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The meaning of the breast cancer/mastectomy experience Campbell, Sheila Harriet 1984

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THE  MEANING OF THE BREAST CANCER/MASTECTOMY EXPERIENCE  By  SHEILA HARRIET CAMPBELL B.A., D a l h o u s i e U n i v e r s i t y , 1958 M.A., D a l h o u s i e U n i v e r s i t y , 1962  A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE  REQUIREMENTS FOR THE DEGREE OF MASTER OF ARTS  in THE  FACULTY OF GRADUATE STUDIES  Department of C o u n s e l l i n g  We accept t h i s  t h e s i s as  to the r e q u i r e d  THE  Psychology  conforming  standard  UNIVERSITY OF BRITISH COLUMBIA  August, 1984  ®Sheila H a r % e t  Campbell,  1984  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 o f 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 it  f r e e l y a v a i l a b l e f o r reference  and study.  I further  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 t h e head o f my department o r by h i s o r her r e p r e s e n t a t i v e s .  It i s  understood t h a t copying o r 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 gain  s h a l l n o t be allowed without my  permission.  Department o f  C o u n s e l l i n g Psychology  The U n i v e r s i t y o f B r i t i s h 1956 Main Mall Vancouver, Canada V6T  1Y3  Date  1-6  (3/81)  August 31, 1984  Columbia  written  ABSTRACT  The  purpose of t h i s e x i s t e n t i a l - p h e n o m e n o l o g i c a l study was to  understand  the meaning of the b r e a s t cancer/mastectomy e x p e r i e n c e .  The  meaning d e s c r i b e d i n t h i s study was the s t r u c t u r e or common p a t t e r n underlying  the unique  experiences  f o r b r e a s t cancer a t l e a s t  of s i x women who had had mastectomies  two years e a r l i e r .  These women were my  co-researchers. The  assumptions of many d i f f e r e n t approaches to b r e a s t cancer and  mastectomy i n the l i t e r a t u r e were e x p l i c a t e d and t h e i r  limitations  indicated.  No p r e v i o u s e x p l o r a t i o n of the meaning of t h i s  was  My own assumptions about meaning were drawn out of my own  found.  experience  of b r e a s t cancer and mastectomy.  were based  on these assumptions.  co-researcher. detailed second  I n the f i r s t  account  experience  The i n t e r v i e w q u e s t i o n s  There were two i n t e r v i e w s w i t h each  s e t of i n t e r v i e w s each woman gave a  of her e x p e r i e n c e , which was t a p e - r e c o r d e d .  s e t of i n t e r v i e w s my c o - r e s e a r c h e r s v a l i d a t e d  I n the  the r e s u l t s  of the  analysis. The  analysis  of the t r a n s c r i p t s  a c c o r d i n g to the method used Phenomenological (1978).  of the taped i n t e r v i e w s was done  by C o l a i z z i  (1978) i n E x i s t e n t i a l -  A l t e r n a t i v e s f o r Psychology,  Forty-one  e d i t e d by V a l l e  themes were formulated and d e s c r i b e d ; these  were a s p e c t s of the b r e a s t cancer/mastectomy e x p e r i e n c e the women i n the study.  and K i n g themes  common to a l l of  On the b a s i s of the themes, an e x h a u s t i v e  iii  description  of t h i s e x p e r i e n c e was w r i t t e n ,  description  of the e s s e n t i a l core of the e x p e r i e n c e .  The  r e s u l t s show a c l e a r p a t t e r n  suffering, a pattern involved  as w e l l  of s p i r i t u a l  as a condensed  growth  through  remarkable i n i t s d e t a i l and symmetry.  Healing  a profound change i n the person through the d i s c o v e r y  meaning of her l i f e  as an i n d i v i d u a l and a human b e i n g .  My d e s c r i p t i o n gives  a more complete u n d e r s t a n d i n g of the b r e a s t  cancer/mastectomy e x p e r i e n c e than any p r e v i o u s approach. foundation f o r further research perspective  of the  of a s i m i l a r k i n d .  and an o r i e n t a t i o n f o r c o u n s e l l o r s  I t lays a  I t also provides a  of mastectomy  patients.  iv TABLE OF CONTENTS Page ABSTRACT  i i  TABLE OF CONTENTS  iv  LIST OF TABLES  viii  ACKNOWLEDGEMENTS  ix  DEDICATION  x  CHAPTER I .  INTRODUCTION  Purpose  1  of the Study  1  Overview  1  Significance  CHAPTER I I .  of the Study  .  