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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 of 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 re q u i r e d standard THE UNIVERSITY OF BRITISH COLUMBIA February 1986 © Anne E. Claydon, 1986 In p r e s e n t i n g t h i s t h e s i s i n p a r t i a l f u l f i l m e n t o f the requirements f o r an advanced degree a t the U n i v e r s i t y of B r i t i s h Columbia, I agree t h a t the L i b r a r y s h a l l make i t f r e e l y a v a i l a b l e f o r r e f e r e n c e and study. I f u r t h e r agree t h a t p e r m i s s i o n f o r e x t e n s i v e copying o f t h i s t h e s i s f o r s c h o l a r l y purposes may be granted by the head of my department or by h i s or her r e p r e s e n t a t i v e s . I t i s understood t h a t copying or p u b l i c a t i o n o f t h i s t h e s i s f o r f i n a n c i a l g a i n s h a l l not be allowed without my w r i t t e n p e r m i s s i o n . Department of NURSING  The U n i v e r s i t y of B r i t i s h Columbia 1956 M a i n M a l l Vancouver, Canada V6T 1Y3 Date A p r i l 21, 1986 DE-6 (3/81) 11 Abstract This study was designed to explore post-mastectomy women's decision-making experience in r e l a t i o n to t h e i r choosing or refu 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 of knowledge about the f a c t o r s that influence breast reconstruction 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 of 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 reconstruction and 3 refused t h i s option. The women ranged in age from 32 to 64 years. 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 of the women had c h i l d r e n . Decision-making in these women was ch 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 to a l o g i c a l , systematically-sequenced decision 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 of decision-making. The i m p l i c a t i o n s of t h i s study focus on the c r i t i c a l need of post-mastectomy women to be thoroughly assessed, given relevant breast reconstruction 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 at educating i i i 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 breast 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 the decision-making process i t s e l f . Nursing research can play a valuable 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 information 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, and the s i g n i f i c a n c e of i n t u i t i v e decision-making 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 i v Table of Contents Page Ab s t r a c t . . . . . . i i Table of Contents i v Acknowledgements . v i CHAPTER ONE - Introduction Background to the Problem 1 Statement of the Problem and Purpose 6 D e f i n i t i o n of Terms 7 Introduction to t h i s Study's Methodology 8 Assumptions 11 Li m i t a t i o n s . . . . . . 12 Summary 12 CHAPTER TWO - Review of the Literature Body Image Theory 14 Body Image and S e x u a l i t y 18 Self-Concept 22 Impact of P r o s t h e s i s on Body Image 26 Chronological Developments in Breast Reconstruction ... 30 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 33 Timing 34 Issues in Breast Reconstruction 36 Factors Involved i n Decision-Making 38 Breast Reconstruction Research 42 Decision Theory 55 Behavioral Decision Theory 58 Psych o l o g i c a l D e cision Theory 59 Role of Information in Decision-Making 63 Pati e n t Decision-Making Research 67 Summary . . 71 CHAPTER THREE - Methodology Introduction 73 Se l e c t i o n of P a r t i c i p a n t s 73 C r i t e r i a f o r S e l e c t i o n 74 Se l e c t i o n Procedure 74 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 75 Data C o l l e c t i o n 76 Const r u c t i o n of Accounts 78 Data A n a l y s i s 79 Et h i c a l C onsiderations 80 Summary . . . 81 V Table of Contents, Cont'd CHAPTER FOUR - Presentation of Accounts I n t r o d u c t i o n 82 E s t a b l i s h i n g Context 83 Loss of Wholeness 89 Emotional Adjustment to Cancer and Mastectomy 90 Pros t h e s i s Experience 95 Search f o r Wholeness 100 E s t a b l i s h i n g Meaning 106 Acq u i r i n g Information 113 Weighing Consequences of Reconstruction 119 Perception of Surgery and Surgeon 127 Regaining Wholeness 134 Defending the Dec i s i o n 134 Recovering 142 Summary 148 CHAPTER FIVE - Discussion of the Findings Loss of Wholeness 151 Women Who Underwent Breast Reconstruction 151 Women Who Refused Breast Reconstruction 154 Search f o r Wholeness 155 Regaining Wholeness and Recovery 162 The Doct o r - P a t i e n t R e l a t i o n s h i p 164 E s t a b l i s h i n g Rapport 164 Creat i n g a Demi-God 170 The Decision-Making Process 175 Rational Versus I n t u i t i v e Decision-Making 178 Weighing the Consequences 184 Summary 186 CHAPTER SIX - Summary, Conclusions, and Implications For Nursing Summary of the Study 188 Conclusions 192 Implications f o r Nursing P r a c t i c e 193 Implications f o r Nursing Education 199 Implications f o r Nursing Research 201 Reference L i s t 204 Appendix A: Information and Consent Form 214 Appendix B: Sample Questions f o r I n i t i a l Interview . . . 216 v i Acknowledgements I wish to express my s i n c e r e a p p r e c i a t i o n to the supportive members of 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, unflagging 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 to persevere, and A l i s o n Rice f o r her w i l l i n g n e s s to take on t h i s p r o j e c t , her understanding and f r e s h p e r s p e c t i v e . I would a l s o l i k e to 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 the research process. A very s p e c i a l thanks goes to my husband Jim, who stood by me and held our fa m i l y together so I co u l d r e a l i z e my dream. I am g r a t e f u l to J e n n i f e r , my daughter, f o r g i v i n g me joy 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 appreciate the l o v i n g c o n t r i b u t i o n of Lucy, my deceased mother-in-law who gave so f r e e l y of her time and energy to do my typing i n the M.S.N, program. I am g r a t e f u l to 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 of a sound education. I am indebted to Dr. W. Graham and Dr. R. Thompson who supported t h i s endeavour and who gave me wise counsel, and to 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 to 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 to 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 of themselves to teach me about the importance of 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 to the Problem "Breast cancer i s the most common cancer i n women" (Bostwick, 1983, p. 272). According to S t a t i s t i c s Canada f i g u r e s , there were 17,016 cases of women admitted to h o s p i t a l with the d i a g n o s i s of breast cancer i n 1980 to 1981 ( S t a t i s t i c s Canada 82-206, 1984, p. 110). In 1983, 3,974 Canadian women died of breast cancer ( S t a t i s t i c s Canada 84-203, 1985, p. 26). The di a g n o s i s of breast 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 of intense pain, contamination, chronic 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 , breasts are 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 of such a powerful female symbol and the negative connotations of cancer r e s u l t s i n ps 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 often f i n d i t extremely d i f f i c u l t to a d j u s t to 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, Tepsich & T a y l o r , 1977). Also Maguire's (1975) study reported that many post-mastectomy women r e f e r r e d to themselves as "second-class", "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 to t h e i r sel f-esteem (p. 56). 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 to the personal nature of the breast l o s s , women tend to f e e l 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 of breast 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 to 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 to the post-mastectomy population (Kushner, 1982; Zalon, 1978). Even ten years ago, post-mastectomy women were not l i k e l y to be r e s t o r e d to normal appearance as a r e s u l t of breast r e c o n s t r u c t i o n , due to the newness and imperfections of breast r e c o n s t r u c t i o n techniques (Berger & Bostwick, 1984). Cocke (1977) c i t e s f i g u r e s regarding the incidence o f br 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 to t h i s s u b j e c t , i t was noted t h a t up to 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 Horton 1s estimate of 500,000 post-mastectomy p a t i e n t s who are 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 that 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 of the bre a s t i n 3 1980 to 1981. Of these women, 30 underwent breast 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). Due to the comparatively recent i n t r o d u c t i o n of br 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 to 1980 are of questionable r e l i a b i l i t y because of the outdated coding used. This coding makes i t impossible to determine the actual number of br 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 revealed that 34 women in B r i t i s h Columbia underwent breast 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 f i g u r e s 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 Surgi c a l Procedures (1983-84) show that 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 that 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 incre a s e o f br 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 that ten years ago he d i d one breast 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 of two re 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 f i v e b r east r e c o n s t r u c t i o n s per year; 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 r e c o n s t r u c t i o n s . 4 These f i g u r e s i l l u s t r a t e the growing incidence o f breast 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 option to post-mastectomy women. Because breast r e c o n s t r u c t i o n i s a v a l i d option 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 option to be made a v a i l a b l e to mastectomy pa t i e n t s (Bostwick, 1983; Graham & Turner, 1981; Hunt, 1981). These women have a r i g h t to know about the p o s s i b i l i t y of br 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 to 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 regarding 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 r e c o n s t r u c t i o n candidates. In order to e f f e c t i v e l y counsel women who are f a c i n g mastectomies, nurses must be knowledgeable of the psyc h o l o g i c a l needs of women a f t e r mastectomy, the reasons f o r increased numbers of breast 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 complications which may f o l l o w (Rut!edge, 1982, p. 470). While there i s a growing abundance of medical l i t e r a t u r e on the physical 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 to 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 that 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 nursing 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 to address t h i s need leaves nurses without d i r e c t i o n regarding the type and amount of health 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 br e a s t r e c o n s t r u c t i o n , the psyc h o l o g i c a l aspects of br e a s t r e c o n s t r u c t i o n are considered important. Both nursing and medical l i t e r a t u r e , however, devote minimal a t t e n t i o n to the process t h a t women go through when seeking information on and making 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 . 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 ps 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 breast 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 to undergo breast r e c o n s t r u c t i o n or refuse r e c o n s t r u c t i o n 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 to 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 are 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 to help 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 of 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 , 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 to 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 sub j e c t suggest that the way in which women perceive 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 perception are f a c t o r s i n making a choice about b r e a s t r e c o n s t r u c t i o n . Cases of post-mastectomy women who refused to accept the l o s s o f t h e i r breast but, a f t e r breast 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 are c i t e d as examples of t h i s viewpoint (Goin & Goin, 1981; Hugo, 1977; Needleman, 1979). Whether or not post-mastectomy women a l s o perceive 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 to 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 are aware of the s p e c i f i c needs of 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 i n c o n s i s t e n t . Statement of the Problem and Purpose The problem under study i s the l i m i t e d amount of knowledge about the decision-making process o f post-mastectomy women who consider breast 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 de 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 process r e l a t e d to breast r e c o n s t r u c t i o n . 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 t h i s decision-making process are 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 of 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 to rep l a c e the missing b r e a s t ( s ) . This may or may not incl u d e a n i p p l e a e r o l a r 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 - For the purposes of t h i s study, (1) a woman over the age of 21 who has had a mastectomy and who has co n s u l t e d a p l a s t i c surgeon and chosen to have b r e a s t r e c o n s t r u c t i o n , or (2) a woman over the age of 21 who has cons u l t e d with a p l a s t i c surgeon but chosen not to 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 of the S o c i a l Sciences, 1976, p. 60). Factor - "something (as an element, circumstance, or in f l u e n c e ) t h a t c o n t r i b u t e s to the production of a r e s u l t " (Webster, 1976, p. 813). 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 explores 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 approach to q u a l i t a t i v e r e s e a r c h . The goal of 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). R i s t (1979) s t a t e s t h a t " a l l knowledge i s s o c i a l l y c o n s t r u c t e d . No information 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 context 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 la 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, true and more accurate understanding o f the other person i s developed (Schutz, 1967). The r o l e o f the researcher i n phenomenological research i s to be "the major instrument of data c o l l e c t i o n " (Ragucci, 1972, p. 487). The success of the researcher depends upon the a b i l i t y to e s t a b l i s h rapport and respect with the sample population (Ragucci, 1972) and to conduct each study with an open mind. This prevents the for m u l a t i o n of pre-hypotheses r e l a t i n g to how and why the sample population behaves as i t does before the study commences (Lindemann, 1974; O i l e r , 1982). The researcher's r o l e w i t h i n t h i s methodology i s one of "di s c o v e r y , of generating an explanation 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 of view. "Interviewing i s both a d i r e c t source of information on b e l i e f and knowledge systems and a form of v i c a r i o u s observation to i n c r e a s e case examples of various types of 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 of 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 various a c t i v i t i e s and bodies of knowledge" (p. 346). The women who p a r t i c i p a t e i n 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 w i l l be the experts i n t h i s r e searcher'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 'intervie 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). Diers (1979) state s t h a t the researcher and her r e l a t e d thoughts, f e e l i n g s , and perceptions represent another data source. She f e e l s t hat 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 in 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 bi 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 . However, i t i s important f o r phenomenological researchers 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 . This awareness on the p a r t of 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 " (Davis, 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 of 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 acts to guide subsequent c o l l e c t i o n and a n a l y s i s of the data ( P e a r s a l l , 1970; Simms, 1981; Wilson, 1977). There i s no c l e a r - c u t separation 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 r e s e a r c h . Rather, these three processes overlap 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 (Glaser & Strauss, 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 revealed ( D i e r s , 1979). C l u s t e r s 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 of 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 that 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 breast r e c o n s t r u c t i o n . Assumptions 1. The two groups of 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 refuse breast 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 ' perception of t h e i r decision-making process can be obtained through the accurate r e p o r t i n g of t h e i r accounts. 3. An understanding of the p a r t i c i p a n t ' s decision-making about breast r e c o n s t r u c t i o n can be reached through a phenomenological research approach. 12 L i m i t a t i o n s 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 of data could be completely explored. 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 of the study and a l s o introduced the methodology. Chapter Two deals with the review of l i t e r a t u r e which r e l a t e s to the formation of 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 in t h i s study. An a n a l y s i s of the accounts i n r e l a t i o n to 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 Six di 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 of nursing p r a c t i c e , education, and r e s e a r c h . 13 CHAPTER TWO Review of the Literature In order to explore those t h e o r i e s p e r t i n e n t to post-mastectomy women who con s i d e r undergoing b r e a s t 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 of body image and decision-making, as well as l i t e r a t u r e on bre 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 dis c u s s e d f o r the purpose of g i v i n g the reader i n s i g h t i n t o the decision-making process of br 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 to mastectomy i s presented c o n c u r r e n t l y with body image and br e a s t r e c o n s t r u c t i o n theory i n order to provide a d d i t i o n a l scope and meaning. This 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 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 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 re 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 or refuse breast r e c o n s t r u c t i o n . Decision-making theory i s presented i n order to 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 r e c o n s t r u c t i o n . Both d e c i s i o n theory and research are addressed. 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 to 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 of nursing 14 research i n two major areas; f i r s t l y , the actual mechanics of the decision-making process i t s e l f are not explored, and secondly, the f a c t o r s that impinge upon a post-mastectomy woman's d e c i s i o n about breast 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. I t i s hoped that 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 com p l e x i t i e s of 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 of body image theory are useful i n understanding why the post-mastectomy woman consi d e r s the option o f br e a s t r e c o n s t r u c t i o n . 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 pa r t s and r e l a t e d f u n c t i o n s . He de f i n e s body image as: the p i c t u r e of 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 . We see parts of the body-surface. We have t a c t i l e , thermal, pain impressions ( S c h i l d e r , 1950, p. 11). Nor r i s (1978) s t a t e s that 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 are manipulation, mastery and co 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 to experience (Selekman, 1983). Body image can be c a l l e d a postural model because i t i s only through continual changes i n p o s i t i o n t h a t we come to 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 of others help us to 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 re q u i r e d to 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 are g l o r i f i e d and emphasized i n many aspects o f American l i f e ; they are 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 are 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. 30). Soc 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 are only too well aware t h a t the s i z e and appearance o f breasts are 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 of a woman (Small, 1979). T e l e v i s i o n and magazine advertisements continuously 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 a t t i t u d e regarding the a e s t h e t i c importance of 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 breast due to breast cancer. 16 Loss i s the c e n t r a l theme of 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 br e a s t , p o s s i b l e l o s s of 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 of 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 of body image caused by a mastectomy a u t o m a t i c a l l y t r i g g e r s f e e l i n g s o f l o s s . Following mastectomy, a period of g r i e v i n g f o r the l o s s of 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 i s 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 of the g r i e f r e a c t i o n r e l a t e s to the s p e c i f i c value that a woman's breast symbolizes f o r her. S i l b e r f a r b (1977-78) contends t h a t the importance of the br e a s t "depends upon the p e r s o n a l i t y of 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 di 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 that a sense of 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 that 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 i n one cancer p a t i e n t ' s statement: "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 of l o s i n g the sense of 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 des p a i r t h a t are experienced by some post-mastectomy p a t i e n t s . These women are 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 to evaluate women's perceived changes i n mar 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 r e c o n s t r u c t i o n . S i x t y - s i x women were in v o l v e d i n her research and the above changes were measured by an extensive q u e s t i o n n a i r e 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 reported r e t r o s p e c t i v e l y t h a t they had experienced 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 increa s e i n these subsequent to 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 of t h i s marked change i n body image are 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 to 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 of 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 of 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) st 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 in s t a t i n g that " i n t e r r e l a t e d components of the sexual s e l f i n clude 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 perception regarding the value o f her missing 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 to 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 sel 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 pe 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 to t h e i r sexual partner 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 of 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, unpublished). This 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 of seven y e a r s . Many p a t i e n t s reported that 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 to be seen naked . . . and to be touched on the bre 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 of more a f f e c t i o n a t e behavior from him . . . ( a b s t r a c t ) . Unfortunately, Tarabocchia e t a l . 