX Sumary, Conclusions, and Implications for Nursing  Summary o f the Study This study was implemented to describe and explore women's decision-making process i n choosing or r e f u s i n g breast reconstruction.  Current s c i e n t i f i c evidence c l e a r l y reveals that  breast r e c o n s t r u c t i o n i s a reasonably safe and e f f e c t i v e a l t e r n a t i v e to an external p r o s t h e s i s f o r post-mastectomy women. Because of recent advances i n s u r g i c a l techniques, t h i s surgery is i n c r e a s i n g l y a v a i l a b l e as a treatment option. However, e x i s t i n g knowledge regarding p e r t i n e n t f a c t o r s that influence a woman's breast r e c o n s t r u c t i o n decision-making i s extremely l i m i t e d . The l i t e r a t u r e r e f l e c t s minimal nursing research on the subject of breast r e c o n s t r u c t i o n . The majority of nursing research continues to focus on mastectomy and on the technical aspects o f r e c o n s t r u c t i v e surgery, n e g l e c t i n g to deal with the a s s o c i a t e d psychological concerns o f breast reconstruction.  This i n s u f f i c i e n t theory base l i k e l y r e s u l t s i n  nursing care that stops short o f meeting the needs o f t h i s patient population. The phenomenological  approach was s e l e c t e d t o guide t h i s  study because o f i t s focus on examining p a r t i c i p a n t s ' experience from t h e i r unique p e r s p e c t i v e .  This methodology r e l i e s on  p a r t i c i p a n t accounts which r e f l e c t the meaningful informants and researcher.  interaction of  The richness o f the data i s enhanced  189 by the simultaneous methodological  data c o l l e c t i o n and a n a l y s i s processes.  This  approach enabled the researcher to explore how  women decide whether or not to have breast r e c o n s t r u c t i o n . In a d d i t i o n , the phenomenological perspective was c o n s i s t e n t with nursing's focus on the value o f the i n d i v i d u a l and his o r her need f o r q u a l i t y care. The l i t e r a t u r e on body image, mastectomy, and breast reconstruction was reviewed f o r the purpose o f enabling the researcher to i d e n t i f y p e r t i n e n t issues that might have relevance for post-mastectomy women. S p e c i f i c f a c t o r s a l l e g e d to i n f l u e n c e the breast r e c o n s t r u c t i o n d e c i s i o n were examined. The l i t e r a t u r e review substantiated the need f o r a d d i t i o n a l sound research i n the t o p i c area.  L i t e r a t u r e r e l a t e d to decision-making was  explored to a s c e r t a i n i f i t would be h e l p f u l i n i n t e r p r e t i n g and understanding women's decisions about breast r e c o n s t r u c t i o n . The data were c o l l e c t e d through a s e r i e s o f semi-structured interviews with 16 women over a four-month period. A l l interviews were audiotaped and then subsequently verbatim.  transcribed  The concurrent data c o l l e c t i o n and a n a l y s i s ensured  v a l i d a t i o n o f emerging themes from the p a r t i c i p a n t accounts. These themes were examined f o r s i m i l a r i t i e s and d i f f e r e n c e s and then c l u s t e r e d to form major concepts.  These concepts were  instrumental i n condensing the data and c l a r i f y i n g i t s o v e r a l l meaning i n terms o f the breast reconstruction process.  decision-making  190  P a r t i c i p a n t s began t h e i r accounts by t e l l i n g t h e i r cancer-mastectomy s t o r i e s and how they made sense out o f t h i s experience i n terms o f t h e i r own l i v e s .  The women d e s c r i b e d  t h e i r experiences i n l i g h t o f the f a c t o r s t h a t i n f l u e n c e d t h e i r d e c i s i o n t o choose o r r e f u s e b r e a s t r e c o n s t r u c t i o n .  