REVIEW OF THE LITERATURE  Approaches  to B r e a s t Cancer and Mastectomy  M e d i c a l Views Assumptions  2  7 8 8 12  Rehabilitation Assumptions  View  13 14  P s y c h i a t r i c Approach Assumptions  15 18  The View of Reach to Recovery Assumptions  20 24  P s y c h o a n a l y t i c View Assumptions  25 28  The Standard Assumptions  30 31  of Adjustment  P s y c h o s o c i a l Approach Assumptions Cultural Anthropological Assumptions  33 36 Approach  38 40  V  Page  ;  Mastectomy as a Turning P o i n t Assumptions  41 42  Mastectomy as D e s p a i r Assumptions  43 45  C o g n i t i v e Approach Assumptions  46 48  Mastectomy as a C r i s i s Assumptions  to Grow On  49 50  Stages and S t y l e s i n the Cancer E x p e r i e n c e Assumptions Summary of Assumptions of Stage T h e o r i e s  51 54 66  Summary and C r i t i q u e of Assumptions on B r e a s t Cancer and Mastectomy  67  The Meaning  of I l l n e s s , S u f f e r i n g and H e a l i n g  72  The Experience of I l l n e s s and H e a l i n g Assumptions  73 77 80  The Journey of I n d i v i d u a t i o n Assumptions  81 84 87  E x i s t e n t i a l - H u m a n i s t i c Views Assumptions  87 88 91  S u f f e r i n g and H e a l i n g i n the Cancer E x p e r i e n c e Assumptions  Summary of Assumptions I l l n e s s and H e a l i n g  on the Meaning  of S u f f e r i n g ,  My Own E x p e r i e n c e of B r e a s t Cancer and Mastectomy My Assumptions  CHAPTER I I I . METHOD E x i s t e n t i a l - P h e n o r a e n o l o g i c a l Psychology  92 93 97 101  102 108 148  150 150  vi  Page Co-Researchers S e l e c t i o n of Co-Researchers Demographic I n f o r m a t i o n  153 154 155  Phenomenological  156  Interview  Procedure  158  A n a l y s i s and E x p l i c a t i o n  CHAPTER IV.  of Meaning  159  RESULTS  164  Interviews The I n i t i a l I n t e r v i e w The V a l i d a t i o n I n t e r v i e w From I n t e r v i e w i n g to A n a l y s i s : F o r m u l a t i o n of Themes  164 164 169 The Researcher's  Experience  176 179  Themes of the E x p e r i e n c e  184  Clusters  197  of Themes  E x h a u s t i v e D e s c r i p t i o n of the B r e a s t Cancer/Mastectomy Experience "  198  Condensed D e s c r i p t i o n of the B r e a s t Cancer/Mastectomy Experience  206  Portrayal  209  CHAPTER V.  of I n d i v i d u a l i t y  DISCUSSION  225  L i m i t a t i o n s of the Study  225  D i a l o g u e w i t h Myself  226  Theoretical  231  Implications  Implications  for Counselling  237  Implications  f o r Future Research  239  Summary and C o n c l u s i o n s  240  vii  Page REFERENCES  243  APPENDIXES A.  SIGNIFICANT  B.  PROTOCOLS  STATEMENTS  247 274  viii LIST OF TABLES Page Table  1  Table 2  Correspondence Between S u f f e r i n g Through the E x p e r i e n c e Significant  Statements  and Gains 228 248  ix  ACKNOWLEDGEMENTS  I would  l i k e to thank the f o l l o w i n g people f o r c o n t r i b u t i n g to t h i s  thesis: My c o - r e s e a r c h e r s  f o r t h e i r experiences  Dr. L a r r y Cochran, my s u p e r v i s o r , his  tough and s o l i d  and i n s i g h t s  f o r h i s f a i t h i n t h i s p r o j e c t and  criticism  Dr. Sharon Kahn and Dr. L o r e t t e Woolsey  for their  challenge and  encouragemen t Penny L u s z t i g f o r her c o n t i n u i n g moral My f r i e n d s and f a m i l y f o r t h e i r Lyall  f o r h i s love and support  interest  support and p r a c t i c a l  help  DEDICATION  I would l i k e thesis  to d e d i c a t e  to Barbara Roy,  found meaning experience.  who  i n her cancer Although  she d i d  not s u r v i v e cancer, her continues  this  life  to i n s p i r e many  and works, i n c l u d i n g  mine.  live  1  CHAPTER I  Introduction  Purpose o f the Study  What i s the meaning of the b r e a s t cancer/mastectomy T h i s q u e s t i o n seems important to  attempt  to answer.  f o r c o u n s e l l o r s to ask and f o r r e s e a r c h e r s  Mastectomy f o r b r e a s t cancer  and a v a s t body of l i t e r a t u r e has accumulated psychological effects.  experience?  i s a common s u r g e r y ,  on i t s p h y s i c a l and  Yet the meaning of the e x p e r i e n c e f o r p a t i e n t s  themselves  has not been understood.  understand  the meaning of the b r e a s t cancer/mastectomy e x p e r i e n c e .  e x i s t e n t i a l - p h e n o m e n o l o g i c a l approach  The purpose  of t h i s  study i s to An  has allowed me to i n v e s t i g a t e  b r e a s t cancer/mastectomy as a human e x p e r i e n c e i n a profound  and p r e c i s e  way.  Overview  The  first  chapter i n d i c a t e s the purpose chapter i s d i v i d e d  into  and s i g n i f i c a n c e of t h i s  study.  The second  three p a r t s .  reviews  the l i t e r a t u r e on b r e a s t cancer and mastectomy.  The f i r s t  part  Many d i f f e r e n t  approaches  to the e x p e r i e n c e are p r e s e n t e d .  approaches  are drawn o u t , and t h e i r l i m i t a t i o n s and c o n t r a d i c t i o n s are  indicated.  