1 s (1983) study has not been published and i t i s impossible to 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 to be sure that t h e i r research r e s u l t s are accurate to de s c r i b e t h i s sample of 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 to r e p l i c a t e the f i n d i n g s of the above study and lend i t s c i e n t i f i c support. Both the frequency of 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 oft 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 of an external p r o s t h e s i s to e s t a b l i s h any aspect of 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 of these women's bodies (Greenberg, 1980; Thomas & Yates, 1977). Woods and Woods (1975) emphasize t h a t up to t h e i r time of 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 or orgasmic response 20 a f t e r mastectomy". The ma j o r i t y of a r t i c l e s w r i t t e n on the is s u e of s e x u a l i t y of post-mastectomy women appear to 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 re 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 out and how v a l i d the f i n d i n g s were. Lerman (1983/1984) measured changes i n ma 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 to 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 to 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 p e r i o d s : pre-mastectomy, post-mastectomy, and p o s t - r e c o n s t r u c t i o n . 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 of 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 of 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 of 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 that orgasm i s experienced by the woman during sexual r e l a t i o n s (Lerman, 1983/1984). 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 of 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 c l o t h e s . Lerman's research "revealed a s i g n i f i c a n t overlap o f the marital 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 rep o r t s t h a t women claimed to have an increase i n general m a r i t a l r e l a t i o n s from the perio d before mastectomy to the pe 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 to deal with the t h r e a t of di 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 to the decreased amount of 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 a t t r a c t i v e n e s s . She a l s o r e p o r t s that 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 of these f e e l i n g s f o l l o w i n g breast r e c o n s t r u c t i o n . 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 are well-documented and supported i n the 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 (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 consider 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 to many of the other s t u d i e s t h a t are 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 are more g e n e r a l i z a b l e to the l a r g e r p o p u l a t i o n . Unfortunately, she was not able to 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 of her experimental design. F i n a l l y , 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 . The importance o f Lerman's research cannot be underestimated i n terms of addressing the r e l e v a n t concepts p e r t i n e n t to 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 of 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 s u b j e c t . Self-Concept As p r e v i o u s l y noted, there i s an inti 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 can, 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 . For t h i s reason, i t i s necessary to be aware of how a woman views h e r s e l f i n order to 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 that 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 of 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 involved with body image". Jenkins (1983) c i t e s B r i s s e t and U'Ren in 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 that "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 , values, 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 of i t s complexity (Jenkins, 1983; Carrol 1-Johnson, 1982). One study which attempted to do t h i s was c a r r i e d out 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 of mastectomy p a t i e n t s . She compared a group of 15 women who had undergone mastectomy with two other groups. These groups c o n s i s t e d of 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 Berscheid, 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 not 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 elapsed. At t h i s time, the scores of a l l the mastectomy p a t i e n t s were i n d i c a t i v e of a l o s s 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 denial as a p r o t e c t i v e mechanism u n t i l they were able to con f r o n t the l o s s o f t h e i r b r e a s t . 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 of 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 co 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 perception 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 immediately before and a f t e r t h e i r mastectomy (Timothy, 1977). T h e i r 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 lack o f the breast (Timothy, 1977). The f i n d i n g s of 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 actual body image change and the accurate perception o f that change by the person h e r s e l f . 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 of the above study, so the sample s i z e and methods of measurement are unknown. As a r e s u l t , the v a l i d i t y o f the study i s questionable 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 that 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 regarding 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 . Other authors have made c l a i m s , l a r g e l y unsupported, which are 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 healt h - c a r e p r o f e s s i o n a l s that one of 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 of 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 consider b r e a s t r e c o n s t r u c t i o n are 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 of se l f - a c c e p t a n c e p e r s i s t s , despite the la c k o f s t u d i e s to support i t . T h i s b e l i e f appears to 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). Carrol 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 to 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 bre 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 issu e o f how perception 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- to three-month follow-up f o r post-mastectomy women, to 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 to con s i d e r her f e e l i n g s about breast r e c o n s t r u c t i o n . The general l i t e r a t u r e suggests times t h a t are appro p r i a t e f o r the surgeon to 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 to the r e l e v a n t time f o r the woman h e r s e l f to 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 perception o f the best time f o r her decision-making. This timing would l i k e l y be dependent upon her perception of her changed body image and would have to be i n d i v i d u a l l y assessed during the follow-up. Impact of 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 of 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 hat 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 of 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 to 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 breast r e c o n s t r u c t i o n . During the po 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 ph y s i c a l recovery and a return 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 to begin wearing a temporary p r o s t h e s i s i s emphasized p r i o r to discharge by health 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 th a t the sooner the woman's extern a l appearance i s r e s t o r e d to normal, the sooner she w i l l a d j u s t to 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 that are 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 jew e l r y are inc 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 to a p r o s t h e s i s , i t becomes p a r t of her body image. Whether breast prostheses are s i m i l a r l y regarded as pa 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 to 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 that 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 d e v i c e s . "Many women do not f e e l at ease while wearing the 28 i r r i t a t i n g , uncomfortable, external 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 out of a hundred women she interviewed admitted t h a t t h e i r p r o s t h e s i s was uncomfortable because of i t s heaviness or tendency to s l i p out of plac e . 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 of 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 to 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 inhere n t imperfections of 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 to be expensive. P e r f e c t balance i s d i f f i c u l t to 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 - or l a r g e - b r e a s t e d . Back discomfort and muscle s t r a i n can develop as a r e s u l t of a poorly balanced p r o s t h e s i s . Many prostheses do not f e e l or sound natural when touched. They tend to be hot and i r r i t a t i n g to the skin during warm weather and to 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 to the view t h a t the p r o s t h e s i s can be inc 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 f e e l t h a t f o r some women, the external p r o s t h e s i s does not a l l e v i a t e the problem of 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 not change the 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 to be reminded that 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 of 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 to "wear low-cut s l e e v e l e s s dresses or bathing s u i t s leads to 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 perception o f her body image and can lea d to 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 of a d j u s t i n g to her changed body image. Audrey Lorde (1980) poig n a n t l y r e j e c t s the use of a p r o s t h e s i s and the idea of breast 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 to 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 to a woman th a t yes, 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 of lambswool, and/or s i l i c o n e g e l , i s to place an emphasis upon p r o s t h e s i s which encourages her not to deal with h e r s e l f as p h y s i c a l l y and emotionally r e a l , even though a l t e r e d and traumatized. This 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 of women, that we are only what we look or appear . . . with quick cosmetic reassurance, we are t o l d t h a t our f e e l i n g s are not 30 important, our appearance i s a l l , the sum t o t a l of s e l f (Lorde, 1980, p. 56). The option of 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 care (Lorde, 1980). 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 of as s e s s i n g the meaning of the br 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 of her d e c i s i o n not to wear a p r o s t h e s i s . C a r r o l l - J o h n s o n (1982) examined the impact of body image as i t r e l a t e d to women choosing or r e f u s i n g b r e a s t r e c o n s t r u c t i o n . 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 decision-making process. 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 breast r e c o n s t r u c t i o n i n order to present f a c t o r s that 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 con 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 . 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 of the h i s t o r i c a l developments in b reast 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 of breast r e c o n s t r u c t i o n i n order to put the recent changes i n t o context. These changes are 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 un 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 of breast 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 of autogenous t i s s u e t r a n s p l a n t a t i o n " (p. 243). Unfortunately, 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 com 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 of 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 that made s u c c e s s f u l breast 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 of such operations being performed. The past 10 years have seen a surge of rese 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 of the b e n e f i t s o f breast r e c o n s t r u c t i o n . The trend towards e a r l y breast cancer d e t e c t i o n , the growing w i l l i n g n e s s o f cancer surgeons to 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 to make br 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 in c r e a s e i n the amount of breast r e c o n s t r u c t i o n being performed i s the development of medical technology. 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. T r a d i t i o n a l l y , a r a d i c a l mastectomy was performed even i f a woman had a stage one breast tumour. The advent o f the modified r a d i c a l as the recommended c u r a t i v e surgery during the 70's made breast r e c o n s t r u c t i o n simpler, as there was u s u a l l y no need f o r skin g r a f t i n g . 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. P r i o r to 1976 there are few accounts o f t h i s s u r g i c a l procedure being performed. 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 breast 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 or 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 ps y c h o l o g i c a l grounds, then on te 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 a f f e c t e d p u b l i c o p i n i o n . Teimourian and Adham (1982) c i t e the U.S. Department of Health and Human Se r v i c e s (1980), "In a p u b l i c understanding survey on breast cancer ... i t was disco v e r e d that n e a r l y 4 out of 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 gene r a l , most post-mastectomy women w i l l not be able to 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 or v u l n e r a b i l i t y of the chest s k i n , the p o s s i b i l i t y o f recurrence, 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 wa 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 to 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 the 1970's, the emphasis appeared to be on the s u r g i c a l procedure and outcome of the surgery. A woman was viewed i n terms of 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 of women who were devastated by t h e i r mastectomy and whose expectations were considered too high to 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 . This 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. This 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 to a h o l i s t i c approach seems to be r e l a t e d to the 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 of the l i t e r a t u r e on br 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 t o p i c . To prevent confusion and to place t h i s information i n a chr 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 east 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 of 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 del 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 that 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 of d e n i a l . This 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 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 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 of 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 p e r s p e c t i v e i s r e f l e c t e d i n the trend towards immediate b r e a s t r e c o n s t r u c t i o n at the time of mastectomy. The s u b j e c t of 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 at length i n a subsequent s e c t i o n . I n t e r e s t i n g l y , 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 to make her l i v e with her deformity f o r a peri o d o f time so that she appr e c i a t e s the re c o n s t r u c t i o n more" (p. 810). Issues i n Breast Reconstruction Results o f surgery vary from p a t i e n t to p a t i e n t . P l a s t i c surgeons emphasize t h a t , at best, a woman w i l l appear normal i n a bathing s u i t or br 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 are 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, 1983; Goin & Goin, 1981; Greenberg, 1980). 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 to show them the range o f r e a l i s t i c p o s s i b i l i t i e s . 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 to p a t i e n t s who have had both f a i r and good r e c o n s t r u c t i v e r e s u l t s . 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 r e c o n s t r u c t i v e surgery i n p r e d i c t i n g t h e i r adjustment to the re 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 pa t i e n t focuses on b u i l d i n g rapport, which f a c i l i t a t e s the p a t i e n t becoming well-informed about the r e c o n s t r u c t i o n procedure. 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 of 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 to 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 oft e n h e l p f u l to begin by asking the p a t i e n t what she wants to t a l k about and al l o w i n g her the freedom to 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 reco 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 of 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 br 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 or r e j e c t i o n o f breast r e c o n s t r u c t i o n . 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 breast r e c o n s t r u c t i o n . 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 of added s c a r s . In the eyes of the f i r s t woman her new breast i s b e a u t i f u l and in the eyes o f the second woman i t i s hideous (p. 127). Considering the amount o f motivation 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 actual incidence of br 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 out i s low. Rutledge (1982) and Bostwick (1983) c l a i m that only f i v e percent of mastectomy p a t i e n t s undergo breast 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 to e x p l a i n the above phenomenon. Snyderman (1976) s t a t e s t h a t Most women who come to dis 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 to 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 are 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 in t h e i r own hands (p. 466). He f e e l s that 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 to being informed about r e c o n s t r u c t i o n , most of them would decide against 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 are p e r t i n e n t to breast r e c o n s t r u c t i o n . 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 that may be i n f l u e n t i a l i n the bre a s t r e c o n s t r u c t i o n decision-making process. 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 to e i t h e r deter a woman from or encourage a woman towards the idea o f breast r e c o n s t r u c t i o n . However, the i n d i v i d u a l i t y of 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 resp o n s i b l e f o r her d e c i s i o n to choose or d e c l i n e r e c o n s t r u c t i o n . Controversy about the importance o f d i f f e r e n t f a c t o r s i n the decision-making process abounds i n the l i t e r a t u r e . T h is lack o f agreement among heal 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 information on the r o l e each f a c t o r plays i n t h i s process. One cannot assume t h a t a l l o f the f a c t o r s presented i n t h i s review are r e l e v a n t to 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 are presented only as gu i d e l i n e s as to 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 to prevent or postpone a woman's d e c i s i o n to undergo breast 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 the emotional need f o r r e c o n s t r u c t i o n " (p. 175). 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 breast r e c o n s t r u c t i o n (Cocke, 1977; Rutledge, 1982). This could be due to a general lack of 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 ps 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 three- to f i v e - y e a r w a i t i n g p e r i o d or 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 to 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 are th 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 th 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 are 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 that 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 give up i n des p a i r or are too t i m i d to seek out 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 of 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 to t h e i r p a t i e n t s . 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 to 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 are, 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 to be most c a r e f u l o f . . . Because o f t h e i r intense i n t e r e s t i n self-image and br 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 to him to make them 'whole' again (Cocke, 1977, p. 12). 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 conscious' before mastectomy. Two of 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 of 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 of devas t a t i o n which followed t h e i r b r e ast 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). This process o f wanting to be 'whole' i s t i e d i n with d e s i r i n g to 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 to 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 to 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, or n e u r o t i c , but as natural and ap 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 or 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 to t h e i r p l i g h t i s outrageous. People want to feel and look normal" (p. 100). The emotional i n t e n s i t y of the above statements r e f l e c t the r e a c t i o n s o f women who have f e l t compelled to defend and j u s t i f y t h e i r d e c i s i o n to undergo r e c o n s t r u c t i o n . 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 that " 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 the longed-for sense of wholeness" (p. 136). "I f e e l my body i s back together again. 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. 75). Hugo (1977) c i t e s a p a t i e n t who wrote a l e t t e r to him regarding the powerful sense o f wholeness t h a t was r e s t o r e d to 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 or inconvenience a t the time; l a t e r followed by a qu i e t , peaceful s t a t e of 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 breast 43 r e c o n s t r u c t i o n was developed by surgeons p r i o r to the 1980's. As such, the ma 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 of 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 of a ps 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 regarding the psychosocial adjustment of 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 inno 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 of 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 to 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 to develop a b r e a s t mound. L i t e r a t u r e reviews were pre v a l e n t during t h i s p e r i o d and actual nursing research input was extremely l i m i t e d . This p a t t e r n has continued i n t o the 1980's and the only source o f research on br 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 of surgery r a t h e r than p s y c h o l o g i c a l i s s u e s . In gener 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 breast 44 r e c o n s t r u c t i o n . 