The most  pervasive o v e r a l l theme was wholeness which was manifested i n the subthemes o f l o s s o f wholeness, search f o r wholeness, and r e g a i n i n g o f wholeness.  In t h i s study, most women who chose  breast r e c o n s t r u c t i o n f e l t l e s s whole than those women who refused r e c o n s t r u c t i o n .  T h i s lack o f wholeness was evidenced i n  decreased s e l f - e s t e e m and a perceived lack o f normalcy. A l l women who underwent b r e a s t r e c o n s t r u c t i o n expressed  negative  f e e l i n g s about t h e i r prostheses i n terms o f d i s c o m f o r t , i t s lack of convenience,  and i t s i n a b i l i t y t o r e s t o r e f e e l i n g s o f  wholeness to them. This l o s s o f wholeness acted as a c a t a l y s t t h a t began the search f o r wholeness.  A c q u i r i n g information was a c r i t i c a l  component o f t h i s search.  Some p a r t i c i p a n t s were informed o f  breast r e c o n s t r u c t i o n by h e a l t h p r o f e s s i o n a l s .  Others a c t i v e l y  sought and obtained t h i s information from a v a r i e t y o f sources. The r e g a i n i n g o f wholeness was an e x c e p t i o n a l l y powerful event f o r the women who underwent b r e a s t r e c o n s t r u c t i o n .  They  were amazed a t how q u i c k l y t h e i r sense o f normalcy and s e l f - c o n c e p t were r e s t o r e d .  One o f the major b e n e f i t s was the  new-found a b i l i t y t o put the cancer experience behind them now  191  that they were not c o n s t a n t l y reminded o f t h e i r b r e a s t l o s s . Although a l l p a r t i c i p a n t s d e s c r i b e d s i m i l a r f e e l i n g s about wholeness versus non-wholeness, t h e i r i n t e r p r e t a t i o n o f information r e f l e c t e d t h e i r personal b e l i e f s about the value o f breast r e c o n s t r u c t i o n .  T h e r e f o r e , a key theme t h a t emerged was  the unique decision-making account.  s t y l e t h a t c h a r a c t e r i z e d each woman's  One o f the most s t r i k i n g components was the v a r i a t i o n  in the length o f time i t took each woman t o make her d e c i s i o n . Weighing o f consequences was an important p a r t o f the decision-making  process and i n v o l v e d f o c u s i n g on the b e n e f i t s  versus the r i s k s o f r e c o n s t r u c t i o n . For those women who chose r e c o n s t r u c t i o n , another major theme was the powerful relationship.  nature o f the d o c t o r - p a t i e n t  The p l a s t i c surgeon was f r e q u e n t l y endowed with  magical, g o d - l i k e powers and t h i s , i n t u r n , i n s p i r e d the women's confidence to such an extent t h a t i t appeared t o d i m i n i s h f e a r o f r i s k s i n v o l v e d i n r e c o n s t r u c t i v e surgery.  The women who r e f u s e d  r e c o n s t r u c t i o n d i d not endow t h e p h y s i c i a n with such power and were unable t o minimize these r i s k s . In f a c t , they f e l t t h a t the r i s k s a s s o c i a t e d with surgery outweighed any b e n e f i t s o f f e r e d by breast r e c o n s t r u c t i o n . F i n a l l y , d e s p i t e the type o f choice made, every p a r t i c i p a n t defended her d e c i s i o n as the r i g h t one f o r her. In a d d i t i o n t o examining the f i n d i n g s o f t h i s study i n terms of the c u r r e n t l i t e r a t u r e on body image, breast r e c o n s t r u c t i o n ,  192 and decision-making, women's l i t e r a t u r e d e a l i n g with mastectomy, breast r e c o n s t r u c t i o n , and decision-making was explored t o e n r i c h the r e s e a r c h e r ' s understanding o f these i s s u e s from a f e m i n i s t perspective.  