The next  p a r t of the second  The assumptions  chapter p r e s e n t s some  o f these  approaches  2  to the meaning of i l l n e s s ,  suffering  and h e a l i n g that a r e c o n g e n i a l w i t h  my own e x p e r i e n c e of b r e a s t cancer and mastectomy.  By e x p l i c a t i n g the  assumptions of these a u t h o r s , I am i n a b e t t e r p o s i t i o n to c l a r i f y my own assumptions and s e t them a s i d e i n the conduct  of t h i s r e s e a r c h .  final  of my own e x p e r i e n c e  p a r t o f the second  with b r e a s t cancer the meaning of t h i s The  third  phenomenological  chapter g i v e s an account  and mastectomy, f o l l o w e d by my own assumptions  and  chapter g i v e s a b r i e f  summary of the e x i s t e n t i a l -  approach to human e x p e r i e n c e and a d e t a i l e d i n this  study.  p r e s e n t s the r e s u l t s o f my a n a l y s i s , i n c l u d i n g  description  The f o u r t h a list  of themes  t h e i r d e s c r i p t i o n s , the e x h a u s t i v e d e s c r i p t i o n and the condensed  s t r u c t u r e or e s s e n t i a l core o f the b r e a s t cancer/mastectomy The  about  experience.  of the p a r t i c u l a r r e s e a r c h method used chapter  The  experience.  f o u r t h chapter ends w i t h a p o r t r a y a l o f i n d i v i d u a l i t y , which shows  how the common p a t t e r n or meaning of t h i s e x p e r i e n c e was r e f l e c t e d i n the i n d i v i d u a l  l i v e s of two of the women i n my study, who seemed on t h e  s u r f a c e to have had v e r y d i f f e r e n t e x p e r i e n c e s .  In the f i f t h chapter ray  d i a l o g u e with the r e s u l t s i s f o l l o w e d by a d i s c u s s i o n of i m p l i c a t i o n s f o r t h e o r y , r e s e a r c h and p r a c t i c e .  S i g n i f i c a n c e o f the Study  The  approach o f t h i s study i s d i f f e r e n t  from  that of any e x i s t i n g  s t u d i e s on b r e a s t cancer and mastectomy.  Although  there has been much  r e s e a r c h i n t h i s area from many d i f f e r e n t  p e r s p e c t i v e s , few attempts  3  have been made to study the b r e a s t cancer/mastectomy e x p e r i e n c e from p a t i e n t ' s p o i n t of view (Rosser, 1981). reject  the  These i n s i d e approaches e i t h e r  the p o s s i b i l i t y t h a t p e r s o n a l meaning can be found  or imply the p o s s i b i l i t y of meaning without  (Ervin,  exploring i t (Quint,  1973) 1963,  1964). Most of the l i t e r a t u r e approaches the p a t i e n t ' s experience outside.  The  from  the  p a t i e n t i s seen, f o r example, as someone whose s t r e s s  needs to be reduced  or overcome so that she can r e t u r n to normal  ( H o l l a n d & M a s t r o v i t o , 1980); o r as someone w i t h a number of p s y c h o l o g i c a l and  social  problems r e q u i r i n g  a c o u n s e l l o r ( S c h a i n , 1976). experience  i s the assumption  readjustment taken  to n o r m a l i t y .  f o r granted.  c o n f u s i o n s and  s o l u t i o n s , with the help of  U n d e r l y i n g most approaches to the t h a t r e c o v e r y means an adjustment  What t h i s means i s , i n most c a s e s ,  Ray's study (1977) i l l u s t r a t e s  contradictions implicit  or simply  some of the  i n the standard  of adjustment  as  L a s s e r (1972) g i v e s the most e x p l i c i t view of what readjustment  to  health.  n o r m a l i t y means. cancer  to L a s s e r , a woman has  recovered  from b r e a s t  and mastectomy i f she remains unchanged as a person while moving  i n t o the f u t u r e . behind  According  Such a p a t i e n t has been able to put the cancer  surgery  her as though n o t h i n g of g r e a t s i g n i f i c a n c e has happened.  keeps busy and  She  attends to the needs of o t h e r s r a t h e r than f e e l i n g  for herself.  She  i s the same woman she always was,  grown without  changing  i n any fundamental way.  sorry  o n l y b e t t e r ; she  L a s s e r expresses  view of the Reach to Recovery v o l u n t e e r o r g a n i z a t i o n , which she  has  the started,  4  and  which i s now p a r t of the American Cancer S o c i e t y ' s  program, used by d o c t o r s of b r e a s t  cancer  to f a c i l i t a t e  the s o c i a l  rehabilitation  and emotional  recovery  patients.  Though views o f r e c o v e r y  differ  i n s p e c i f i c ways, the standard of  adjustment u n d e r l i e s the p s y c h i a t r i c , p s y c h o s o c i a l and p s y c h o a n a l y t i c approaches to b r e a s t cancer recovery  from cancer.  