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 breast 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 br 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 are d i f f i c u l t to i n t e r p r e t . There are p i t f a l l s i n v o l v e d i n pr e s e n t i n g an overview of a l l the a v a i l a b l e s t u d i e s , as many of them c o n t a i n methodological 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 usefulness i n understanding the decision-making process o f women 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 . Therefore, only those s t u d i e s t h a t have relevance to 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 are i n c l u d e d . A c r i t i c a l stance has been taken i n order to 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 of t h i s research deals with the topi c of 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 waiting p e r i o d before she i s able to accept her rec 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 of mastectomy i n approximately 50 p a t i e n t s . He re p o r t s t h a t t h e s e p a t i e n t s are 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 rese a r c h , as the author d i d not use any o b j e c t i v e method of 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 or 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 to 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 to 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 researchers found that a much higher percentage o f women i n the immediate implant group had returned to work three months a f t e r surgery than i n the c o n t r o l group, "18 of 27 vs. 12 of 26" (p. 460). The main f i n d i n g revealed a red u c t i o n i n " p s y c h i a t r i c morbidity at 3 months a f t e r o p e r a t i o n predominantly i n women with unhappy marriages. 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 to prevent much of the morbid 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 to t h e i r coming to 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 to 8 years a f t e r t h e i r mastectomy. T h e i r 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 ) of the group with delayed r e c o n s t r u c t i o n reported f e e l i n g 'deformed' a f t e r mastectomy. None of 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 of the 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 re t u r n to t h e i r preoperative sexual f u n c t i o n i n g except three, 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 ) of 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 ps y c h o l o g i c a l adjustment of 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 to 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 yea r . They were assessed using a questionnaire and several assessment instruments. The r e s u l t s of 47 t h i s study supported the previous research c i t e d i n t h i s d i s c u s s i o n . 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 or 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 of t h e i r mastectomy than those women who had bre 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. 42). 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 of r e t r o s p e c t i v e data, they lend strong support to the ps 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) dispute 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 to adjust to the missing 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 or impede the process o f mourning and p s y c h o l o g i c a l adaptation to the l o s s of the br e a s t . 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 th a t the mourning f o r the 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 of the breast 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 of repor t e d research f i n d i n g s deal with f a c t o r s that appear to i n f l u e n c e a woman's d e c i s i o n to co n s i d e r breast 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 of age and subsequent stage o f psychosocial development are f a c t o r s surrounded by co n t r o v e r s y . The f o l l o w i n g authors propose explanations 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 breasts represented a t t r a c t i v e n e s s to them are 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) are of the opi n i o n t h a t women who are cl o s e to menopause or exp e r i e n c i n g menopause may be a t a gre a t e r r i s k f o r having an intense post-mastectomy c r i s i s . T h i s r e a c t i o n may be caused by t h e i r awareness t h a t youth i s passi 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 breast to each woman and th 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 desperately about being 49 o b l i g e d to l i v e with only one br e a s t . . . but I found that 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 s i m i l a r . Where the br e a s t i s concerned, the emotions are so primal that there are no c a t e g o r i e s (Timothy, 1977, p. 132). The above authors base t h e i r opinions on inte r v i e w s o f small samples of women and co 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 are 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 give no c l e a r d i r e c t i o n regarding the importance of a p a r t i c u l a r age when i t comes to 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 to d i s c r i m i n a t e against 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 to look a t t r a c t i v e . 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 to request support p r i o r to 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 not going to 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 to request breast r e c o n s t r u c t i o n because of f e a r of being c r i t i c i z e d f o r t h e i r v a n i t y . 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 to 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 that 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 of women over 50 to c o n s i d e r breast r e c o n s t r u c t i o n . 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 candidate, saying t h a t they accept her the way she i s . They cannot understand why she would want to subject 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 give 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 metropolitan 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 of 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 of 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 easts 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 partner 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 but not to do i t f o r t h e i r sakes. Hunt (1981) reports that " i t i s rare f o r a husband to urge r e c o n s t r u c t i o n . 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* to 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% of women s t a t e d t h a t t h e i r husband or s i g n i f i c a n t other was neutral or even opposed to 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 — des p i t e having been supportive (85%) fo l l o w i n g mastectomy" (p. 8 ) . These statements suggest t h a t the decision-making process may be based more on the personal choice of each woman ra t h e r than on the 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 or whether i t i s more l i k e l y to be the woman with "impoverished inner resources or the stro 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 to 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 to 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 to 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 , to solve an inner problem or emotional t u r m o i l . 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. 32). The research f i n d i n g s from C l i f f o r d ' s study are va l u a b l e i n th a t they represent one of the f i r s t attempts to explore the reasons 52 women chose breast r e c o n s t r u c t i o n from the women's po 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 that women who co n s i d e r breast r e c o n s t r u c t i o n are no more vu l n e r a b l e to emotional d i s t r e s s and low self-esteem 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 are 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, confidence, and the sense o f being 'whole a g a i n ' ) , no studies to date have been done to evaluate any of 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 ) . Carrol 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 or 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 to undergo b r e a s t r e c o n s t r u c t i o n . She matched 13 breast 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 to undergo b r e a s t r e c o n s t r u c t i o n . Her r e s u l t s "revealed 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 to 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. 56). Both groups of women were found to 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 to confidence i n t h e i r general a b i l i t i e s "85% of the breast r e c o n s t r u c t i o n candidates f e l t very or c o n s i d e r a b l y c o n f i d e n t while only 58% of the co n t r o l subjects rated themselves as high" (p. 47). Unfortunately, the 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 to g e n e r a l i z e to the l a r g e r population o f post-mastectomy women who con 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 l a r g e r research study i n v o l v i n g 83 women who underwent breast r e c o n s t r u c t i o n was conducted by Rowland (1984). T h i s study sought to 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 expectations 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 to 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 disco v e r e d t h a t the most f r e q u e n t l y s t a t e d reasons f o r choosing to undergo r e c o n s t r u c t i o n were to "1) to be r i d of the p r o s t h e s i s , 2) to 'f e e l whole again', and 3) to 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 to be the most r i g o r o u s to date i n terms of 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 to 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 of 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 , expectations o f , and motivation f o r r e c o n s t r u c t i o n (p. 8 ) . Both pre- and po 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 are i n f l u e n t i a l i n the bre 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 or 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 or 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 ex p e c t a t i o n s " (p. 29). 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 of 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 to undergo breast r e c o n s t r u c t i o n . Examination of the l i t e r a t u r e and research on br 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 pai n , time, and money of 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 ) . Deci s i o n Theory Decision 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 to the decision-making process i n v o l v e d in b r east r e c o n s t r u c t i o n . An h i s t o r i c a l overview i s given o f the development of general Decision Theory, Behavioral D e c i s i o n Theory, and Ps y c h o l o g i c a l D e c i s i o n Theory. The important r o l e o f information i n decision-making i s a l s o addressed. The or 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 are faced with health-care 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, are recognized as being instrumental i n the i n i t i a l f ormulation o f d e c i s i o n theory i n the eighteenth century (Edwards, 1954, 1968). Hammond, McClelland and Mumpower (1980) st a t e Bernouli b e l i e v e d t h a t "the worth of 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) or va l u e s . Edwards (1954) c i t e s the f o l l o w i n g philosophy of Bentham. "Every o b j e c t or a c t i o n may be considered from the po i n t o f view of pleasure- or 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 are 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 ulti m a t e goal o f a c t i o n was perc 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). Both Bernouli and Bentham had a powerful impact on the t h i n k i n g o f nineteenth-century 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). Un f o r t u n a t e l y , the Lewinian formulations 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 not sustained (Edwards, 1968). I t was not u n t i l von Neumann and Morgenstern published t h e i r c l a s s i c book, Theory of 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 that the authors' c l a i m that men are 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. 35). In a d d i t i o n to 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 of a l l d e c i s i o n s (Edwards, 1954). I t 57 was noted by Edwards (1954) at t h i s p o i n t i n time that "the development of the economic theory of consumer's decision-making . . . has become exceedingly e l a b o r a t e , mathematical, and voluminous" (p. 380). This 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 lack 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 f o l l o w i n g b a s i c p r i n c i p l e s : One, the p r i n c i p l e of 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 opinions 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 basic 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 actual behavior of d e c i s i o n makers t h a t i s v a l i d but the expectation of 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 Decision 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 of 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 of 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 of t h e i r information processing 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 et a l . , 1980; K o z i e l e c k i , 1981). For t h i s reason, Decision 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 of 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 of 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 of mathematical, economical, 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 Decision 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 of decision-making, demonstrated how h i s psychology focus could supplement the economists' D e c i s i o n Theory (Hammond et a l . , 1980). His a r t i c l e on "The Theory of D e c i s i o n Making", published 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 Decision 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 et a l . , 1980). One of 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. 45). Edwards searched f o r a theory to descr i b e the behavioral short-comings of 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 of man held 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 of 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 . Psychological D e c i s i o n Theory Within an i n t e r v a l of twenty years 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 to 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 of d e c i s i o n behavior (Hammond e t a l . , 1980). According to Hammond e t a l . , the primary goal o f Ps y c h o l o g i c a l D e c i s i o n Theory i s to "seek the manner in 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 to 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 are 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 to 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 , or denying r e s p o n s i b i l i t y f o r h i s own choice 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. 45). 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 heal t h - c a r e d e c i s i o n s are even more vu l n e r a b l e to f a i l u r e in terms of 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 to 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 la c k of h e a l t h , energy, and time, or 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 are not dependent on the external environment leads K o z i e l e c k i to maintain that 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 of 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. 23). Psy c h o l o g i c a l theory moves beyond the realm of behavioral d e c i s i o n theory because i t in 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 of 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 Psychological 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 of 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 , systematic, and d i f f i c u l t to e l i m i n a t e " (p. 23). Psychological 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 of 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). This 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 of 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 actual r e a l i t i e s of human d e c i s i o n making, Hammond et 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 of 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 of 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 out t h a t there i s no s c i e n t i f i c way of 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. J a n i s 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 . Therefore, 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 of [ 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. 25). The preceding s e c t i o n discussed the various t h e o r e t i c a l concepts r e l a t e d to general D e c i s i o n Theory, Behavioral D e c i s i o n Theory, and Psy c h o l o g i c a l Decision Theory. 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 consider 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 Decision 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 focus. I t i s assumed t h a t knowledge of the underlying 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 of c r i t i c a l f a c t o r s inherent i n the decision-making process regarding breast 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 of 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 of information 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 that i s made i n the best i n t e r e s t o f a decision-maker i s the r e s u l t of using v i g i l a n t i nformation p r o c e s s i n g . Sachs (1981) reports 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 best of h i s a b i l i t y and w i t h i n h i s i n f o r m a t i o n - p r o c e s s i n g 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 of 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 could 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 information r e l e v a n t to f u r t h e r e v a l u a t i o n of 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 or expert judgement to which he i s exposed, even when the information or judgement does not support the course of 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 or executing the chosen course of a c t i o n , with s p e c i a l a t t e n t i o n to 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 to m a t e r i a l i z e (p. 11). The i r contention i s " t h a t f a i l u r e to meet any of 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 of a c t i o n , and were a l s o cognizant o f the values of every a l t e r n a t i v e (Edwards, 1968). He presents concepts which are 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 information 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 to consider 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 to co n s i d e r a l l the a v a i l a b l e i n f o r m a t i o n . 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 to 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 of 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 to do i s co 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 1 i s found" (p. 26). When 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 of 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 of information-seeking i n c l i e n t s as i t r e l a t e d to decision-making about he 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 of 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 nursing 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 of c l i e n t s i n seeking and a c q u i r i n g information 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 t e l e v i s i o n . Lenz (1984) claims t h a t "the information 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 information 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 of 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 "information 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 in 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 of 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 information 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 Therefore, a person who determines the information acquired to be inadequate may stop searching, 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 to 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 information from sources encourage 'premature t e r m i n a t i o n 1 of 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 predefined goals encourage c o n t i n u a t i o n (p. 65). 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 processing 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 information-seeking among women d e c i d i n g about breast r e c o n s t r u c t i o n . I t w i l l be important to examine the decision-making 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 information 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 la 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 br 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 of research on p a t i e n t decision-making i n r e l a t i o n to health care i s s u e s revealed a l i m i t e d amount of 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 . Information about decision-making tends to focus more on d e c i s i o n s made by health 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 (Eisenberg, K i t z & Webber, 1983; Howe & Wilcox, 1983; Turner & Kofoed, 68 1984). The next p o r t i o n of 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 of v i g i l a n t decision-making, evaluated the degree of readiness shown i n p a t i e n t s who d e s i r e d treatment of 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 of readiness 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 of a c t i o n i n coming to a d e c i s i o n . 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 others (Sachs, 1981). This 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 of 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 erceived deformed appearance, Sach's study has relevance 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 adolescents 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 process, and the e v a l u a t i o n of 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 goals t h a t the adolescents had f o r surgery a s s i s t e d i n shaping the meaning of 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). Results of 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. T h i s process i s comparable to br e a s t r e c o n s t r u c t i o n decision-making i n that none of 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 to 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 labour and d e l i v e r y . The three choices examined were b i r t h at home with lay-midwife attendants, b i r t h i n the a l t e r n a t e b i r t h centre 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 discovered 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 ' . This 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 or the f i n a l d e c i s i o n i t s e l f . This i n v o l v e s d e f i n i n g or 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 of a l t e r n a t i v e s so th a t they favour the p r e f e r r e d or chosen a l t e r n a t i v e s and at 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 to 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 . The f o l l o w i n g excerpt gives i n s i g h t i n t o the decision-making process o f one post-mastectomy woman: Even 3 years a f t e r the mastectomy, when I cons 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 of 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. I was very r a t i o n a l about t h i s whole s u b j e c t . 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 to make your back f e e l b e t t e r . So I decided to go ahead f o r those reasons. Berger and Bostwick c i t e numerous examples of 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 di s c u s s e d f u r t h e r i n Chapter F i v e . The above concluding 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 lack 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 breast r e c o n s t r u c t i o n . 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 of 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 va l u a b l e to examine research t h a t 71 deals d i r e c t l y with breast 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 or research a v a i l a b l e on a n a l y z i n g the actual mechanics of the decision-making process i n women who con 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 t i s hoped t h a t the f u t u r e w i l l provide enlightenment 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 from a p a t i e n t ' s p o i n t o f view. P a t i e n t decision-making 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 years to 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, breast r e c o n s t r u c t i o n , and decision-making. These three t o p i c s are h e l p f u l i n understanding the needs of the post-mastectomy woman, the r e l e v a n t f a c t o r s a woman co n s i d e r s i n undergoing breast 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 that a comprehensive p i c t u r e could be developed to uncover the p e r t i n e n t f a c t o r s t h a t are c r i t i c a l to women who are co 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 to 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 . This concept i s useful f o r e x p l a i n i n g the meaning of the breast l o s s and the need f o r some woman to consider 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 regarding 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 t h a t d i s t i n g u i s h D e c i s i o n Theory, Behavioral Decision Theory and Psychological Decision Theory. Of these three t h e o r i e s , Psychological D e c i s i o n Theory appeared to 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 of nursing research i n r e l a t i o n to p a t i e n t decision-making from the p a t i e n t ' s p o i n t o f view became evident. 