T h i s proved to be a r e l e v a n t p e r s p e c t i v e because  the mainstream s c i e n t i f i c l i t e r a t u r e on decision-making, f o c u s i n g as i t does on a male model o f l o g i c a l , r a t i o n a l  decision-making,  proved to be i n a p p l i c a b l e to the process o f the women's decision-making i n b r e a s t r e c o n s t r u c t i o n . C l e a r l y , i t i s important to understand the d i v e r g e n t p e r s p e c t i v e s represented by these two sources i n terms o f women's needs i n b r e a s t reconstruction  decision-making. Conclusions  The f i n d i n g s can be summarized by the f o l l o w i n g statements: 1.  Each woman i n t h i s study demonstrated  a unique  decision-making s t y l e when making a decison about b r e a s t reconstruction. 2.  I n t u i t i v e t h i n k i n g was a prominent c h a r a c t e r i s t i c o f  the breast r e c o n s t r u c t i o n decision-making experience f o r the women. 3.  Information about b r e a s t r e c o n s t r u c t i o n acted as a  c a t a l y s t f o r i n i t i a t i n g the process o f b r e a s t r e c o n s t r u c t i o n decision-making. 4.  A f e e l i n g o f non-wholeness was the most powerful and  i n f l u e n t i a l f a c t o r f o r the women choosing to undergo b r e a s t reconstruction.  193 5.  Among the women who chose breast r e c o n s t r u c t i o n , the  p r o s t h e s i s was s t r o n g l y c r i t i c i z e d i n terms o f i t s i n a b i l i t y t o r e s t o r e wholeness. 6.  The women who r e f u s e d b r e a s t r e c o n s t r u c t i o n f e l t more  whole a f t e r mastectomy than d i d those who chose t o undergo reconstruction. 7.  The women who underwent r e c o n s t r u c t i o n minimized the  s u r g i c a l r i s k s o f b r e a s t r e c o n s t r u c t i o n and f r e q u e n t l y endowed the p l a s t i c surgeon with magical, g o d - l i k e powers. 8.  The women who refused b r e a s t r e c o n s t r u c t i o n p e r c e i v e d  the r i s k s o f any surgery as a d e c i s i v e f a c t o r i n t h e i r r e j e c t i o n of t h i s o p t i o n . 9.  The women who underwent b r e a s t r e c o n s t r u c t i o n  experienced the need t o defend t h e i r d e c i s i o n . I m p l i c a t i o n s f o r Nursing P r a c t i c e The f i n d i n g s o f t h i s study suggest a number o f s p e c i f i c i m p l i c a t i o n s f o r nurses who provide care t o post-mastectomy patients.  These i m p l i c a t i o n s a r e p e r t i n e n t throughout a l l phases  of the nursing process and r e f l e c t the needs o f c l i e n t s making a choice about r e c o n s t r u c t i o n . As nurses, i t i s c r i t i c a l t o be aware t h a t every post-mastectomy woman may be i n v o l v e d i n the b r e a s t r e c o n s t r u c t i o n decision-making  process a t any p o i n t f o l l o w i n g her  surgery. This study d i r e c t s nurses to understand  the inherent  194  d i f f e r e n c e s between a l o g i c a l versus an i n t u i t i v e s t y l e o f decision-making needs.  i n order to be more s e n s i t i v e to a p a t i e n t ' s  Given t h a t each woman has a unique decision-making  i t i s important  to thoroughly  style,  assess t h i s d e c i s i o n process i n  r e l a t i o n to past h e a l t h - r e l a t e d i s s u e s . The nurse can be i n v a l u a b l e i n f a c i l i t a t i n g a woman's decision-making  process and i n being supportive and h e l p f u l as  the p a t i e n t c l a r i f i e s what she needs from health p r o f e s s i o n a l s . In a d d i t i o n , the d e c i s i o n - s t y l e manifested  i n the woman's  approach to the breast r e c o n s t r u c t i o n d e c i s i o n needs t o be examined.  This assessment would address such questions a s : Does  a woman tend to use a l o g i c a l , systematic d e c i s i o n s t y l e ? she favour more o f an i n t u i t i v e approach?  