and mastectomy, as w e l l as stage  theories of  From the p e r s p e c t i v e of h e a l t h as adjustment, any  change i n a woman who undergoes a mastectomy f o r b r e a s t cancer problem  to be solved  becomes a  or managed, a s t r e s s to be e l i m i n a t e d or an emotion  to be r e l e a s e d , r a t h e r than an aspect meaning to be explored  o f a human experience  with a  and understood.  While K l e i n (1971) sees r e c o v e r y  as i n t e g r a t i o n r a t h e r  than  adjustment, she d e f i n e s the tasks of h e a l i n g i n an e x t e r n a l way.  They  are seen as the same f o r a l l women.  Attempts i n the l i t e r a t u r e to  explain  and mastectomy a r e a l s o e x t e r n a l l y  the meaning of b r e a s t cancer  imposed. breast  For example, Renneker and C u t l e r (1952) see the meaning of the  l o s s as the same f o r a l l women; i t s i g n i f i e s an end to the b a s i c  feminine  r o l e of s e x u a l i t y and motherhood.  T h i s "loss matters more to  normal younger women than to normal o l d e r ones, who are more concerned about s u r v i v i n g cancer. the b r e a s t being  patient.  In a r e c e n t  important  (1976) d i s c u s s e s the s o c i a l  l o s s , and Peters-Golden  a cancer  recovery  Schain  adaptation"  (1982) d i s c u s s e s the s o c i a l  stigma of  P e r s o n a l meanings, however, a r e not e x p l o r e d .  a r t i c l e T a y l o r (1983) presents  from b r e a s t cancer. aspect  stigma o f  a c o g n i t i v e theory of  She d e s c r i b e s a search  f o r meaning as an  of r e c o v e r y , which she i n t e r p r e t s as " c o g n i t i v e  o r "readjustment" ( p . 1161) o f the p a t i e n t ' s t h i n k i n g .  5  T a y l o r r e g a r d s the p a t i e n t ' s p e r s o n a l meaning as based (p. 1161).  By i l l u s i o n  she means p o s i t i v e b e l i e f s  or a p o s i t i v e i n t e r p r e t a t i o n o f f a c t s .  (p.  unsupported by f a c t s  She concludes that  r e c o v e r y from tragedy r e s t s on i l l u s i o n " impeding  on " i l l u s i o n "  "successful  ( p . 1161) and that " f a r from  adjustment, i l l u s i o n may be e s s e n t i a l  f o r adequate c o p i n g "  1171). T a y l o r ' s study i n d i c a t e s the importance of the r e s e a r c h e r ' s s t a n c e  in  s t u d y i n g the meaning o f a human e x p e r i e n c e as w e l l as the c o n f u s i o n  t h a t can r e s u l t when t h i s s t a n c e i s not made e x p l i c i t . implicit find.  Taylor's  p e r s p e c t i v e d i s c o u n t s the v e r y meaning she has s e t out t o  Her s u b j e c t s a r e approached  an e x t e r n a l way.  as o b j e c t s of r e s e a r c h and hence i n  The gap between p e r s o n a l meaning and o b j e c t i v e  i s apparent throughout her a r t i c l e . " s u b j e c t i v e " cannot be r e a l  Her assumption  reality  i s that a n y t h i n g  and that the meaning of the p a t i e n t ' s  experience i s s u b j e c t i v e . Such a dichotomy  between s u b j e c t and o b j e c t w i l l  exist  i n any  approach to the e x p e r i e n c e o f b r e a s t cancer and mastectomy by traditional  scientific  psychology.  As long as t h i s gap e x i s t s , the  meaning of the e x p e r i e n c e w i l l not be u n d e r s t o o d . Rosser (1981) e x p h a s i z e s the need  f o r r e s e a r c h i n t o the meaning of  the b r e a s t cancer e x p e r i e n c e and i t s treatment f o r p a t i e n t s .  Such  r e s e a r c h , she says, must seek to understand through l i s t e n i n g and recording  in detail  the statements t h a t women make about  experiences i n t h i s area. about  Only i n t h i s way can unfounded  the e x p e r i e n c e be c h a l l e n g e d .  their assumptions  Rosser i m p l i e s that such r e s e a r c h  6  must overcome the gap between s u b j e c t and o b j e c t , but she does not i n d i c a t e how t h i s can be done. My own approach to the b r e a s t cancer/mastectomy e x p e r i e n c e existential-phenomenological calls  i t , tries  one.  T h i s "human s c i e n c e " as G i o r g i (1970)  to understand human l i f e  i n a way that i s as f r e e as  p o s s i b l e of our c u l t u r a l p r e s u p p o s i t i o n s  such as the d u a l i s t i c  between s u b j e c t and o b j e c t ( V a l l e & K i n g , makes h i s or her p e r s p e c t i v e e x p l i c i t the meaning of the experience  and draws out assumptions about  that w i l l  on t h e i r e x p e r i e n c e s ,  accounts o f t h e i r  be i n v e s t i g a t e d .  a n a l y s i s with  third  chapter  1970, p. 189; pp.  psychology.  T h i s approach enabled  me to  the s t r u c t u r e o r common p a t t e r n or meaning of the b r e a s t as i t was l i v e d by the s i x women i n t h i s  to understand what r e c o v e r y means to these  a foundation human  and through s h a r i n g the r e s u l t s o f the  of t h i s t h e s i s g i v e s a much more d e t a i l e d account  cancer/mastectomy experience study;  as equals and  1978, p. 15).  