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 lack of 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 to women who are 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 to 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 information from r e c o n s t r u c t i o n candidates would the r e f o r e be useful 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 that the c u r r e n t study w i l l c o n t r i b u t e to a gre a t e r understanding o f the decision-making needs of post-mastectomy women who co n s i d e r breast r e c o n s t r u c t i o n . 73 CHAPTER THREE Methodology I n t r o d u c t i o n As described 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 gr e a t e r d e t a i l how the paradigm of 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 research study. The t o p i c s discussed i n c l u d e the s e l e c t i o n of 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 researcher was guided by the fo l l o w i n g authors who des c r i b e the phenomenological methodology: Davis (1978), Diers (1979), Lindemann (1974), and O i l e r (1982). S e l e c t i o n o f P a r t i c i p a n t s This study i s concerned with the decision-making process o f post-mastectomy women who decided e i t h e r to choose or refuse breast 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 of seeking information regarding breast r e c o n s t r u c t i o n . This 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 br e a s t r e c o n s t r u c t i o n to di s c u s s i t with a p l a s t i c surgeon would have already gone through a decision-making process with regard to t h i s procedure. The phenomenological approach a s s e r t s that women who themselves l i v e the experience of breast r e c o n s t r u c t i o n decision-making are 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, that post-mastectomy women who do not seek c o n t a c t with a p l a s t i c surgeon are not i n v o l v e d i n decision-making regarding 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 , t h i s l a t t e r group would be an i n t e r e s t i n g group of women to study, i n view of the f a c t t h at the m a j o r i t y o f post-mastectomy women never see a p l a s t i c surgeon. I t was deemed beyond the scope o f the study however, to 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 . C r i t e r i a f o r S e l e c t i o n Given t h a t b r e a s t cancer i s rare i n women under 21, t h i s study was l i m i t e d to those 21 years or 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 to 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 of one p l a s t i c surgeon were f i r s t contacted through an explanatory 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 leave t h e i r name i f they were i n t e r e s t e d i n ta k i n g p a r t i n the study. The researcher then sent an information and consent l e t t e r to 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 returned the signed consent form they were then contacted by phone. An i n t e r v i e w to 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 to her. The p a r t i c i p a n t s who were p a t i e n t s of the second p l a s t i c surgeon were i n i t i a l l y contacted by the p l a s t i c surgeon's o f f i c e nurse, who explained the study to 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 researcher would c o n t a c t them by l e t t e r . When the signed consent was sent back the researcher contacted 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 cases, a complete explanation of the study was given v e r b a l l y to the 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 to 64 y e a r s . Ten of 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 at the time of the study. A l l of 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 married. 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 married. A l l but three o f the p a r t i c i p a n t s had c h i l d r e n . Several o f these women had c h i l d r e n l i v i n g at 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. Six women were volunteers 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 of the si x t e e n p a r t i c i p a n t s had undergone breast 76 r e c o n s t r u c t i o n . 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 breast r e c o n s t r u c t i o n s took place 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 four 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 east 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. A t o t a l of t h i r t y - f i v e i n t e r v i e w s were completed. Information d i s c l o s e d a f t e r the tape recorder 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 pa r t of 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 breast r e c o n s t r u c t i o n (see Appendix B). The content of these two questions was d e r i v e d from a review of r e l a t e d l i t e r a t u r e . The semi-structured i n t e r v i e w format was used i n order to encourage f u l l expression of the decision-making experience by each p a r t i c i p a n t (Wilson, 1977). This format a l s o allowed the researcher to perceive 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 questions 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 occurred between the f i r s t and second i n t e r v i e w . The second in t e r v i e w was f a c i l i t a t e d by the rapport 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 researcher and p a r t i c i p a n t . By v a l i d a t i n g themes de 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 to 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 interviewed 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 place i n March and May of 1983. The purpose of t h i s i n i t i a l study was to 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 r e c o n s t r u c t i o n . 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 refuse breast 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 inte r v i e w s took place i n January and February of 1984. The second s e t o f inte 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 researcher 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 researcher'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 breast r e c o n s t r u c t i o n . Construction of Accounts Q u a l i t a t i v e methodology contends that the p a r t i c i p a n t s ' experience, as presented through t h e i r accounts, i s t h e i r t r u t h ( O i l e r , 1982). 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 meaning of the p a r t i c i p a n t ' s experience 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 that the researcher'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). Thus, the researcher attempted to monitor her own s u b j e c t i v e experience 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 research process. 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 so that the true meaning of each p a r t i c i p a n t ' s experience can u n f o l d . 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 of 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 of i n f o r m a t i o n . This 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 content, 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 of data c o l l e c t i o n and a n a l y s i s . The major themes that emerged from i n i t i a l a n a l y s i s of the accounts were v a l i d a t e d by the researcher, ensuring 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 of 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 to 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 nstances of events as r e l a t e d , and l i n k i n g these instances 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 to reduce the volumes of data c o l l e c t e d i n t o a meaningful handful of named concepts (p. 115). This l e v e l of 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 E t h i c a l C onsiderations 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 of 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 Subjects. The r i g h t s of the p a r t i c i p a n t s were pr 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 refuse p a r t i c i p a t i o n was safeguarded by ensuring t h a t i n t e r v i e w s could only take place 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 of 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 advised t h a t t h e i r p a r t i c i p a t i o n was voluntary and t h a t they could 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 questions, to terminate the interview, or to request erasure of any tape or p o r t i o n of a tape at any time during 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 material t h a t used names in connection with the study. Access to the data would be l i m i t e d to the 81 researcher and her advisory 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. There were a l s o no f i n a n c i a l remunerations. Some p a r t i c i p a n t s d i d acknowledge that they found i t b e n e f i c i a l to d i s c u s s t h i s experience with the res 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. 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 presented. Methods of 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 the 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 of the p a r t i c i p a n t s , in which they d e s c r i b e t h e i r experiences with breast 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 of wholeness versus nonwholeness which recur throughout each p a r t i c i p a n t ' s decision-making process. 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 . This d e s c r i p t i o n i s followed by t h e i r accounts of t h e i r search f o r wholeness. This includes t h e i r decision-making process regarding breast r e c o n s t r u c t i o n and the establishment of the meaning of t h e i r cancer experience. S p e c i f i c aspects of 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 represents 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 of 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 to the explanation u n d e r l y i n g each p a r t i c i p a n t ' s d e c i s i o n . For the purpose o f i n c r e a s i n g understanding o f the p a r t i c i p a n t s ' decision-making, the women's accounts of wholeness and non-wholeness are introduced by t h e i r d e s c r i p t i o n s of the breast lump d i s c o v e r y , mastectomy and adjuvant treatment experiences. 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 of a s t o r y , d e s c r i b i n g t h e i r experience with cancer i n a n a r r a t i v e form. The beginning o f t h e i r s t o r y was the diagnosis of cancer. Next, the women desc 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 . The p a r t i c i p a n t s ' r e a c t i o n s were important because they l a t e r i n f l u e n c e d t h e i r d e s i r e to e i t h e r pursue or refuse 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 to re-examine the meaning of 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 of the events that 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 of 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 of events and y e t t h e i r memories of 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 of a breast 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 [the breast lump] was. I thought I never do tha t . 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 in a c e r t a i n way and j u s t happened to 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 centre . . . r i g h t there. So t h e r e f o r e , i f i t had been underneath the breast I never would have n o t i c e d i t . P. I woke up i n the middle o f the night 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 quick. I've got cancer. . ." Immediately a t t h a t moment I made up my mind t h a t ' s what i t was. Although the ma 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 breast examination, most of the p a r t i c i p a n t s discovered t h e i r own breast 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 ' breast lumps were discovered by t h e i r doctors. S t o r i e s r e l a t e d to the s u r g i c a l experiences were v i v i d l y remembered because of the trauma t h a t the ma j o r i t y of 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 that 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 of 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 to 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 of a lump coming out of my br e a s t and under my arm and I would be f i n e . And then when I came to i t [the b r e a s t ] was gone. And I think that 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 [the doc 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 to have i t [the bre 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 in there and they took i t [the 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 revolved 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 experiences, which n e c e s s i t a t e d postponement of br 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 to the s t r e s s these women experienced from the combined a s s a u l t of cancer and mastectomy. P. The chemotherapy's hard on you. 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 to you, w e l l , you're bound to be depressed. P. I was f r a n t i c as to how I was going to manage when I was p h y s i c a l l y so ill . . . I know I t r i e d to 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 coul d n ' t get 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 regarding breast r e c o n s t r u c t i o n . For 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 to contemplate any f u r t h e r surgery u n t i l the 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 to 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 to contend with the e f f e c t s of adjuvant therapy while c o n s i d e r i n g b r e a s t 87 r e c o n s t r u c t i o n . P. I was under chemotherapy f o r a year and a h a l f and di 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 that to 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 job and s t a r t to f e e l t h a t I was well again. P. Then when they t o l d me I had to take chemotherapy f o r a year . . . w e l l , I was so s i c k f o r that year ... i t was bad. I thought of i t but t h a t i s n ' t anything. I j u s t wanted them to get over with the chemotherapy ... I knew I was going to do i t [have breast 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 to r e c i t i n g s t o r i e s about discovery o f the lump, mastectomy, and adjuvant therapy, the ma j o r i t y o f p a r t i c i p a n t s placed the events of diag 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 to be away th a t day and I was seen by one of 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 that he c o u l d n ' t . . . Christmas was coming and I was having a huge engagement party 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 discovered i t [the breast lump] I guess probably i n about . . . l e t me think . . . 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 while I was w a i t i n g f o r the bed we'd gone up to Penticton 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 h e p a t i t i s . Everytime I looked sideways my eyes would hurt and I'd i t c h a l l over. P. Because I'd already had a hysterectomy you see, years 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 at 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 cancer] because I wasn't able to concentrate . . . 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 of Wholeness A key theme to be discussed 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 to 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 . This perception of wholeness appeared to be both ph y s i c a l and mental. In these accounts, f e e l i n g s o f wholeness seemed to 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 to f e e l a lack of wholeness a f t e r her mastectomy. However, there was no way of p r e d i c t i n g p r i o r to 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 to 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 or i n d i r e c t l y , to 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 could not incorporate 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 breast 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 to have l e t go of the missing breast and, with the help of 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 of wholeness was a theme that recurred 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 process, 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 of 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 of wholeness are the two subthemes of emotional adjustment to cancer and mastectomy and the p r o s t h e s i s experience. These important aspects of 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 of having a mastectomy. P. The l o s s of the breast d i d n ' t h i t me . . . no, i t was 91 the word cancer. Cancer represented death. I t was the end. That was the way I f e l t . P. Because i t was something I couldn't do anything about, no matter how hard I worked or no matter how much I t r i e d . 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 that 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 to be O.K. with me and t h a t I was going to be f i n e . The presence of 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 diagnosis 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 to 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 die and that was a l l there was to i t . . . I t was scary. 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 to beat t h i s . . . I am not going to l e t t h i s get me down . . . and I'm going to 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 u p s e t t i n g . 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 b r e a s t . 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. I j u s t f e l t r i p p e d o f f . . . why 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 b r e a s t 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 b r e a s t 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 l i f e . P. In f a c t i f I had not had t h a t [ b r e a s t r e c o n s t r u c t i o n ] 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 l i f e . A v a r i e t y of behaviors were de s c r i b e d 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 experiences. 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 could t e l l anybody. P. Like I s a i d i t was about a year . . . 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 of p i l l s , a s p i r i n s , 292's, or anything I could get my hands on. I'd drink a l o t ... I s t i l l drink a l o t compared to what I used to before. In c o n t r a s t , a few p a r t i c i p a n t s claimed that they d i d not experience a sense of g r i e f as a r e s u l t of the mastectomy. The f o l l o w i n g women dis 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 d i d not experience. 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 depression. I j u s t c o uldn't see what the purpose of 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 at i t as a l o s s . I looked at i t as the breast was secondary ... To me what was the most important t h i n g was to get r i d of 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 of t h i n g . You know that's happened and you're a l i v e and well and tha 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 co n s t a n t l y there . . . you had to e i t h e r accept i t or you would have had to l e t i t bother you. And I accepted i t and that 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 didn' t r e a l l y f e e l any of 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 tha t ' s a f i n e piece of surgery. I t was a b e a u t i f u l piece of surgery. This lack of 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 that 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 at such an a t t i t u d e may have been instrumental i n help 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 described 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 of 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 of the brea s t , as 95 opposed to 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. P r o s t h e s i s Experience The p r o s t h e s i s experience surfaced 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 de 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 ge 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 process regarding breast r e c o n s t r u c t i o n . F e e l i n g s expressed i n r e l a t i o n to the pr o s t h e s i s were predominantly negative and focused on the physi c a l uncomfortableness of the br e a s t form. For example almost a l l the p a r t i c i p a n t s complained of 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 material was in co n t a c t with t h e i r s k i n . 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 hot, 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 that they were unable to 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 of 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 to 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 of 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 o f f - b a l a n c e . 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 of the form during a c t i v i t y . P. One of the t h i n g s t h a t I keep saying i s t h a t I hated, I hated the whole business of 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 during the day as i t s o r t of s l i p s and makes b l i s t e r s . I t was very awkward. P. 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 of 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 of 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 already bothered by t h e i r prostheses' 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 saying 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 to a r e c r e a t i o n centre or 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 to get changed or hide myself some place where no one would see me or go i n the washroom and get changed i n there. 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 great two p i e c e s . I t was l i k e a bean bag you know. That's i t , they are 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 of about two fe e t I think . . . Always conscious that people might be offended or 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 of undressing i n p u b l i c p l a c e s . 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 of the p r o s t h e s i s to f a l l away from the chest causing 98 the bathing 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 stark r e a l i t y . A l l 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 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 [got 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 of 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 of the women's freedom of choice 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 of 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 of 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 depression 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 sleeves 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 choice i n c l o t h i n g s t y l e s when they began wearing a p r o s t h e s i s . P. A f t e r the op e r a t i o n was over - a l o t of my c l o t h e s d i d n ' t f i t . I t was a l o t to get used t o . P. When I would look a t these low-plunging things and think oh - gee how awful - i f I could j u s t wear one of 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 ever di d before. 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 breast 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 yes, no problem a t a l l . You don't even know i t ' s there. 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 . Except f o r the money I have to pay f o r them. I t ' s t e r r i b l e . 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 r e c e i v e d 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 incre a s e i n the awareness and readiness o f p a r t i c i p a n t s to con 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 . 