Does  Or does she i n t e g r a t e  elements from both? Another i m p l i c a t i o n i n v o l v e s the c r i t i c a l r o l e t h a t information plays i n i n i t i a t i n g a woman's c o n s i d e r a t i o n o f b r e a s t reconstruction.  Because o f t h e i r i n t e r a c t i o n with numerous  health p r o f e s s i o n a l s i n h o s p i t a l and c l i n i c s e t t i n g s , nurses can f u n c t i o n i n an e f f e c t i v e l i a i s o n c a p a c i t y t o dispense and c l a r i f y information about b r e a s t r e c o n s t r u c t i o n .  The f i n d i n g s o f t h i s  study d i r e c t nurses to give post-mastectomy women s p e c i f i c information r e l a t i n g to the s u r g i c a l procedures a v a i l a b l e f o r breast r e c o n s t r u c t i o n , the timing o f r e c o n s t r u c t i v e f o l l o w i n g mastectomy, p o s s i b l e complications  surgery  versus l i k e l y  b e n e f i t s , and c h a r a c t e r i s t i c s o f the p o s t - o p e r a t i v e  experience.  195 I t i s imperative t h a t women be informed about b r e a s t r e c o n s t r u c t i o n during the follow-up p e r i o d a f t e r t h e i r mastectomy, r e g a r d l e s s o f whether o r not they r e q u i r e treatment.  adjuvant  A woman who has been f u l l y informed i s l i k e l y t o f e e l  more i n c o n t r o l o f her l i f e .  This i s important, given the  f e e l i n g s o f l o s s o f c o n t r o l experienced by cancer p a t i e n t s . Nurses need t o be attuned t o the f a c t t h a t information about r e c o n s t r u c t i o n a c t s as a c a t a l y s t f o r some women, compelling them to pursue b r e a s t r e c o n s t r u c t i o n immediately.  As w e l l , they need  to know t h a t some women w i l l not respond i n i t i a l l y b u t w i l l l a t e r express i n t e r e s t , and other women w i l l never c o n s i d e r t h i s treatment option a t a l l .  Once women a r e made aware o f the option  of breast r e c o n s t r u c t i o n , i t should be s t r e s s e d t h a t i t i s t h e i r choice alone whether o r not t o seek o u t a p l a s t i c surgeon. It i s the nurse's r e s p o n s i b i l i t y t o ask p a t i e n t s what they know about b r e a s t r e c o n s t r u c t i o n and explore t h e i r p r i o r sources of i n f o r m a t i o n .  The nurse can then modify her e x p l a n a t i o n o f  breast r e c o n s t r u c t i o n t o best meet the unique needs o f each patient. Even though many turn down t h e o p t i o n o f b r e a s t r e c o n s t r u c t i o n , i t i s important f o r a woman t o be given the f a c t s about a v a i l a b l e a l t e r n a t i v e s and assured o f a nurse's a v a i l a b i l i t y for future discussion of breast reconstruction i f the p a t i e n t so d e s i r e s .  Snyder (1984) suggests t h a t nurses would  enhance the e f f e c t i v e n e s s o f t h e i r i n f o r m a t i o n - g i v i n g r o l e i f  196 they were to o f f e r follow-up support to those patients who l a t e r undergo r e c o n s t r u c t i v e surgery. The process of t e l l i n g a woman about the a l t e r n a t i v e o f breast reconstruction serves to convey the message that health p r o f e s s i o n a l s would support any d e c i s i o n the woman chooses to make. Berger and Bostwick (1984) agree, s t a t i n g that "equipped with t h i s information, women, we hope, w i l l be able to more e f f e c t i v e l y i n f l u e n c e t h e i r own d e s t i n i e s and play an a c t i v e r o l e in t h e i r own health care" (p. 2 ) . Given that a woman's perception o f her wholeness i s a valuable i n d i c a t o r o f how she may adjust to wearing a prosthesis and consequently  respond to the idea of breast r e c o n s t r u c t i o n ,  another i m p l i c a t i o n involves understanding each woman's sense o f her wholeness. The concept of wholeness appears to be r e f l e c t e d through the i n t e r r e l a t e d concepts o f body-image, s e l f - c o n c e p t , and s e x u a l i t y . Therefore, these three t o p i c areas must be explored i n the nurse's assessment o f a p a t i e n t ' s perception o f her wholeness.  