of e x i s t e n t i a l - p h e n o m e n o l o g i c a l describe  Research i s  r e f l e c t i o n on t h e i r  them f o r v a l i d a t i o n of meaning ( G i o r g i ,  203-205; V a l l e & King, The  through d i s c i p l i n e d  experiences,  split  1978, p. 7 ) . The r e s e a r c h e r  conducted through d i a l o g u i n g with other human beings experts  i s an  women; and to p r o v i d e  f o r the kind of r e s e a r c h t h a t i s needed i n t h i s area o f  experience.  7  CHAPTER I I  Review of the L i t e r a t u r e  The  first  p a r t of t h i s l i t e r a t u r e review aims to e x p l i c a t e the  assumptions of v a r i o u s experience. i s given,  approaches to the b r e a s t  A summary of one o r more s t u d i e s i l l u s t r a t i n g  followed  by assumptions contained  p a t i e n t ' s e x p e r i e n c e of b r e a s t presented  include medical,  psychoanalytic  adjustment theory  cancer and mastectomy.  Positions  r e h a b i l i t a t i o n , psychiatric, psychosocial,  anthropology, c r i s i s  counselling  and the  that u n d e r l i e s most of the above p o s i t i o n s ; and  These l a s t  mastectomy as d e s p a i r .  and r e c o v e r y .  s t u d i e s view mastectomy as a t u r n i n g Each of these t h i r t e e n p o s i t i o n s  assumptions about the b r e a s t illness  i n that p o s i t i o n about the  the few attempts that have been made to study the e x p e r i e n c e  from the i n s i d e . and  each p o s i t i o n  and c o g n i t i v e views; the views o f Reach to Recovery,  stage t h e o r i e s , c u l t u r a l  finally,  cancer/mastectomy  point  contains  cancer/mastectomy p a t i e n t ' s e x p e r i e n c e of  These assumptions are brought  together  in a final  summary and c r i t i q u e , which p o i n t s out gaps and c o n t r a d i c t i o n s i n the views of the e x p e r i e n c e . To  h e l p me c l a r i f y my own assumptions, the second p a r t o f the  l i t e r a t u r e review presents suffering  and h e a l i n g  cancer and mastectomy. explicated  some approaches to the meaning of i l l n e s s ,  that a r e c o n g e n i a l  w i t h my e x p e r i e n c e o f breast  The assumptions o f these p o s i t i o n s are  and brought together  i n a summary.  Finally,  I present  an  8  account  of my own e x p e r i e n c e o f b r e a s t cancer and mastectomy, f o l l o w e d  by my own assumptions  about  the meaning of t h i s  Approaches t o B r e a s t Cancer  M e d i c a l Views o f B r e a s t Cancer  Giuliano cancer  experience.  and Mastectomy  and Mastectomy  (1984) summarizes the c u r r e n t m e d i c a l view of b r e a s t  and mastectomy.  The b r e a s t i s the most common s i t e o f cancer i n  women and the l e a d i n g cause o f cancer death among American women. the l e a d i n g cause o f death i n women i n t h e i r f r e q u e n t l y i n women over 30. she  The l o n g e r a women l i v e s ,  i s to develop b r e a s t c a n c e r .  expected  early f o r t i e s .  1 out of every  It i s  I t occurs  the more l i k e l y  11 American women i s  to develop b r e a s t cancer d u r i n g her l i f e t i m e (p. 4 2 9 ) .  The most common symptom of b r e a s t cancer  i s a lump i n the b r e a s t ,  usually painless.  About 90% of these lumps a r e d i s c o v e r e d by women  themselves.  l e s s f r e q u e n t symptoms i n c l u d e b r e a s t p a i n , n i p p l e  Other  d i s c h a r g e , d e t r a c t i o n , enlargement  or i t c h i n g  redness, g e n e r a l i z e d hardness, enlargement Through mammography or X-ray  examination  or shrinking  breast about  Some cancers can be  two years b e f o r e a p a l p a b l e lump appears.  not a s u b s t i t u t e tissue  f o r b i o p s y , the removal  f o r the purpose  treatment, cancer  But mammography i s  and m i c r o s c o p i c examination o f  of diagnosis.  s p e c i a l i s t s determine  extent or stage o f the d i s e a s e .  of the b r e a s t .  o f the b r e a s t , b r e a s t cancer  can be d e t e c t e d b e f o r e any symptoms appear. identified  of the n i p p l e ; and  Before a d e c i s i o n  i s made  the type o f cancer and the  9  Mastectomy i s a s u r g i c a l treatment v a r i o u s types of mastectomy. medical was  treatment  developed  f o r breast cancer.  There are  Until  about ten years ago, the standard  f o r b r e a s t cancer  was the r a d i c a l mastectomy, which  by H a l s t e d of Johns Hopkins i n the 1880's.  