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 lack of wholeness d i d not d i s s i p a t e over time f o r many of the p a r t i c i p a n t s . Instead, i t c a t a l y z e d a search f o r wholeness that culminated i n the s e c u r i n g o f br e a s t r e c o n s t r u c t i o n . P. I want e v e r y t h i n g done - I want to f e e l normal and I don't mind how much surgery I have. I wish to f e e l a whole person again. P. But i t [ l a c k of 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 br 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 or l a c k i n g i n wholeness a f t e r t h e i r mastectomy. None of 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 . S i m i l a r l y , those who f e l t whole f o l l o w i n g mastectomy continued to f e e l whole. Some of the p a r t i c i p a n t s chose to proceed with b r e a s t 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, co n v e r s e l y , a p a r t i c i p a n t who refuse 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 lack o f f e e l i n g whole and the need to 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 to 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 of non-wholeness a l s o seemed to 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 of the mastectomy scar. I t i s d i f f i c u l t to know with any c e r t a i n t y whether the women who f e l t whole with only one bre 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 par 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 of 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 f e l t they had no need f o r i t because they continued to 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. Li k e I s a i d , I wasn't r e a l l y that i n t e r e s t e d ... I 102 f e e l 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 ? I hadn't even given i t a thought ... i t wasn't t h a t important to 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 br 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 or anything and I d i d n ' t f e e l a t the time that I was changing p s y c h o l o g i c a l l y or was having these things l i k e God I'm not whole or whatever so t h a t ' s why I l i k e to think t h a t I added a new dimension to my psyche. R. When you had a mastectomy, d i d i t a f f e c t your f e e l i n g s of wholeness? Did you f e e l s o r t o f any l e s s whole? P. No, I would have expected to f e e l t h a t way but I di d n ' t and I can only a t t r i b u t e i t to 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 to women who d i d f e e l t h at way and say things l i k e you're h a l f a woman . . . I j u s t wanted to t e l l them I was not a side o f beef or 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 th a t way. It i s i n t e r e s t i n g t h a t she expected to f e e l l e s s whole and 1 0 3 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 of 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 of 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 at how much the l o s s of a breast a f f e c t e d her sense of wholeness. This lack of wholeness a f f e c t e d her sense of 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 think t h a t I am o v e r l y f i x a t e d on my breasts 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 of 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 of 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 of 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 at i t too o f t e n . . . and i t was a mess. P. I t j u s t made me f e e l bad . . . when I came out of the bath there was a great 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. When I had the oper a t i o n ... the f i r s t bath I'd taken ... I j u s t about died. 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 couldn't see myself ... i t even bothered me to look. I co u l d n ' t wait to get my b r a s s i e r e and c l o t h e s on ... I t reminded me of one of 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 refused 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 only 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 f e e l okay as long as I don't walk around the house ... as long as I am under the covers, can't see anything. R. But to 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 self-esteem i s concerned, how you f e e l about y o u r s e l f ? P. I don't ... I never f e l t the same about myself anymore. Not l i k e I used t o . The powerful d r i v e to regain wholeness was a l s o manifested in the d e c i s i o n of those 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 . 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 to 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 got 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 to have two breasts with two n i p p l e s with aerolas t h a t are the same s i z e more or l e s s , with n i p p l e s the same s i z e t h a t are both i n the same d i r e c t i o n . P. I would never have been s a t i s f i e d j u s t to stay with i t [b r e a s t mound] without the r e s t o f i t , the 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. Li k e I cou 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 ev e r y t h i n g . I was j u s t dancing a l l over the pl a c e . Having a n i p p l e to rep l a c e the one th a t they had l o s t was paramount to 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 breast to appear p h y s i c a l l y whole before they could f e e l mentally whole. In keeping with the d i f f e r e n t degrees of wholeness f e l t by p a r t i c i p a n t s , two women were able to 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 re 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 of 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 to 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 b e t t e r . P. I think anything i s b e t t e r than nothing . . . I've got nothing to 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 of cancer i n r e l a t i o n to themselves. E s t a b l i s h i n g Meaning An important p a r t of the women's search f o r wholeness was r e l a t e d to t h e i r process of 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 that took place as they were r e a c t i n g to and a d j u s t i n g to the cancer and mastectomy. Part of 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 f e e l with things l i k e t h a t . . . worse things have happened to other people . . . through l i f e we're a l l going to get something one way or another and t h i s was perhaps a l o t e a s i e r than some things . . . I t ' s not l i k e an arm or l e g or an eye. P. So i f i t i s n ' t a mastectomy, cancer, i t ' s a heart a t t a c k . I f i t i s n ' t a heart a t t a c k , i t i s something e l s e . There are 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 of 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 to look around and there are a l o t of people worse o f f . As they compared themselves to other people and other s i t u a t i o n s , they concluded, "I could 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 co n c e p t u a l i z e d according to what they knew w i t h i n t h e i r own l i v e s . No one e l s e but the woman h e r s e l f could 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 to 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' experiences, 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 to 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 s u r p r i s i n g . The women experienced a heightened awareness of the p o s s i b i l i t y of dying before they had expected t o . P. We a l l have to 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 get t h i n k i n g along those l i n e s and i t ' s depressing. You're not t h a t o l d . P. But then i f you have to d i e . . . I always say when my time comes and the good Lord taps h i s hand on my shoulders and says you're coming, I'm going to say, "I'm coming. I'm coming." I'm not going to 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 luxury o f becoming complacent and t h i n k i n g that there would always be enough time to 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 to o l d age. P. I think I t r y harder. I think you're more w i l l i n g to take each day as i t comes . . . know that l i f e i s not here f o r e v e r . You've got to enjoy y o u r s e l f now today, not put o f f doing i t to next week. I f you want to do something you've got to 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 of 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 experience. Several p a r t i c i p a n t s discovered unsuspected strengths 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 f e e l because I've had i t [cancer] I've met so many ni 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 hat 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 to 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 to deal with t h i s s t r e s s f u l p e r i o d i n her l i f e . 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 to mastectomy was one of the most ba s i c s t r a t e g i e s . The majority of 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 to accept and you have to 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 are other t h i n g s that you can d i e o f and th a t the bi 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 to s o r t of put i t i n the back of your mind and get on with your l i f e and keep busy. These two themes of 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 of 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. ... get i n t o your 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 that much. I l l 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. J u s t l o o k i n g forward to things that were happening i n t h e i r l i v e s . I d i d have good f r i e n d s . I had q u i t e an a c t i v e s o c i a l l i f e , which helped me. P. 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. I s a i d I'm wearing i t [permanent p r o s t h e s i s ] ... I only knew at that 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 f o r my mental a t t i t u d e as well as my p h y s i c a l a t t i t u d e . 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 that 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 . 1 1 2 P. I d i d n ' t want sympathy. I wanted to lash out ... I got out the anger by being a c t i v e a l l the time. I worked through t h a t phase by having so much to 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 to using your arm again you're f i n e but . . . 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 but i t ' s there. 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 to pounce on them and hug them and I f e e l l i k e saying get l o s t u n t i l you s t r a i g h t e n out your a t t i t u d e . But I had the same [experience] t h i n g . . . you don't expect people to be laughing and jumping but those were the people I app r e c i a t e d because I d i d n ' t want to s i t and c r y a l l the time. Let them c r y a t home. They expressed q u i t e c l e a r l y t h at i t was not h e l p f u l to be always asked how they were f e e l i n g as i f people expected them to be t e r m i n a l l y ill. In a d d i t i o n , these women seemed eager to share what had been useful f o r them, e s p e c i a l l y i f they could 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 to 113 r e s t o r e normalcy in 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 outside themselves i n the quest f o r wholeness. A c q u i r i n g 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 of information i n response to the search f o r wholeness. 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 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 includ 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 information 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 nformation 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 volunteers i n the Reach f o r Recovery Or g a n i z a t i o n . A l l these sources of information f o r the second group of p a r t i c i p a n t s appeared to be of equal i n f l u e n c e . The f o l l o w i n g statements i l l u s t r a t e examples of information a c q u i s i t i o n from sources other than health p r o f e s s i o n a l s . P. Well, I think I always knew that there was a p o s s i b i l i t y to have breast 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 of the tummy. Then I was down at my other g i r l f r i e n d ' s ... i n the States and they had i t on t h e i r T.V. 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 could have breast 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 of t h i s i nformation was a l s o an important i s s u e f o r the m a j o r i t y of p a r t i c i p a n t s , the i s s u e of c r e d i b i l i t y i s beyond the scope of t h i s paper. P a r t i c i p a n t s reacted to information 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 at 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 option at 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 consider breast 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 1 1 5 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 or even l a t e r . 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, r i g h t . P. I d i d n ' t r e a l l y want anybody e l s e chopping me up again ... so a c t u a l l y i t wasn't f o r a few years or so a f t e r ... I don't think t h a t I d i d think too much of 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 or 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 to see my doctor [ p l a s t i c surgeon]. The m a j o r i t y of p a r t i c i p a n t s reacted 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 formation about b r e a s t r e c o n s t r u c t i o n . For 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. This 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 to 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 got books and I got i n touch with the cancer s o c i e t y . I got a l i s t of 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 to a l o t o f people and got t h e i r o p i n i o n on i t . . . s i x or seven . . . and how happy they were. And I guess i t was probably the opinions from t a l k i n g to these other 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 to 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 hat mentioned i t to 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 reading e v e r y t h i n g I could get my hands on i f I'd see a magazine or a Ch 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 to ask my own doctor. For some women, the way i n which they perceived information proved to be as important as r e c e i v i n g the in f o r m a t i o n . There 117 appeared to be c e r t a i n pieces of 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 of breast 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 breast 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 reveals 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 of breast 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 t h i n g . 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 that i f she ever d i d l o s e a breast 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 information regarding 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 breast 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 at that time. These p a r t i c i p a n t s demonstrated a more low-key response to the information about breast 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 of the p a r t i c i p a n t s who underwent breast 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 refuse 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 of so many of the breast 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 information 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 of 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 d i s a p p o i n t e d . 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 breast 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 that 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 decision-making process. While p a r t i c i p a n t s could 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. One 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 120 immediately a f t e r she spoke with a mastectomy volunteer who had undergone breast r e c o n s t r u c t i o n . The e l u s i v e nature of these f a c t o r s could be a r e s u l t of the complex weave of f e e l i n g s and thoughts that i n f l u e n c e the s p e c i f i c a c t i o n of decision-making. Therefore, i t i s h i g h l y p o s s i b l e t h a t some of the u n d e r l y i n g impulses that motivated the decision-making were a t an unconscious l e v e l . Time, as a component of 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 of t h e i r decision-making. For example, several 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 claimed 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 to a y e a r . P. I always wanted i t . . . I t was mentioned to me when they t o l d me I was going to have my br e a s t o f f . . . tha t there was a p o s s i b i l i t y of having b r e a s t r e c o n s t r u c t i o n . R. You can't remember ever making the d e c i s i o n or . . . P. Never. P. I think 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 nights and I j u s t woke up one morning and s a i d oh to heck with i t , I'm not going to 121 go through i t . . . J u s t f o r g e t about i t . P. Well, 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 year before I got to doctor [ p l a s t i c surgeon] to have i t done. But I don't know why i t took so long. I guess i t i s j u s t to make up my mind to decide to go ahead with i t . I n t e r e s t i n g l y enough, while 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 length of 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 majority were unable to p i n p o i n t the exact amount of time i n v o l v e d . 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 unclear about the time in 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 place and were unable to s p e c i f y the year 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 honestly don't remember. R. Do you remember the year? 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 t h i n k i n g of anything e l s e . I t ' s r e a l l y l i k e t h a t . I can remember when I saw the doctor [the p l a s t i c 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 , s i x months . . . about March. I'm not p o s i t i v e on t h a t . . . could 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 that be March of '76? P. Hmm, i t must have been around there. This phenomenon could 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 of 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 t h e i r d e c i s i o n . 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 of the l i f e events that 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 of 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 that'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 of events may well have been more s i g n i f i c a n t to these p a r t i c i p a n t s than the length of time each step of the 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 to undergo breast r e c o n s t r u c t i o n appeared to possess l e s s awareness of 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 spanned a longer time p e r i o d . 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. Perhaps these i n s t a n t d e c i s i o n s had a more emotional b a s i s , t h a t proved d i f f i c u l t f o r these women to 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 to 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, often 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 of each p a r t i c i p a n t ' s unique decision-making s t y l e , i t appeared to 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 of the p a r t i c i p a n t s , whose perception regarding the timing of 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 to the second. In a d d i t i o n to time, decision-making about the n i p p l e was a f a c t o r t h a t r e f l e c t e d decision-making 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 to have n i p p l e r e c o n s t r u c t i o n i s one that faced every p a r t i c i p a n t who decided to undergo breast r e c o n s t r u c t i o n . Eleven of the p a r t i c i p a n t s chose to 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 breast 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 n i p p l e r e c o n s t r u c t i o n . 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 regarding the n i p p l e tended to r e f l e c t t h e i r decision-making s t y l e . The f o l l o w i n g excerpts h i g h l i g h t the process of decision-making about the n i p p l e . P. When I j u s t had the p r o s t h e s i s in and no n i p p l e on the end of 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 ... I want i t done completely . . . 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 breast 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 to the second in t e r v i e w . She had ob v i o u s l y weighed the consequences and decided that she only needed the convenience of the br e a s t mound and that 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 to 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 basic 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 to pay f o r the sake of 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 could have done i t a l l i n one operation maybe . . . but a n i p p l e i s a very small t h i n g to 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 of 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 to get you to 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 could see i t and nobody e l s e c o u l d ... he wanted to 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 ni 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 di d n ' t have another. And so I decided to go a l l the way and have the n i p p l e . The n i p p l e appeared to be needed because of the d e s i r e f o r symmetry which l i k e l y symbolized normalcy f o r these p a r t i c i p a n t s . 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 pat t e r n o f decision-making that r e f l e c t e d a l l other personal decision-making. 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 that 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 explanation could be that they used a past decision-making s t y l e combined with a newer, modified s t y l e . One needs to 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 chose to refuse t h i s surgery. 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 of 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 things 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 i t . 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 already 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 surgery. Some women acknowledged the r i s k s of 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 operation because I had gone through another very traumatic 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 with. That's j u s t i t . 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 know. 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 t h i n g . P. I f I thought there 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 only t h i n g t h a t scared me ever was i f I d i d s t i r up any cancer that was there but then you can't think l i k e t h a t because i f I thought i t was there i t might come. ... I thought maybe i f they cut but then I f i g u r e d I got r i d of 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 of the 129 p a r t i c i p a n t s ' perception o f surgery on the decision-making process. 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 of 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 think 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 complications 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 of 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 . One p a r t i c i p a n t had f i v e b r east r e c o n s t r u c t i o n s u r g e r i e s . 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 breasts 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 [surgery] 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 hat 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 breast r e c o n s t r u c t i o n viewed surgery as traumatic. 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 cut my back, take a piece 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 o l d e r . Mine's already 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 four of 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 smaller 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 i n 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 of 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 of 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 of 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 of absolute r e s p e c t and admiration. These women placed great 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 r e l a t i o n s h i p . Although the strength of the bond v a r i e d among breast 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 God. P. And when I went to him [the doctor] l i k e I s a i d , the guy could 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 afterwards, 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. I r e a l l y do and ... I think 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 . P. 