Such coping s t r a t e g i e s as avoiding looking a t  oneself i n the mirror when undressed, continued  apprehension  regarding sexual intimacy, and a large degree o f self-consciousness while wearing a prosthesis should a l e r t nurses to f a c t o r s which may s i g n i f y a p a t i e n t ' s lack o f wholeness. The a b i l i t y to c a r r y out a non-threatening  assessment o f a  woman's f e e l i n g s about the intimate subjects of body-image,  197  s e l f - c o n c e p t , and s e x u a l i t y r e q u i r e s a great deal o f s e n s i t i v i t y on the p a r t o f the nurse.  I t i s imperative t h a t such an  assessment i s done with empathy and r e s p e c t f o r the c l i e n t .  With  p a t i e n t s who do not i n i t i a t e d i s c u s s i o n o f t h e i r f e a r s and concerns, the nurse may need t o take the l e a d i n f a c i l i t a t i n g such a d i s c u s s i o n .  Nurses need to have worked through t h e i r own  f e e l i n g s about t h e i r own body image and s e x u a l i t y i n order t o feel comfortable when e x p l o r i n g these t o p i c s with t h e i r c l i e n t s . The tendency o f the women who underwent r e c o n s t r u c t i o n t o c r i t i c i z e the inadequacy o f a p r o s t h e s i s i n terms o f i t s i n a b i l i t y to r e s t o r e wholeness supports the need to understand how each women's p r o s t h e s i s experience a f f e c t s her sense o f wholeness.  This understanding  can be reached by e x p l o r i n g the  c l i e n t ' s f e e l i n g s regarding her p r o s t h e s i s .  The importance o f a  woman's experience with her p r o s t h e s i s cannot be  underestimated  in terms o f her d e c i s i o n to choose o r r e f u s e r e c o n s t r u c t i o n . Women who continue t o lack wholeness i n s p i t e o f the p r o s t h e s i s r e q u i r e a d d i t i o n a l support from nurses because o f s o c i e t y ' s predominant b e l i e f t h a t an external p r o s t h e s i s i s a l l t h a t i s r e q u i r e d f o r long-term  adjustment.  The f o l l o w i n g i m p l i c a t i o n deals with those women who underwent r e c o n s t r u c t i o n and minimized the s u r g i c a l r i s k s while a t t r i b u t i n g g o d - l i k e powers t o t h e i r p l a s t i c surgeon.  Although  i t i s important t h a t these p a t i e n t s be r e a l i s t i c a l l y informed o f the f a c t s about b r e a s t r e c o n s t r u c t i o n , i t i s imperative f o r  198 nurses to both accept and support t h e i r need f o r downplaying r i s k s and e l e v a t i n g the surgeon's powers. Given the recognized importance o f the d o c t o r - p a t i e n t r e l a t i o n s h i p , i t i s c r i t i c a l t h a t nurses communicate t o p a t i e n t s t h e i r r i g h t t o competent, s e n s i t i v e medical c a r e .  Nurses can  give support t o b r e a s t r e c o n s t r u c t i o n candidates by a s s i s t i n g them i n l o c a t i n g p l a s t i c surgeons, while emphasizing t h e importance o f e s t a b l i s h i n g rapport with the surgeon, and o f seeking several c o n s u l t a t i o n s i f necessary. This process c o u l d be f a c i l i t a t e d , as Winder and Winder (1985) suggest, by h e l p i n g women t o compile r e l e v a n t questions f o r the p l a s t i c surgeon.  