T h i s type o f  s u r g e r y removes the b r e a s t , the p e c t o r a l muscles and the lymph nodes o f the a x i l l a or armpit.  Most p a t i e n t s with p o t e n t i a l l y c u r a b l e b r e a s t  cancer  now have a m o d i f i e d  breast  and a x i l l a r y lymph nodes.  equal  r a d i c a l mastectomy, which removes o n l y the I t i s much l e s s d i s f i g u r i n g  r e s u l t s i n terms o f f i v e - y e a r s u r v i v a l  or t o t a l mastectomy removes o n l y the b r e a s t .  rates, ( p . 435).  A simple  A segmental or p a r t i a l  mastectomy removes o n l y the tumour and surrounding says  and g i v e s  tissues.  Giuliano  that segmental mastectomy with removal o f a x i l l a r y nodes and  combined with r a d i o t h e r a p y should be an o p t i o n f o r women with tumours. still  But the p a t i e n t should be c a u t i o n e d  r e l a t i v e l y new and t h a t long-term  that such  r e c e i v e chemotherapy  treatment i s  r e s u l t s are s t i l l  Women whose a x i l l a r y nodes i n d i c a t e the presence  small  unknown.  of cancer may a l s o  treatment.  A few days a f t e r a r a d i c a l o r m o d i f i e d r a d i c a l , a woman should be encouraged  to use her a f f e c t e d  arm and s h o u l d e r .  should  have a f u l l  breaks  i n the s k i n o f her hand and arm on the s u r g i c a l  infection. she  should  range of arm motion.  A f t e r two weeks she  Her morale w i l l  life.  to avoid  s i d e to prevent  be improved by a temporary p r o s t h e s i s , and  r e c e i v e i n f o r m a t i o n about a permanent d e v i c e and about b r e a s t  reconstruction, i f this i s a r e a l i s t i c After  She should c o n t i n u e  possibility  for her.  surgery the p a t i e n t should have f o l l o w - u p examinations f o r  She should  examine her remaining  b r e a s t monthly and have  annual  10  mammograms, as metastases  or areas of spread of cancer may appear as  long as 15 years a f t e r a mastectomy. ("cure"  The standard o f success i n s u r g e r y  f o r b r e a s t cancer) i s g e n e r a l l y expressed  survival rates. cancer w i l l  But G i u l i a n o  i n terms of f i v e - y e a r  says "Most p a t i e n t s who develop b r e a s t  u l t i m a t e l y d i e of b r e a s t c a n c e r . . . . F i v e - y e a r s t a t i s t i c s  do not u l t i m a t e l y r e f l e c t  the f i n a l  outcome of therapy" ( p . 4 3 8 ) .  There has been much c o n t r o v e r s y w i t h i n the m e d i c a l p r o f e s s i o n the v a l u e of mastectomy as a treatment f o r example, argues  f o r breast cancer.  that s i n c e mastectomies  Cope  about  (1977),  have not succeeded i n  r e d u c i n g the m o r t a l i t y r a t e from b r e a s t c a n c e r , they are not worth t h e resulting mutilation. defend least will  O t h e r s , f o r example, Hayward (1981), s t a u n c h l y  some form of r a d i c a l mastectomy as the o n l y s a f e procedure, at f o r another decade, when c l i n i c a l  t r i a l s w i t h a l t e r n a t i v e methods  provide d e f i n i t i v e information. A traditional  a t t i t u d e to mastectomy i s expressed by Watson (1966),  who sees the c o n t r o v e r s y over treatment methods as f r i v o l o u s light  of the importance  of saving l i v e s :  i n the  " P r o t a g o n i s t s of one o r other  treatment m o d a l i t y tend to excess i n v o c i f e r a t i o n , so that we a r e f r e q u e n t l y amazed at the t h e r a p e u t i c p a s s i o n s aroused  by what i s , i n  s p i t e o f modern g l a m o r i z a t i o n , an a f f l i c t i o n of a s u p e r f i c i a l disposable u t i l i t a r i a n  easily  appendage" ( p . 548). He b e l i e v e s that the  p h y s i c a l handicaps of r a d i c a l mastectomy a r e g r e a t l y overemphasized, and that  the concern about  dangerous. them about  p s y c h o l o g i c a l e f f e c t s i s unnecessary  Women are not upset by mastectomies their  feelings:  and even  u n l e s s people t a l k t o  11  If  w e l l - i n t e n t i o n e d thorough i n v e s t i g a t i o n s as to the a t t i t u d e s and  r e a c t i o n s of the p a t i e n t p r i o r  t o , and  conducted, undoubtedly evidence f r e q u e n t l y be m a n i f e s t .  after  the o p e r a t i o n  of p s y c h o l o g i c  Such evidence,  trauma  are  will  however, w i l l  u s u a l l y have  been produced by the i n q u i r y r a t h e r than d i s c l o s e d by i t . adoption and  of a c a s u a l a t t i t u d e by the d o c t o r before  throughout  eliminating The  follow-up  these  untoward and  t r a d i t i o n a l medical  the cancer  examinations w i l l go  from s p r e a d i n g .  