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. I t r u s t e d him completely ... I f he c o u l d do another operation on me I wouldn't worry about i t . The amount of 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 of 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 east 133 r e c o n s t r u c t i v e operations were more l i k e l y to 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 persevering through numerous s u r g e r i e s over an extended course of time. Conversely, those women who refused b r e a s t r e c o n s t r u c t i o n surgery tended to p e r c e i v e the surgeon on a more neutral b a s i s . There was no need f o r them to 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 br 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 erception o f surgery was c o n s i s t e n t with the cho 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 r e c o n s t r u c t i o n . Those p a r t i c i p a n t s who could not j u s t i f y the 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 co 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 perception o f the 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 evi d e n t . 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 context o f the meaning t h a t each p a r t i c i p a n t attaches to her d e c i s i o n . 134 The p a r t i c i p a n t s d e a l t with such complex issues as e s t a b l i s h i n g meaning of 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 r e f u s i n g breast r e c o n s t r u c t i o n . Regaining wholeness was the f i n a l step of the women's decision-making 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 perc e i v e d as more supportive 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' d e c i s i o n s . 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 that i t was t h e i r own d e c i s i o n . The partners f e l t s t r o n g l y t h a t the women should not undergo b r e a s t r e c o n s t r u c t i o n 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 r e c o n s t r u c t i o n ] 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 surgery. P. 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 at your 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 I'm that o l d y e t . . . Made me q u i t e mad. 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 of 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 that you're going to a medical doctor that'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 years o f f your 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 sat them down and I s a i d , "Well, I think I need i t , " and a f t e r I'd explained 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 glad you explained 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 think 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 of 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 perceived 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 of 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 that to my body [have breast 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 choice of having a hand as a p r o s t h e s i s attached to my remaining limb I don't think anyone would have nearly given me the f l a c k f o r i t t h a t I got fo r 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 perverse, I mean s i c k . Something i s wrong with you. You are so hung up on your breasts and sex too ... I mean how can you deal with people l i k e t h a t . I stopped t r y i n g . P. 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 to 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 of so many of 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 th 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 of f r i e n d s . They coped with t h i s c h a l l e n g e 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 . P a r t i c i p a n t s 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 br 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 or 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 to t h e i r f a m i l i e s . Both groups of 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 r a t i o n a l e f o r t h e i r d e c i s i o n . 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 or d i f f e r e n t . . . Because I thought i t was good t h a t they could 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 to be. P. Yeah, t h a t ' s the b i g t h i n g , you're not confronted 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 to be c o n s t a n t l y reminded of i t . P. We a l l have to have a c e r t a i n amount of self-esteem to f u n c t i o n . And you're no good to 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 parts o f your l i f e . P. I think 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 get 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 br e a s t r e c o n s t r u c t i o n . Because I f e e l l i k e l i f e i s too shor 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 i s not. I says i f I had my f i n g e r c ut o f f I'd want that back ... I j u s t wanted to 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 to l i v e with what I co n s i d e r m u t i l a t i o n , why should you have to do that? Why should you have such a lousy time? I f f o r a b r i e f p e r i o d o f dis 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 . . . to l i v e with i t [mastectomy]. But I don't think I would be as happy as I am now. I would s t i l l be searching f o r t h i s or wanting i t done. Most p a r t i c i p a n t s s t a t e d several 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 things f o r me ag a i n s t i t . 141 . . . Too many i f s . . . I thought no, at t h i s stage o f the game i t ' s not f o r me. I t ' s not r i g h t . P. I'm not r e a l l y s o r r y t h a t I made th a t d e c i s i o n . I'm not comfortable t h i s way but who's to say I'd be comfortable the other way [with breast r e c o n s t r u c t i o n ] ? 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 breasts 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 r i g h t d e c i s i o n ... a few of them [ f r i e n d s ] s a i d t o me when I was going to have i t done, "I'm glad 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 glad I d i d n ' t go through with i t because they are not very s u c c e s s f u l . I t was apparent from t h e i r accounts that 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 challenged or r e q u i r e d to defend t h e i r d e c i s i o n to 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 doc 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. P a r t i c i p a n t s 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 the two groups o f p a r t i c i p a n t s was the amount of j u s t i f y i n g they f e l t compelled to 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 the 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 to r e a l l y know what the experience of 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 breast 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 out 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 the b e l i e f t hat they were open-minded enough to i d e n t i f y with some of the concerns o f the bre 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 the p a r t i c i p a n t s who underwent breast r e c o n s t r u c t i o n . For 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 of 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 to l e t go of the cancer experience and get on with l e a d i n g normal l i v e s . 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 of the 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 described as r e g a i n i n g a sense of wholeness. Re s t o r a t i o n o f 1 4 3 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 as 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 look 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 to be an i n t e g r a l p a r t of being able to acqu i r e a sense of wholeness. Because f e e l i n g s o f wholeness and normalcy appeared to be in s e p a r a b l e f o r the 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 fe e l more normal. P. I'm pleased. I think 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 things 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 breast 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 couldn't take my cl o t h e s o f f i n f r o n t of 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 f r e a k . 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 of these p a r t i c i p a n t s i n r e g a i n i n g 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 could 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 f o l l o w i n g statements. P. 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 of 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. But I am t o t a l l y happy. P. I think i t ' s a very p o s i t i v e piece of 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 i t . 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 again. 145 I t 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 of 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 of b r e a s t r e c o n s t r u c t i o n was s t r i k i n g . Convenience a l s o was mentioned repeatedly 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 p r o s t h e s i s . P. To be able to get up i n the morning and to be able to put on a bra and not pin rubber boobs on. P. Well I had s a i d before t h a t you know I wasn't unhappy before, i t j u s t f e l t so much n i c e r afterwards, 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 d i f f e r e n c e . 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 . I mean to change my l i f e immeasurably ... 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 kind of 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 of the constant p h y s i c a l reminder of the cancer experience. This constant reminder was as 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 di s e a s e . 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 one. 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 the r e c o n s t r u c t i o n you've always got something there. And you're not c o n s t a n t l y reminded of having cancer. P. You don't even think about i t [cancer and mastectomy] unless somebody brings up the s u b j e c t . I j u s t f e e l 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 several 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 of t h e i r cancer experience. P. 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 fe e l t h i s well because as I s a i d three years ago I d i d n ' t think I'd be able to look t h i s f a r ahead and be enjoying l i f e the way I am today. So I am very, very g r a t e f u l f o r t h a t . 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 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 to get on with t h e i r l i v e s . One of 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. This excitement about the b e n e f i t s o f br 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 to 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 expressions. They were t h r i l l e d a t the physi c a l and mental transformation brought about by breast r e c o n s t r u c t i o n . The powerfulness o f the br e a s t r e c o n s t r u c t i o n experience i s best documented through the 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 f e e l 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 th a t wants i t done. P. I s a i d to [the p l a s t i c surgeon], "One t h i n g I'm disappoin 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 the surgery to 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 breast cancer p a t i e n t i s i n there g e t t i n g r e c o n s t r u c t e d . 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 ' decision-making process regarding b r e a s t r e c o n s t r u c t i o n . 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. This 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 . A l l the p a r t i c i p a n t s put the cancer-mastectomy experience 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 . F a c t o r s 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 to br 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 . For 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 to information about b r e a s t r e c o n s t r u c t i o n . 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 that 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 the p o s i t i v e aspects o f surgery, i n c o n t r a s t to the women who de c l i n e d r e c o n s t r u c t i o n , who perce i v e d surgery as negative and r i s k y . 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 r e c o n s t r u c t i o n were not re q u i r e d to defend t h e i r d e c i s i o n to the same extent as those who underwent t h i s surgery. A l l p a r t i c i p a n t s s t a t e d t h a t they were s a t i s f i e d with the outcome of t h e i r d e c i s i o n s . F i n a l l y , i t seems evi d e n t from these accounts t h a t t h i s decision-making process i s amazingly complex. These women experienced d i f f i c u l t y i d e n t i f y i n g the p e r t i n e n t 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 about breast r e c o n s t r u c t i o n . I t i s only through the ri c h n e s s and depth o f these accounts t h a t a degree of i n s i g h t and understanding i n t o t h i s 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 of the p a r t i c i p a n t accounts i n r e l a t i o n to 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 the 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 . The purpose of t h i s d i s c u s s i o n i s two-fold. F i r s t l y , i t seeks to 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 or refuse breast r e c o n s t r u c t i o n . Secondly, i t demonstrates how the decision-making 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 . The l i t e r a t u r e review presented i n Chapter Two concluded that s c i e n t i f i c a l l y sound research r e l a t e d to the decision-making process i n br e a s t r e c o n s t r u c t i o n was sca r c e , thereby s u b s t a n t i a t i n g the need to study women's actual experience i n making a d e c i s i o n regarding breast r e c o n s t r u c t i o n . 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 . I t i s the researcher's i n t e n t to 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 are 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 d i s c u s s i o n , i n c l u d i n g l i t e r a t u r e p r e s e n t i n g a f e m i n i s t p e r s p e c t i v e on women's experiences with b r e a s t r e c o n s t r u c t i o n . 151 The purpose of t h i s study was to examine and de s c r i b e women's perceptions of the decision-making process regarding breast r e c o n s t r u c t i o n . The conceptual framework f o r t h i s d i s c u s s i o n of 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 process. These key themes were presented i n Chapter Four. Loss o f Wholeness  Women Who Underwent Breast Reconstruction The majority of the 13 women who underwent breast 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 , or 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 to cause a profound sense of ps y c h o l o g i c a l l o s s t h a t a f f e c t e d t h e i r s e l f - c o n c e p t . The women reported 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 breast to being only o c c a s i o n a l l y bothered by i t . Others wished that symmetry could be r e s t o r e d to them because they f e l t unbalanced. Several women f e l t t h at 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 of f e e l i n g l e s s whole. This decreased sense of 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 artner. The negative e f f e c t on self-esteem a r i s i n g from f e e l i n g s of a lack of 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), poignantly 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 according to the shrinks 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 night 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 at times almost becomes a pleas 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 of b o d i l y wholeness i s des 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 of that f e e l i n g . . . I'd catch a glimpse of my naked s e l f i n the m i r r o r ... i t j u s t never 1 5 3 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. 40). The importance of 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 to "rank order t h e i r f e e l i n g s o f concern, at the time o f surgery, with respect to 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 followed by f e m i n i n i t y was the most important f o r them but maintained t h a t wholeness was the major concern of women they c o u n s e l l e d . 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 to 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 breast r e c o n s t r u c t i o n i s not a si g n t h a t a woman i s vain or t r y i n g to turn i n t o a sex symbol. I t i s a sign that she wants to regain a n a t u r a l , normal body contour and re 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 in the study. T h e i r need to 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 to regain t h e i r sense of s e l f . C l i f f o r d ' s (1979) research f u r t h e r supports S p l e t t e r ' s viewpoint by i l l u s t r a t i n g t h at 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 of 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 to 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 of f e m i n i n i t y seemed to 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 of f e m i n i n i t y r a t h e r than the views of others about t h e i r femaleness predominated (p. 25). Fear o f l o s s of wholeness s t a r t e d f o r some women pr 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 to have a mastectomy, then a hysterectomy? . . . Are they going to chop away a t my body? ... I don't want to l i v e by being chopped i n t o l i t t l e p i e c e s . One year we'll take t h i s , and another y e a r we'll take that (p. 59). Despite the f a c t t h a t several women experienced a preoper a t i v e f e a r of l o s i n g t h e i r b r e a s t , the maj o r i t y of women appeared r e l i e v e d at 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 to surgery, the ma j o r i t y of women were unable to p r e d i c t the pervasive and powerful e f f e c t s that a lack of 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 of 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 to f e e l p s y c h o l o g i c a l l y whole and went on to have breast r e c o n s t r u c t i o n ; conversely, others who experienced some degree of l o s s of wholeness refused t h i s surgery. From t h i s i t appears t h a t lack of 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 con 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 of a woman's d e c i s i o n to choose or refuse t h i s surgery. Perhaps the f a c t t h a t so few women go on to 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 of wholeness, most of these women r e s o l v e t h e i r negative f e e l i n g s regarding l o s s of wholeness. I t i s d i f f i c u l t to know whether acceptance of 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 experiencing adjustment problems and f a i l s to 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 to the wholeness r e s o l u t i o n process i n women who do not con s i d e r breast 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 to health p r o f e s s i o n a l s . We might ask: Why are 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 of wholeness than others? How can health 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 or of a more permanent nature? Search f o r Wholeness S i m i l a r to the maj o r i t y o f women in t h i s study, women portrayed in the l a y l i t e r a t u r e i n i t i a l l y expected to ad j u s t to 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 great need f o r wholeness and epitomizes the value assigned to wholeness by the 156 la y 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 of my body, s t i l l aching with incompleteness. Most of the time, of course, I h i d t h a t ache. Over the years I had learned to push the d i s s a t i s f a c t i o n to the back of my mind . . . But the whole point was t h a t i t r e a l l y wasn't necessary — not anymore . . . A l l I wanted to do was to get back where I s t a r t e d , look the way I had once looked (1978, p. 32). 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 of wholeness was the most powerful i n f l u e n c e on those women who chose to undergo breast r e c o n s t r u c t i o n . The pr 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 to other f a c t o r s , a f f e c t s decision-making regarding breast r e c o n s t r u c t i o n . The wholeness needs of 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. This was manifested 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 that "our exp 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). This 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 to 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 that 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 stated that 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 at 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 to have more surgery as long as i t makes me f e e l b e t t e r or 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 that s t i c k s out more; t h i s one i s f l a t . You know the tr 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 to 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 of 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 , extensive amounts of surgery, and ph 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 ach 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 breast 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 breast r e c o n s t r u c t i o n are more equipped with the s k i l l s necessary to achieve t h e i r personal goals than women who choose to refuse r e c o n s t r u c t i o n . I t i s a l s o 158 p o s s i b l e that the very process o f o b t a i n i n g breast r e c o n s t r u c t i o n , which i s not as acceptable to 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 health i s s i g n i f i c a n t f o r those women who chose to undergo breast r e c o n s t r u c t i o n . She s t a t e s : "Health i s the a b i l i t y to change because we choose t o , because we experience pain with what we are at present, and not because someone e l s e wants us to change" (p. 93). She contends t h a t , "health i s f i n d i n g pleasure from our own bodies, pleasure that we give ourselves or allow o t h e r s , men or women, to give us" (p. 93). 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 health management by exchanging t h e i r disfigurement 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 of wholeness and h e a l t h . The three women who cons u l t e d with a p l a s t i c surgeon and ev 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 obviously i n i t i a t e d more of 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. For 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 de 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 vast m a j o r i t y of women choose to wear an 159 external p r o s t h e s i s or have br 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 in v o l v e s a woman's d e c i s i o n to 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 or 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 pres e n t i n g h e r s e l f to 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 her 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 the meaning of her bre 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 issu e needs to be r e s o l v e d in order to 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 of l o s s . Any amputation i s a ph 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 of s e l f . The absence of my bre a s t i s a recu r r e n t sadness, but c e r t a i n l y not one th a t dominates my l i f e . I miss i t , sometimes p i e r c i n g l y . When other one-breasted women hide behind the mask of p r o s t h e s i s or the dangerous fantasy of 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 of keeping women with breast 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 to 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 her than through the cosmetic s o l u t i o n s o f a pr o s t h e s i s or breast 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 of her s e l f and her body-image . . . encourages women to dwell i n the 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 the present, and from coming to terms with the changed planes o f her own body. Since these then remain a l i e n to her, buried 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 br 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 to focus her energies upon the mastectomy as a cosmetic occurrence, to 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 could i n c l u d e her own death (p. 57). Lorde r e j e c t e d the s t e r e o t y p i c pressure of s o c i e t y to re t u r n immediately to her previous outwardly s e x u a l l y a t t r a c t i v e appearance by co 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 of her own l i f e experience i n order that she could come to a f u l l acceptance and a p p r e c i a t i o n of her one-breasted s t a t e . She urges other women to do the same. Another example of 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 during her d e c i s i o n about wearing a pr 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 bre a s t cancer, and 90 percent have mastectomies, there are a l o t of 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, to myself, t h a t I want to t r y not wearing a p r o s t h e s i s (p. 22). 