By a c t i v e l y t a k i n g p a r t i n the  c o n s u l t a t i o n process, women a r e l e s s l i k e l y t o assume the t r a d i t i o n a l submissive r o l e and a more meaningful,  constructive  d o c t o r - p a t i e n t r e l a t i o n s h i p can be e s t a b l i s h e d . F i n a l l y , because women who underwent r e c o n s t r u c t i o n were compelled  t o defend t h e i r d e c i s i o n t o s i g n i f i c a n t o t h e r s , the  i s s u e o f negative a t t i t u d e s towards b r e a s t r e c o n s t r u c t i o n should be explored i n a s u p p o r t i v e manner with these p a t i e n t s ( P f e i f f e r & M u l l i k e n , 1984; Winder & Winder, 1985). The c o n c l u s i o n s o f t h i s study present g u i d e l i n e s f o r a s p e c i f i c nursing r o l e which should f a c i l i t a t e b e t t e r understanding  and meeting o f the needs o f post-mastectomy women  who c o n s i d e r b r e a s t r e c o n s t r u c t i o n .  199 I m p l i c a t i o n s f o r Nursing The importance  Education  o f educating nurses to understand the needs  of post-mastectomy women who c o n s i d e r b r e a s t r e c o n s t r u c t i o n i s obvious.  Nursing education should s t r e s s the value o f p e r c e i v i n g  each woman's experience as unique and meeting her needs.  This  w i l l help students a v o i d making assumptions and g e n e r a l i z a t i o n s that w i l l compromise the q u a l i t y o f t h e i r n u r s i n g c a r e . A major need e x i s t s f o r course m a t e r i a l to i n c l u d e information on general p a t i e n t decision-making health-care issues.  i n r e l a t i o n to  Since the f i n d i n g s support t h a t i t i s an  i n t e g r a l p a r t o f the b r e a s t r e c o n s t r u c t i o n d e c i s i o n , i t would be h i g h l y r e l e v a n t f o r n u r s i n g education, f o r example, t o address the t o p i c o f i n t u i t i o n and i t s e f f e c t on decision-making. In a d d i t i o n , the v i t a l r o l e t h a t i n f o r m a t i o n plays should be examined.  The s i g n i f i c a n c e o f the nurse's r o l e i n d i s p e n s i n g  information to b r e a s t r e c o n s t r u c t i o n p a t i e n t s should be emphasized. The importance o f post-mastectomy women being able t o make an informed c h o i c e about b r e a s t r e c o n s t r u c t i o n cannot be s t r e s s e d enough i n n u r s i n g education and i s best summed up by Harvey (1980) who c i t e s G r a n d s t a f f as s t a t i n g t h a t "an informed d e c i s i o n i s the best d e c i s i o n , r e g a r d l e s s o f what your options are" (p. 102). The c o n c l u s i o n s o f t h i s study a l s o d i r e c t n u r s i n g educators to provide theory p e r t a i n i n g to the t o p i c o f wholeness and  200 non-wholeness.  Such content should be explored using  contemporary l i t e r a t u r e on women's h e a l t h i s s u e s . Nursing c u r r i c u l a should focus not only on the t e c h n i c a l procedure o f b r e a s t r e c o n s t r u c t i o n with i t s i n h e r e n t r i s k s , but a l s o the p s y c h o l o g i c a l f a c t o r s which i n f l u e n c e a woman's d e c i s i o n to choose o r r e f u s e r e c o n s t r u c t i o n . A p o s i t i v e a t t i t u d e toward these women should be encouraged by educators, given t h a t the m a j o r i t y o f women who choose b r e a s t r e c o n s t r u c t i o n a r e " r e a l i s t i c in t h e i r e x p e c t a t i o n s , h i g h l y motivated, p s y c h o l o g i c a l l y w e l l - a d j u s t e d and high f u n c t i o n i n g , much l i k e t h e i r non-reconstructed peers" (Rowland, 1984, p. 9 ) . T h i s would help to d i s p e l the p r e v a l e n t b i a s which sees women who request b r e a s t r e c o n s t r u c t i o n as maladjusted i n some way and t o ensure t h a t nurses a r e attuned t o the r e a l needs o f t h i s p a t i e n t p o p u l a t i o n . According t o the l i t e r a t u r e and the f i n d i n g s o f t h i s study, nurses f r e q u e n t l y do not take advantage o f t h e i r unique o p p o r t u n i t i e s t o t a l k t o post-mastectomy women. As a r e s u l t , c r i t i c a l i s s u e s such as a l t e r a t i