occurs  tumour growth i s c o n f i n e d followed  by r a d i c a l  unnecessary o c c u r r e n c e s ,  stop  cancer  Canellos  (1980) p o i n t  o n l y then to d i s t a n t organs, and  to the b r e a s t .  of b r e a s t  cancer  Baura (1977) says that cancer  localized  d i s e a s e but  breast  cancer  diagnosis  i s changing. systemic;  i n some p a t i e n t s .  p a t i e n t s the d i s e a s e has  surgery  radiotherapy  (Lewison, 1980,  complemented by p.  t h i s view  i s not  a  Basco (1981) says t h a t i n most a l r e a d y spread  Thus t h e r e i s a d e f i n i t e  conservative  But  i t i s not a s i n g l e homogeneous e n t i t y ,  of d i f f e r e n t d i s e a s e s .  i s established.  i n which  or mastectomy with r a d i a t i o n would at l e a s t  a multitude  that  Accordingly, early detection  permanently remove the cancer,  but  out,  spreads i n an o r d e r l y manner from  s e v e r a l months to s e v e r a l years  surgery  toward  view assumes that a mastectomy w i l l As Henderson and  after  a long way  557)  to r e g i o n a l lymph nodes and  this, spreading  operation  (p.  t h i s view assumes that b r e a s t breast  the  The  adjuvant  by the  trend  time  the  toward more  chemotherapy and/or  863).  Lewison (1980) speaks with enthusiasm about changing concepts of breast  cancer  and  i t s treatment, i n c l u d i n g the trend  toward more  12  c o n s e r v a t i v e s u r g e r y and the concern w i t h q u a l i t y as w e l l as q u a n t i t y of life  f o r the p a t i e n t .  of  cosmetic concerns  is  an important  D o c t o r s , he says, a r e now aware of the importance f o r a woman; b r e a s t r e c o n s t r u c t i o n where s u i t a b l e  part of t o t a l  treatment.  However, Lewison  does not  approve o f "unwise laws as w e l l as u n q u a l i f i e d d e c i s i o n s by the p a t i e n t " (p.  863).  He i s r e f e r r i n g  specifically  Massachusetts,  requiring  informed  a l t e r n a t i v e medical  about  to the p a t i e n t s '  rights b i l l i n  t h a t a l l b r e a s t cancer p a t i e n t s be f u l l y treatments.  He says t h i s i s t h e  p r i c e t h a t i s paid f o r freedom of c h o i c e and the democratic Only  process.  s p e c i a l i s t s , he b e l i e v e s , have the knowledge that i s n e c e s s a r y f o r  proper m e d i c a l d e c i s i o n s about  treatment  Other d o c t o r s , f o r example, C r i l e important  f o r breast cancer.  (1974), b e l i e v e t h a t i t i s  f o r a woman to be aware o f the v a r i o u s methods o f t r e a t i n g  b r e a s t cancer so that she can d i s c u s s them i n t e l l i g e n t l y with her doctor.  Together  acceptable  they can d e c i d e on a method of treatment  that i s  to them b o t h .  Assumptions  B r e a s t cancer i s a p h y s i c a l d i s e a s e that Without  a p p r o p r i a t e m e d i c a l treatment, she w i l l d i e .  mastectomy l o s e s her b r e a s t (and perhaps to  t h r e a t e n s a woman's l i f e .  save her l i f e .  A woman who has a  a l s o her chest muscle) i n o r d e r  Depending on the spread of the c a n c e r , she may a l s o  have r a d i a t i o n o r chemotherapy to save h e r l i f e . A woman's b r e a s t i s n o t a v i t a l threat  to her p h y s i c a l h e a l t h .  organ;  thus i t s removal  I t need not be a t h r e a t  i s not a  to her e m o t i o n a l  13  health.  A p r o s t h e s i s or breast r e c o n s t r u c t i o n w i l l  appearance a f t e r  s u r g e r y , as w e l l as her morale.  Recovery from a mastectomy i s p h y s i c a l . healed.  She has f u l l  wearing a replacement infection  use of her a f f e c t e d f o r her b r e a s t .  Recovery from b r e a s t cancer  arm and shoulder  A woman who c o n t i n u e s  a r e c u r r e n c e of cancer  cured.  She has no guarantee of a c u r e .  cancer.  and i s  She need o n l y be c a r e f u l  to avoid  side.  i s physical.  without  of  The p a t i e n t ' s i n c i s i o n has  i n the arm and hand on the s u r g i c a l  survival rates.  improve her  I t i s d e f i n e d i n terms of  to s u r v i v e a f t e r  five  years  has r e c o v e r e d , but she has n o t been She can s t i l l  F o l l o w i n g a mastectomy, she w i l l  have a r e c u r r e n c e  be a cancer  p a t i e n t f o r the  r e s t of her l i f e . Depending on the a t t i t u d e o f her d o c t o r , a woman may or may not be involved for  i n making the d e c i s i o n as to the type of s u r g e r y  breast  she w i l l  have  cancer.  