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 to terms with a mastectomy. In view of s o c i e t y ' s entrenched bias 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 refuse to use a p r o s t h e s i s w i l l be denied support from he 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 discussed as an o p t i o n . Lorde (1980) makes the po 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 c o n d i t i o n to the p u b l i c . 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 health 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 br 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 to a more h o l i s t i c focus. Given the n o n - s t a t i c nature of 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 to 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 the 162 f u t u r e . Regaining Wholeness and Recovery Every woman i n t h i s study who f e l t a lack of wholeness preceding breast 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 of 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 get 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 are happy because i t i s a vast improvement over having a f l a t c hest. 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 the l i v e s of women who make the t r a n s i t i o n from non-wholeness to wholeness. I f e l t as i f a shade had been r a i s e d , the darkness of f e a r and anxiety l e f t me almost e n t i r e l y ... I have almost f o r g o t t e n what happened to me ... 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 in my heart (p. 100). A l l o f the women who underwent breast 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 of t h i s surgery; f i r s t l y , r e s t o r a t i o n of 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 to put the f e a r and sadness o f the cancer experience behind them. They were able to accomplish t h i s l a r g e l y because the grim p h y s i c a l reminder of the breast l o s s was 163 gone. This allowed these women the freedom to 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 of t h e i r cancer experiences. Snyder (1984) de 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 of the most i n s i d i o u s side e f f e c t s of cancer i s the impotent anger f e l t by the 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 to 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 of 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. 52). One can e n v i s i o n the tremendous sense of re 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, enab l i n g her to put the cancer-mastectomy experience i n a meaningful p e r s p e c t i v e f o r her. The women i n the study were a l l able to i d e n t i f y with the f e e l i n g t hat breast r e c o n s t r u c t i o n was something t h a t they had chosen to do th a t symbolized f o r them, perhaps, the v i c t o r y of 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 defined sense of 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 to refuse the option of 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 consi d e r s the options a v a i l a b l e in r e l a t i o n to her own needs. The f o l l o w i n g d e f i n i t i o n of health i s broad enough to 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 , breast r e c o n s t r u c t i o n , or to be s i n g l e - b r e a s t e d as an adaptive response to the l o s s o f wholeness a f t e r mastectomy. Sandelowski (1981) c i t e s Ullman who defin e s health as " s t r i v i n g f o r a 'peace' t h a t allows us to ' s i t and l i s t e n to what i s i n s i d e of [us] without i n f l u e n c e ' " (p. 93). A l l p a r t i c i p a n t s demonstrated i n the accounts that they had l i s t e n e d to 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 breast r e c o n s t r u c t i o n i n r e l a t i o n to 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 of the choice they made. Perhaps t h i s i s p a r t of 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 eloquent 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 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 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 of the women who underwent 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 i n d i c a t e that 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 to perceive 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 e x p l a n a t i o n 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 that 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 to l i v e , along with the b e l i e f t hat 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 to 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 oft 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 are vuln e r a b l e to t h i s phenomenon because of the trauma of 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 br 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 of her surgeon. If I needed to have my head severed, and he was going to do i t , I would go i n t o the surgery with a l l of 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 to e x p l a i n anything t h a t I wanted to 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 supportive 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 refuse 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 that the doctor's c a p a c i t i e s transcended ordinary 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 suppo r t i v e , i n f o r m a t i v e , and appeared competent. The woman who refused 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 pr a i s e of the p l a s t i c surgeon's empathy and c a r i n g . This woman stated that 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 to do i t . I t seems c l e a r from these f i n d i n g s t h a t the amount of rapport developed between p a t i e n t and doctor was at 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 of time they spent together. There a l s o appears to be a l i n k between the complexity o f the s u r g i c a l procedures and the amount of res p e c t each woman f e l t f o r her p l a s t i c surgeon. For example, the woman who underwent 12 operations to have her breasts 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 r e c o n s t r u c t i o n . 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, too, 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 the p a r t i c i p a n t s ' need to 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 th e r a p e u t i c r e l a t i o n s h i p helps to 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 con s i d e r breast 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 of 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 to understand the p a t i e n t ' s f e e l i n g s . 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. 53). 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 res 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 the 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 claims t h a t genuineness and uncond i t i o n a l warmth, which are 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 c l i e n t . The f i n d i n g s i n t h i s study reveal that the women perceived t h e i r p l a s t i c surgeons as having the th e r a p e u t i c q u a l i t i e s t hat 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 of the study women, t h i s woman had p r e v i o u s l y had conta c t with a p l a s t i c surgeon with whom she could not r e l a t e . When I met him, I l i k e d him immediately. He has a gen t l e , 168 p a t i e n t , l o v i n g p e r s o n a l i t y ... 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 revealed r e a l love and concern . . . Most doctors are b r i l l i a n t . U n f o r tunately, most b r i l l i a n t people do not have a human s i d e o f love and compassion f o r people because these q u a l i t i e s don't seem to 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 to l a t c h on to him and enjoy your a s s o c i a t i o n because he i s a ra 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 nurturant, and l e s s emotional than women" (p. 84). 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 to confirm the s e x i s t views of 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 to men. There are 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 to 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 of the masculine stereotype, t h i s may appear to be h y s t e r i c a l behavior (p. 78). Given t h i s inherent 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 that Stevens e t a l . (1984) discovered that a l l of 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 to obtain from a male p h y s i c i a n . . . When the male surgeons seemed to 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). Further, 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 to 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 . Therefore, a male p h y s i c i a n i s l i k e l y to au 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 of her br e a s t . I t i s 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 of the women i n the study. This i s l i k e l y due to the woman's b e l i e f that the p l a s t i c surgeon perceived 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 to undergo r e c o n s t r u c t i o n . One explanation 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 of rapport 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 (1983) makes reference to the f o l l o w i n g feminine q u a l i t i e s : " r e c e p t i v e , empathetic . . . p r e s e r v a t i v e , " which appear to c o r r e l a t e with the su p p o r t i v e , n u r t u r i n g behaviors shown by the p l a s t i c surgeons to t h e i r women pa t i e n t s (p. 21). Women would more l i k e l y be able to 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 cond i t i o n e d to r e l a t e to oth e r s . I t appears t h a t there was a harmonious blending 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 ated the rapport between themselves and t h e i r p a t i e n t s . 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 are "androgynous" and "may be more adaptable i n a v a r i e t y o f contexts than e i t h e r 'masculine or feminine' males and females" (p. 91). Given t h i s , i t i s important to recognize t h a t a post-mastectomy woman i s more l i k e l y to form a rapport 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 or 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 of rapport between the woman and her p l a s t i c surgeon was necessary i n order f o r the woman to endow him with g o d - l i k e powers. The greater the perceived rapport between the woman and her doctor, the gre a t e r l i k e l i h o o d t h at she would put him on a pedestal when d e s c r i b i n g 171 t h e i r i n t e r a c t i o n . Such behavior has been noted i n other women undergoing breast 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 of t h i s . A f t e r every o p e r a t i o n I think 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 while 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 to operate again next week to make them more symmetrical, I'd say okay (Berger & Bostwick, 1984, p. 177). My f i r s t implant was too high, round and f i r m i n the beginning. At f i r s t I was a f r a i d to go back to the surgeon . . . Last time he s a i d , "This i s not a good enough r e s u l t . So we're doing i t over" ... I was g l a d t h a t he recognized the problem. I thought I would j u s t have to l i v e with i t that way (Snyder, 1984, p. 134). Both women appear to 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 r e c o n s t r u c t i o n . The second excerpt 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 to the surgeon. She had learned to expect him to take f u l l r e s p o n s i b i l i t y and to be all-knowing when i t came to 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 are accorded high status 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 status 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 status r e l a t e s to power. Two things happen when a person has high s t a t u s . F i r s t , the high status i t s e l f can form a base of 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 greater 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 are 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 of 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 to operate on them. This supreme t r u s t appears to 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 of the f i r s t b r e a s t r e c o n s t r u c t i o n . Once i n place i t never wavered, d e s p i t e complications which a f f e c t e d a few of the women i n t h i s study. They appeared w i l l i n g to undergo any amount o f r i s k and repeated surgery to 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 of the power!essness of post-mastectomy women versus the powerfulness o f t h e i r surgeon. One can speculate as to 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 plained 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 , or whether a d d i t i o n a l f a c t o r s are op e r a t i n g . Why would women w i l l i n g l y and eagerly submit t h e i r bodies to be 173 a l t e r e d s u r g i c a l l y , knowing a l l the inherent 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 these s u r g i c a l r i s k s . From what i s known about the importance o f 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 that 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 option 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. This 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 of 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 perceived trauma of surgery f o r the purpose of breast r e c o n s t r u c t i o n . Sandelowski (1981) quotes F e s t i n g e r : Whenever we are confronted 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 true about the c h o i c e s , and a l t e r n a t i v e explanations of the t r u t h about the choices ... 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 created by being exposed to a c o n t r a r y b e l i e f . Disharmony or discordance i s uncomfortable and t h e r e f o r e motivates a 174 person to do something about i t i n order to cr e a t e c o g n i t i v e consonance (p. 10). 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 experiencing c o g n i t i v e dissonance and r e a c t i n g to i t by b o l s t e r i n g i s t h e i r tendency to e l e v a t e the surgeon to the st a t u s of a demi-god. This 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 to f e e l secure l e t t i n g anyone a l t e r her body who i s not perceived as extremely competent. Fears about the inherent r i s k s o f breast r e c o n s t r u c t i v e surgery are thus minimized i f the women perceived t h e i r surgeons as having magical, super-human powers. The a b i l i t y to 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 the l i t e r a t u r e appear to 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 , the women themselves d i d not seem to 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 to pe 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 together to achieve the d e s i r e d goal o f r e s t o r i n g b r east contour. At times, the r e l a t i o n s h i p appeared to be more of a mutual needs sharing experience, 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 that the woman's needs might i n c l u d e the need f o r intense i n t e r e s t and involvement on the p a r t o f the p l a s t i c surgeon, while the p l a s t i c surgeon might need to c r e a t e 175 as p e r f e c t a breast 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 the woman's image of the powerful doctor versus her perc 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 explained 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 of 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 of powerlessness on her p a r t and a t the 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 to e n v i s i o n r e g a i n i n g i t through breast r e c o n s t r u c t i o n i s a powerful f a c t o r i n t h e i r d e s i r e to undergo t h i s surgery. Every woman i n the study emphasized the p o s i t i v e aspects of 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 of the r e c o n s t r u c t i v e procedure. Sandelowski (1981) st 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 of self-esteem and b e l i e f i n the a b i l i t y to 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 to decision-making was explored to 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 to decision-making about b r e a s t r e c o n s t r u c t i o n . The ma 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 to d e l i v e r or abort i n the event of 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 to be too d i s s i m i l a r to the bre 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 to 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 that women per c e i v e and c o n c e p t u a l i z e events i n the world around them was drawn on. In s i g h t i n t o these c o g n i t i v e processes enhanced understanding o f women's decision-making process. 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 the f a c t t h a t most of these women d i d not appear to 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 to the t r a d i t i o n a l view held by ps 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 t h a t 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, Ja n i s and Mann (1977) proposed a model of " 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 are 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 of these steps to vary i n g degrees but omitted others. The maj o r i t y of women appeared to 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 c o n c l u s i o n . They could not a r t i c u l a t e the d e c i s i o n process, only that they always knew they d e s i r e d breast 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 to undergo r e c o n s t r u c t i o n appeared to 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 refused 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 to 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 to 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 the same c o n v i n c i n g and spontaneous manner as some of 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 to go through the steps of the 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, the r e t r o s p e c t i v e nature of t h i s study may have made i t d i f f i c u l t f o r the women to r e c a l l the steps i n t h e i r decision-making. Another f a c t o r to co n s i d e r i s that i n d i v i d u a l s not accustomed to 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, that many of these women d i d not use any systematic decision-making process. 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 speculates how of t e n people a c t u a l l y have the time or motivation to 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 or 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 to 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 breast r e c o n s t r u c t i o n surgery. The f a c t that 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 that she would make the same d e c i s i o n i f she were given the opportunity again, suggests that the v i g i l a n t decision-making process was not re q u i r e d to 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 to be a r a t i o n a l d e c i s i o n to one person may not appear so to 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 or 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 of 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 patterned 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 gives 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), Poussaint 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 are s o c i a l i z e d to r e l y on t h e i r emotions and experiences while men are encouraged to 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 that 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 excerpt 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 of men and the perceived i r r a t i o n a l and i n t u i t i v e nature of women. Man i s seen as the maker of 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 of h i s c h i l d h o o d , a reminder of the body, and a reminder of s e x u a l i t y , passion, and human connectedness. She i s the r e p o s i t o r y of emotional l i f e and of a l l the nonrational elements of human experience (p. 12). S h e r i f (1979) claims t h a t t h i s s t e r e o t y p i c notion t h a t women and men think 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 maturity, 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 expressiveness" (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 opposite of systematic, 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 of 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 stored pool of cues. Such people solve problems by t r i a l and e r r o r , and t h e i r wisdom springs 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 of " 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 of an i n t u i t i v e model to a r r i v e a t the best d e c i s i o n f o r themselves. For these women, t h e i r d e c i s i o n represents an emotionally-charged commitment to 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 regarding i n t u i t i o n and the f i n d i n g s o f t h i s study support the 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 to environmental cues regarding b r e a s t r e c o n s t r u c t i o n . I t appears as i f these women were c o n t i n u a l l y processing information but were not aware of i t . When the women ta l k e d about the meaning o f these cues, t h e i r words were emotionally laden. These environmental cues acted more as a c a t a l y s t f o r those women who chose breast 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 of c o n s c i o u s l y weighing the pros and cons o f t h e i r d e c i s i o n . According to the f i n d i n g s , those women who chose breast 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, to favour an i n t u i t i v e over a r a t i o n a l model of decision-making when compared to those who refused 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 to 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 or 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 to 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 to the idea of r e c o n s t r u c t i o n f o l l o w i n g exposure to 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 of 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 to 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 the wish to appear normal and f e e l good about her appearance again were the r e a l reasons u n d e r l y i n g her d e c i s i o n . Then, I s t a r t e d to pick up an a r t i c l e here and an a r t i c l e there on br 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 or 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 to make your 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 to 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 to 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 to 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. "Why not me? Why shouldn't I do t h i s ? I want to be 'whole' again" (Berger & Bostwick, 1984, p. 196). Both o f these women's experiences echo the decision-making experiences o f the women i n t h i s study. I t i s important to 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 to using only an i n t u i t i v e process or only a r a t i o n a l decision-making process. In Luker's (1975) study o f abo r t i o n and the 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 the women used a r a t i o n a l model i n th a t t h e i r decision-making was designed to e f f e c t t h e i r personal g o a l s . Luker maintains t h a t 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 fo r t h a t i n d i v i d u a l . She goes on to s t a t e that 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 or c l e a r l y a r t i c u l a t e d : i n perhaps the ma 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 to the f i n d i n g s , several women appeared to 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 that even i f a woman appears to 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 r e c o n s t r u c t i o n , 183 which may have emotional overtones, that 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 or 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 to s i t u a t i o n a l f a c t o r s . We do not know what kind o f d e c i s i o n s use which model and to 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. Fa c t o r s that i n f l u e n c e adherence to s p e c i f i c models have not been s t u d i e d . McMillan (1982) claims t h a t , c o n t r a r y to 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 of 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 or s k i l l depends upon i n t u i t i o n does not suggest t h a t such knowledge excludes thought and sus 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 to the way i n which the f a c t s of 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 of 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 are 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 or ' 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 of d i f f e r e n t reasoning processes or t h e o r i e s of knowledge as of 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. 