o n i n body image and s e l f - c o n c e p t , adjustment, provision of nursing care.  and s e x u a l i t y a r e neglected during the Such avoidance behavior on the p a r t  of nurses i s l i k e l y t o be construed as non-supportive by these women. C e r t a i n l y , there i s a c l e a r mandate f o r nurse  educators  to support the use o f r i g o r o u s p s y c h o s o c i a l assessment when working with post-mastectomy p a t i e n t s . C a r r o l l (1981) claims that i f such assessments were u t i l i z e d over a follow-up p e r i o d o f  201 at l e a s t several months, nurses would be a l e r t e d t o the 20% o f women who experience adjustment  problems f o l l o w i n g mastectomy.  Thus, nursing education can play an instrumental r o l e i n improving n u r s i n g care f o r post-mastectomy women i n v o l v e d i n breast r e c o n s t r u c t i o n  decision-making.  I m p l i c a t i o n s f o r Nursing  Research  The f i n d i n g s o f t h i s study suggest several areas f o r additional research. More i n f o r m a t i o n i s needed about f a c t o r s t h a t i n f l u e n c e women t o choose o r r e f u s e b r e a s t r e c o n s t r u c t i o n , t o expand on the f i n d i n g s o f t h i s e x p l o r a t o r y study.  Future s t u d i e s should  i n v o l v e g r e a t e r numbers o f p a r t i c i p a n t s f o r the purpose o f e l i c i t i n g a wider range o f experiences which w i l l enhance the r i c h n e s s and g e n e r a l i z a b i l i t y o f the f i n d i n g s .  Carroll-Johnson  (1982) addresses the importance o f research i n t h i s area by stating: the r o l e o f the nurse and other h e a l t h - p r o f e s s i o n a l s i n f a c i l i t a t i n g decision-making  f o r the i n d i v i d u a l woman w i l l  be dependent upon f u r t h e r c l a r i f i c a t i o n o f the f a c t o r s r e l a t e d t o adjustment  t o the l o s s o f a b r e a s t and the r o l e  of b r e a s t r e c o n s t r u c t i o n i n a mastectomy p a t i e n t ' s p h y s i c a l and emotional  r e h a b i l i t a t i o n (p. 73, unpublished).  Secondly, as C a r r o l l - J o h n s o n (1982) c l a i m s , a d d i t i o n a l research i s needed t o develop more r e l e v a n t , a c c u r a t e , and d i s c r i m i n a t i n g t o o l s f o r measuring body image.  Since body image  202 a l t e r a t i o n through mastectomy i s a key f a c t o r i n women f e e l i n g non-whole, such t o o l s would be u s e f u l f o r e v a l u a t i n g women's perception o f t h e i r  wholeness.  Because t h i s study deals only with women who sought c o n s u l t a t i o n with a p l a s t i c surgeon, i t would be i n v a l u a b l e t o i n v e s t i g a t e a group o f women who decided t o r e f u s e the o p t i o n o f breast r e c o n s t r u c t i o n without having c o n s u l t e d with a p l a s t i c surgeon.  How would t h i s group o f p a r t i c i p a n t s compare with women  who undergo r e c o n s t r u c t i o n i n terms o f t h e i r p e r c e p t i o n o f t h e i r own wholeness?  According t o t h e l i t e r a t u r e f i n d i n g s , t h i s group  of women would be very important t o study i n view o f the r e l a t i v e l y l i m i t e d number o f women who a c t u a l l y undergo reconstruction. The i s s u e o f the p r o s t h e s i s experience c a l l s f o r examination of t h i s w i t h i n the o v e r a l l c o n t e x t o f wholeness.  I t would be  useful t o conduct research i n t o the f a c t o r s t h a t determine whether post-mastectomy women p e r c e i v e t h e i r p r o s t h e s i s as an asset o r a detriment i n r e g a i n i n g wholeness.  