R e h a b i l i t a t i o n View o f B r e a s t Cancer and Mastectomy  Burdick  ( 1 9 7 5 ) , a surgeon,  s e t s down p r i n c i p l e s and g o a l s f o r the  r e h a b i l i t a t i o n o f the b r e a s t cancer "is  patient.  The g e n e r a l g o a l , he says,  to r e s t o r e p a t i e n t s to a normal o r as near-normal s t a t e as  possible" (p. 6 4 5 ) . He  d i s c u s s e s four main c a t e g o r i e s o f r e h a b i l i t a t i o n .  categories—functional similar  and p h y s i c a l o r cosmetic  The f i r s t two  rehabilitation—are  to G i u l i a n o ' s view of r e c o v e r y from a mastectomy.  Normal  14  functioning has been restored to the woman's hand, arm the surgical side, and  and  shoulder on  she has a normal, well-groomed appearance.  The  goal of the third category, employment and vocational r e h a b i l i t a t i o n , i to return the patient to her previous force. may  a c t i v i t y at home or in the work  "While a variable degree of discomfort  or swelling in the  arm  p e r s i s t , these symptoms generally are not d i s a b l i n g , and most  mastectomy patients w i l l be able to return to f u l l previous a c t i v i t y " (p. 646).  High survival rates indicate that a woman can have  a prolonged productive realize  functional  period after a mastectomy, and employers should  this.  The goal of the fourth category, sociopsychological  rehabilitation  i s to give her support and encouragement and reduce her anxiety so that she w i l l return more rapidly to her d a i l y l i f e .  Burdick stresses the  importance of. the other members of the patient's health care nurse, s o c i a l worker and Reach to Recovery v o l u n t e e r — i n this aspect of her r e h a b i l i t a t i o n .  She  team—the  facilitating  should be allowed to express he  feelings and have them accepted as natural.  Each member of the team  should approach her with the attitude "This patient has a future" (p. 648).  Assumptions  Recovery from breast cancer and mastectomy means returning to normal.  A woman who  natural-looking.  has recovered  i s a t t r a c t i v e , well-groomed and  She has f u l l use of her arm on the surgical side  15  and  i s working up to her  her  home.  keep her  Any  pain she  She  circumstances, emotionally  has  and  f e e l s as a r e s u l t of her  overcome her  has  returned  a n x i e t y , which was  not  n a t u r a l i n . the She  is  fully  to her  past  l e v e l of f u n c t i o n i n g can g i v e her hope  future.  Holland  and  Mastrovito  Mastectomy  (1980), both p s y c h i a t r i s t s , o u t l i n e f a c t o r s  t h a t c o n t r i b u t e to a good or poor p s y c h o l o g i c cancer.  The  Psychosocial  two  cancer  adaptation  main groups of f a c t o r s are medical  f a c t o r s c o n s i s t of the c u l t u r a l  p a t t e r n s of coping  with  and  context,  o c c u r s , and  s i d e - e f f e c t s of adjuvant  to b r e a s t psychosocial.  the  patient's  s t r e s s , the p o i n t i n her l i f e c y c l e her  support  system.  Medical  symptoms, s i t e of tumour, stage of the d i s e a s e , extent  at which  factors include of the  surgery,  treatment, a v a i l a b i l i t y of prostheses  b r e a s t r e c o n s t r u c t i o n , and team.  outside  surgery need  to normal e m o t i o n a l l y .  P s y c h i a t r i c Approach to B r e a s t Cancer and  breast  i n her j o b  stable.  Returning the  still  c a p a c i t y at home and  from making a c o n t r i b u t i o n as a r e s p o n s i b l e , p r o d u c t i v e member  of s o c i e t y .  for  full  p s y c h o l o g i c a l management by  Each f a c t o r can be p o s i t i v e or n e g a t i v e ;  s t r e s s t h a t a p a t i e n t f a c e s or add  i t can  to her r e s o u r c e s  the h e a l t h increase  " P s y c h o l o g i c a l i n t e r v e n t i o n s are aimed at a l t e r i n g  of these  f a c t o r s i n s p e c i f i c ways" (p. 1051).  temporary p s y c h o l o g i c a l d i s t r e s s .  But  care  the  f o r overcoming  stress.  Most women can respond to the s t r e s s of b r e a s t  and  one  surgery w i t h  or more  only  some women have extreme s t r e s s  16  r e a c t i o n s as a r e s u l t of one n e g a t i v e f a c t o r or a combination or accumulation  of several negative f a c t o r s .  the range o f p s y c h i a t r i c  syndromes seen  "These responses  commonly i n cancer" ( p . 1047).  There are two main types of p s y c h i a t r i c responses  syndromes.  o r a mixture  o f both.  Stress  They a r e c h a r a c t e r i z e d by a n x i e t y , d e p r e s s i o n , The p a t i e n t w i l l  her r o u t i n e d a i l y  weight l o s s . occur  syndromes.  o c c u r r i n g around the time of s u r g e r y a r e c a l l e d p e r i o p e r a t i v e  psychiatric