41). 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 to some degree that 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 to think has been v a l i d a t e d . This 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 in the study, i t i s c r i t i c a l to note that every woman's s t y l e was unique. Berger and Bostwick (1984) found t h i s to be true among the 8 women they interviewed about undergoing b r e a s t r e c o n s t r u c t i o n . A l l o f these women revealed a d i f f e r e n t s t y l e of decision-making. Weighing the Consequences The mechanics o f weighing consequences i n decision-making are described 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 of decision-making. This model was explored 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 Decision 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 to these various o p t i o n s , choose one option as pr e f e r a b l e to another, and then a c t to 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 relevance f o r the f i n d i n g s o f t h i s study than the cumbersome model of v i g i l a n t decision-making. However, both these models of 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 to e f f e c t the best d e c i s i o n . This process was more e a s i l y observed 185 in those women who were able to a r t i c u l a t e a method of weighing consequences. I t i s h e l p f u l to 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 unconsciously, 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 e f f e c t i v e decision-making to 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 ap p l i e d to 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 are 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 . "These are 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 r i s k t a k i n g " (p. 85). These authors e x p l a i n t h a t 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 preference 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 represents 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 of 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. 92). The authors contend t h a t these c r i t e r i a are then ranked numerically i n terms of a v a i l a b l e a l t e r n a t i v e s i n order to as s i g n a p r i o r i t y i n r e l a t i o n to 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 of r i s k i s s e l e c t e d as the best d e c i s i o n . In the f i n d i n g s , a l l the women were able to r e f e r i n some 186 way to these three important elements of 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 perceived these elements d i f f e r e n t l y . For those women who de s i r e d r e c o n s t r u c t i o n , the d e s i r a b i l i t y of br e a s t r e c o n s t r u c t i o n was always judged to be the most important a l t e r n a t i v e while the r i s k s were minimized. Conversely, the women who refus 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 the 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 of 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 the 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 the 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 not be h e l p f u l or 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 are c l e a r l y r e l e v a n t to the f i n d i n g s of 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 scussed the 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 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 lack o f adherence to the t r a d i t i o n a l model of v i g i l a n t decision-making. The r o l e of i n t u i t i v e t h i n k i n g was found to be r e l e v a n t to the women's decision-making regarding 187 breast r e c o n s t r u c t i o n . The v a r i a b i l i t y of each woman's decision-making process was emphasized. A d d i t i o n a l key f i n d i n g s involved the importance of wholeness i n the women's d e c i s i o n to consider breast 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 do c t o r - p a t i e n t r e l a t i o n s h i p to those women who underwent r e c o n s t r u c t i o n . 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 i n t o understanding the complexity of the decision-making process in women who con 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 . Chapter Six presents c o n c l u s i o n s from the f i n d i n g s and discu 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 research. 188 CHAPTER SIX Sumary, Conclusions, and Implications for Nursing Summary of 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 r e c o n s t r u c t i o n . Current s c i e n t i f i c evidence c l e a r l y reveals that breast reconstruction 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 prosthesis f o r post-mastectomy women. Because of recent advances in su r g i c a l techniques, t h i s surgery i s 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 reconstruction 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 of rec o n s t r u c t i v e surgery, neglecting to deal with the associated psychological concerns of breast r e c o n s t r u c t i o n . 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 of meeting the needs of t h i s patient population. The phenomenological approach was se l e c t e d to guide t h i s study because of 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 perspective. This methodology r e l i e s on pa r t i c i p a n t accounts which r e f l e c t the meaningful i n t e r a c t i o n of informants and researcher. The richness of the data i s enhanced 189 by the simultaneous data c o l l e c t i o n and an a l y s i s processes. This methodological 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 ad d i t i o n , the phenomenological perspective was co n s i s t e n t with nursing's focus on the value of the i n d i v i d u a l and his or her need fo 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 of 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 inf l u e n c e the breast reconstruction 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 topic area. L i t e r a t u r e r e l a t e d to decision-making was explored to as c e r t a i n i f i t would be helpful in 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 of semi-structured interviews with 16 women over a four-month period. A l l interviews were audiotaped and then subsequently t r a n s c r i b e d verbatim. The concurrent data c o l l e c t i o n and ana l y s i s ensured v a l i d a t i o n of emerging themes from the p a r t i c i p a n t accounts. These themes were examined for 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 in 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 in terms of the breast reconstruction decision-making process. 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 of t h i s experience i n terms of t h e i r own l i v e s . The women desc 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 to choose or refuse breast 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 of l o s s o f wholeness, search f o r wholeness, and reg a i n i n g of 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 . This lack of wholeness was evidenced i n decreased self-esteem and a perceived lack o f normalcy. A l l women who underwent breast 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 of discomfort, i t s lack of convenience, and i t s i n a b i l i t y to r e s t o r e f e e l i n g s of wholeness to them. This l o s s of wholeness acted as a c a t a l y s t that 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 of t h i s search. Some p a r t i c i p a n t s were informed of breast r e c o n s t r u c t i o n by heal 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 of sources. The r e g a i n i n g of 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 at how q u i c k l y t h e i r sense of normalcy and se l f - c o n c e p t were r e s t o r e d . One of the major b e n e f i t s was the new-found a b i l i t y to put the cancer experience behind them now 191 that they were not c o n s t a n t l y reminded of t h e i r breast 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 . Therefore, a key theme that emerged was the unique decision-making 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 account. One of 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 to make her d e c i s i o n . Weighing of consequences was an important p a r t o f the decision-making process and in 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 nature of 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 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 that i t appeared to diminish f e a r of 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 refused r e c o n s t r u c t i o n d i d not endow the p h y s i c i a n with such power and were unable to minimize these r i s k s . In f a c t , they f e l t t h at 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 of 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 to examining the f i n d i n g s of t h i s study i n terms of the cu 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 to e n r i c h the researcher's understanding o f these issues from a f e m i n i s t p e r s p e c t i v e . This 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 of 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 of the women's decision-making i n breast 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 diver g e n t p e r s p e c t i v e s represented by these two sources i n terms of women's needs i n breast r e c o n s t r u c t i o n 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 in t h i s study demonstrated a unique decision-making s t y l e when making a decison about breast r e c o n s t r u c t i o n . 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 of 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 breast 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 of breast 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 breast r e c o n s t r u c t i o n . 193 5. Among the women who chose breast r e c o n s t r u c t i o n , the pr 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 of i t s i n a b i l i t y to res t o r e wholeness. 6. The women who refused 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 to undergo r e c o n s t r u c t i o n . 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 of breast 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 breast 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 of 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 breast r e c o n s t r u c t i o n experienced the need to defend t h e i r d e c i s i o n . Implications f o r Nursing P r a c t i c e The f i n d i n g s of t h i s study suggest a number of 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 to post-mastectomy p a t i e n t s . These i m p l i c a t i o n s are 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 of 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 to be aware t h a t every post-mastectomy woman may be inv o l v e d i n the breast r e c o n s t r u c t i o n decision-making process a t any po 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 of decision-making 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 needs. Given that each woman has a unique decision-making s t y l e , i t i s important to thoroughly 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 to be examined. This assessment would address such questions as: 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 ? Does she favour more of an i n t u i t i v e approach? 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 of br e a s t r e c o n s t r u c t i o n . Because of 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 fu 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 to dispense and c l a r i f y information about breast r e c o n s t r u c t i o n . The f i n d i n g s of 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 surgery f o l l o w i n g mastectomy, p o s s i b l e complications 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 of the pos 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, rega r d l e s s of whether or not they r e q u i r e adjuvant treatment. A woman who has been f u l l y informed i s l i k e l y to f e e l more i n co 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 to be attuned to 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 acts as a c a t a l y s t f o r some women, compelling them to pursue breast r e c o n s t r u c t i o n immediately. As w e l l , they need to know th a t some women w i l l not respond i n i t i a l l y but 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 are made aware of 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 or not to seek out 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 to ask p a t i e n t s what they know about breast 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 explanation of breast r e c o n s t r u c t i o n to best meet the unique needs of each p a t i e n t . Even though many turn down the option o f breast r e c o n s t r u c t i o n , i t i s important f o r a woman to 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 of a nurse's a v a i l a b i l i t y f o r f u t u r e d i s c u s s i o n of br e a s t r e c o n s t r u c t i o n i f the p a t i e n t so d e s i r e s . Snyder (1984) suggests that nurses would enhance the e f f e c t i v e n e s s of 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 of 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 dec 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 influence 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 of her wholeness i s a valuable i n d i c a t o r of 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 of 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 of body-image, self-concept, and s e x u a l i t y . Therefore, these three topic areas must be explored in the nurse's assessment of a patient's perception of her wholeness. Such coping s t r a t e g i e s as avoiding looking at oneself in the mirror when undressed, continued apprehension regarding sexual intimacy, and a large degree of 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 patient's lack of wholeness. The a b i l i t y to carry out a non-threatening assessment of 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 of s e n s i t i v i t y on the part of the nurse. I t i s imperative that such an assessment i s done with empathy and res 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 to take the lea 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 to 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 of the women who underwent r e c o n s t r u c t i o n to c r i t i c i z e the inadequacy of a p r o s t h e s i s i n terms of 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 of 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 of a woman's experience with her p r o s t h e s i s cannot be underestimated in terms of her 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 . Women who continue to lack wholeness i n s p i t e o f the p r o s t h e s i s require a d d i t i o n a l support from nurses because of 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 required 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 to t h e i r p l a s t i c surgeon. Although i t i s important that 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 breast 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 to p a t i e n t s t h e i r r i g h t to competent, s e n s i t i v e medical c a r e . Nurses can give support to breast 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 the importance of e s t a b l i s h i n g rapport with the surgeon, and of seeking several c o n s u l t a t i o n s i f necessary. This process could 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 to 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 are l e s s l i k e l y to assume the t r a d i t i o n a l submissive r o l e and a more meaningful, c o n s t r u c t i v e 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 to defend t h e i r d e c i s i o n to s i g n i f i c a n t o t h e r s , the issue of negative a t t i t u d e s towards breast r e c o n s t r u c t i o n should be explored i n a supportive 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 of post-mastectomy women who consider breast r e c o n s t r u c t i o n . 199 Implications f o r Nursing Education The importance of educating nurses to understand the needs of post-mastectomy women who con 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. T h i s w i l l help students avoid 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 of t h e i r nursing 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 inc l u d e information on general p a t i e n t decision-making i n r e l a t i o n to health-care i s s u e s . 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 part o f the br 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 hig h l y r e l e v a n t f o r nursing education, f o r example, to address the t o p i c of 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 information 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 di s p e n s i n g information to breast 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 to 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 cannot be s t r e s s e d enough i n nursing education and i s best summed up by Harvey (1980) who c i t e s Grandstaff 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 of what your options are" (p. 102). The c o n c l u s i o n s of t h i s study a l s o d i r e c t nursing educators to provide theory p e r t a i n i n g to the t o p i c of 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 heal 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 of breast r e c o n s t r u c t i o n with i t s inherent r i s k s , but al 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 or refuse 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 majority of women who choose breast r e c o n s t r u c t i o n are " 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). This would help to d i s p e l the pr e v a l e n t bias which sees women who request breast r e c o n s t r u c t i o n as maladjusted i n some way and to ensure t h a t nurses are attuned to the re a l needs of t h i s p a t i e n t p o p u l a t i o n . According to the l i t e r a t u r e and the f i n d i n g s of t h i s study, nurses f r e q u e n t l y do not take advantage of t h e i r unique o p p o r t u n i t i e s to t a l k to post-mastectomy women. As a r e s u l t , c r i t i c a l issues 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, and s e x u a l i t y are neglected during the p r o v i s i o n of nursing care. Such avoidance behavior on the par t of nurses i s l i k e l y to 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 of rigo r o u s psychosocial 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 of 201 at l e a s t several months, nurses would be a l e r t e d to the 20% of 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 nursing care f o r post-mastectomy women in 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. Implications 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 a d d i t i o n a l r e s e a r c h . More information 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 to choose or refuse b r e a s t r e c o n s t r u c t i o n , to expand on the f i n d i n g s of 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 greater numbers of p a r t i c i p a n t s f o r the purpose of e l i c i t i n g a wider range o f experiences which w i l l enhance the richness and g e n e r a l i z a b i l i t y of the f i n d i n g s . C a r r o l l - J o h n s o n (1982) addresses the importance of research i n t h i s area by s t a t i n g : the r o l e of 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 to adjustment to the l o s s o f a br e a s t and the r o l e of breast 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 Ca r r o l l - J o h n s o n (1982) cla i m s , a d d i t i o n a l research i s needed to develop more r e l e v a n t , accurate, 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 useful f o r e v a l u a t i n g women's perception of 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 to i n v e s t i g a t e a group of women who decided to refuse the option of 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 erception o f t h e i r own wholeness? According to the 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 to 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 of women who a c t u a l l y undergo r e c o n s t r u c t i o n . The i s s u e of 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 context of wholeness. I t would be useful to conduct research i n t o the f a c t o r s t h a t determine whether post-mastectomy women per c e i v e t h e i r p r o s t h e s i s as an asset or a detriment i n r e g a i n i n g wholeness. Knowing the process that leads women to 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 of 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 of the decision-making process i n women who consider b r e a s t r e c o n s t r u c t i o n . Nursing research i s needed to 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 that 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 of i n t u i t i o n may not be amenable to s c i e n t i f i c s c r u t i n y , i t would be worthwhile to 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 p a t i e n t s . In view of the f a c t t h a t t h i s study and the ma j o r i t y o f studi e s reported i n the l i t e r a t u r e are r e t r o s p e c t i v e i n nature, i t would be useful to study women who are c u r r e n t l y i n the process of 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 to the decision-making process. The c a t a l y t i c r o l e that information plays i n decision-making r e q u i r e s i n v e s t i g a t i o n to e s t a b l i s h a c l e a r e r understanding of 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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Woods, N. F., & Woods, J . S. (1975). Human s e x u a l i t y i n health  and i l l n e s s . S t . Lou i s : C.V. Mosby. Zalon, J . (1978). I am whole again: 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. 2 1 4 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 nursing 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 r e c o n s t r u c t i o n . 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 at your convenience in 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 earned about breast r e c o n s t r u c t i o n , what you saw as the disadvantages and advantages in breast 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 refuse b r e a s t r e c o n s t r u c t i o n . 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 avoid the use of i d e n t i f y i n g names on the tape. You may refuse to answer any question during 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 exception of myself and my t h e s i s a d v i s o r s . 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. The tapes w i l l be erased when my t h e s i s i s completed. The purpose of r e c o r d i n g the interviews 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 p a r t i c i p a n t s . APPENDIX "B"  Sample Questions f o r I n i t i a l Interview 216 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 breast 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 breast 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 refuse r e c o n s t r u c t i o n ? 

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