Knowing t h e process  that l e a d s women t o accept t h e i r p r o s t h e s i s would a s s i s t nurses in f a c i l i t a t i n g adjustment f o r those who experience d i f f i c u l t y . The f i n d i n g s o f t h i s study support the need f o r continued i n v e s t i g a t i o n i n t o the dynamics o f the decision-making process i n women who c o n s i d e r b r e a s t r e c o n s t r u c t i o n . Nursing r e s e a r c h i s needed t o help c l a r i f y and c o n c e p t u a l i z e t h i s v i t a l  thought  process so t h a t decision-making, e s p e c i a l l y i n t u i t i v e  203 decision-making,  can be b e t t e r understood.  Although the whole  concept o f i n t u i t i o n may not be amenable t o s c i e n t i f i c s c r u t i n y , i t would be worthwhile t o i n s t i g a t e research i n t h i s area i n order to v a l i d a t e the i n t u i t i v e process f o r both nurses and patients. In view o f the f a c t t h a t t h i s study and the m a j o r i t y o f s t u d i e s reported i n the l i t e r a t u r e a r e r e t r o s p e c t i v e i n nature, i t would be u s e f u l t o study women who a r e c u r r e n t l y i n the process o f d e c i d i n g about r e c o n s t r u c t i o n . L a s t l y , there i s a need f o r f u r t h e r study o f the importance of information i n r e l a t i o n t o the decision-making  process.  c a t a l y t i c r o l e t h a t i n f o r m a t i o n plays i n decision-making i n v e s t i g a t i o n t o e s t a b l i s h a c l e a r e r understanding  The requires  o f how i t  i n f l u e n c e s women d i f f e r e n t l y . 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I am whole a g a i n : The case f o r b r e a s t r e c o n s t r u c t i o n a f t e r mastectomy. New York: Random House.  214  APPENDIX "A" Information and Consent Form My name i s Anne Claydon.  I am a r e g i s t e r e d nurse p r e s e n t l y  e n r o l l e d i n the graduate n u r s i n g program a t the U n i v e r s i t y of B r i t i s h Columbia.  I am i n t e r e s t e d i n l e a r n i n g how nurses can  help women who have had mastectomies and are c o n s i d e r i n g b r e a s t reconstruction.  I f you agree to p a r t i c i p a t e i n t h i s study, I  w i l l arrange f o r an i n t e r v i e w a t your convenience i n your home. The questions I w i l l ask w i l l be r e l a t e d to such t o p i c s as where you f i r s t l e a r n e d about b r e a s t r e c o n s t r u c t i o n , what you saw as the disadvantages and advantages i n b r e a s t r e c o n s t r u c t i o n and what f a c t o r s caused you to undertake or r e f u s e b r e a s t reconstruction.  I would welcome any ideas of how t h i s d e c i s i o n  has a f f e c t e d your l i f e . I would l i k e to i n t e r v i e w you twice. Both i n t e r v i e w s would be tape recorded, but every e f f o r t w i l l be made to a v o i d the use of i d e n t i f y i n g names on the tape.  You may r e f u s e to answer any  question d u r i n g the i n t e r v i e w . The tape w i l l be kept c o n f i d e n t i a l with the e x c e p t i o n of myself and my t h e s i s advisors.  Excerpts of the i n t e r v i e w may be i n c l u d e d i n w r i t t e n  reports of my study but no names w i l l be used. erased when my t h e s i s i s completed.  The tapes w i l l be  The purpose of r e c o r d i n g the  i n t e r v i e w s i s to enable me to c a r e f u l l y examine your ideas and concerns and to compare them with the ideas of other participants.  216 APPENDIX "B" Sample Questions f o r I n i t i a l Interview  1.  What prompted you to seek c o n s u l t a t i o n with a p l a s t i c surgeon about b r e a s t r e c o n s t r u c t i o n ?  2.  What f a c t o r s about b r e a s t r e c o n s t r u c t i o n i n f l u e n c e d your d e c i s i o n to have r e c o n s t r u c t i o n ?  3.  What f a c t o r s about b r e a s t r e c o n s t r u c t i o n i n f l u e n c e d y o u r d e c i s i o n to refuse r e c o n s t r u c t i o n ?  

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