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The cultural construction of breast cancer Mears, Bronwen Jane 1997

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THE CULTURAL CONSTRUCTION OF BREAST CANCER by BRONWEN JANE MEARS B.A., Simon F r a s e r U n i v e r s i t y , 1981 M.H.Sc, U n i v e r s i t y o f Toronto, 1984  A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY in THE FACULTY OF GRADUATE STUDIES  Department o f Anthropology and S o c i o l o g y We accept t h i s t h e s i s as conforming t o t h e r e q u i r e d standard  UNIVERSITY OF BRITISH COLUMBIA February 1997 (g) Bronwen Jane Mears, 1997  In presenting this thesis in partial fulfilment  of the  requirements for an advanced  degree at the University of British Columbia, I agree that the Library shall make it freely available .for reference and study. I further agree that permission for extensive copying of this thesis for • scholarly purposes may be granted by the head of my department  or  by  his or  her  representatives.  It  is  understood that  copying or  publication of this thesis for financial gain shall not be allowed without my written permission.  ••  Department of The University of British Columbia Vancouver, Canada  Date ,  DE-6 (2/88)  c7  •  ,  11  Abstract  T h i s t h e s i s e x p l o r e s t h e c u l t u r a l c o n s t r u c t i o n o f women's experiences  with b r e a s t cancer  A f t e r completing reformulate  i n Vancouver, B r i t i s h  Columbia.  treatment f o r b r e a s t cancer women must  t h e i r personal biographies t o include the diagnosis  and treatment.  This reformulation includes the reconstruction of  s e l f , both i d e n t i t y and body, and o f b i o g r a p h i c a l time and takes p l a c e w i t h i n a s o c i a l context.  In t h i s t h e s i s I e x p l o r e t h e  c u l t u r a l frameworks t h a t guide these r e f o r m u l a t i o n s .  I refer to  these as b r e a s t cancer n a r r a t i v e s . I interviewed b r e a s t cancer.  32 women who have completed treatment f o r  There a r e two s e t s o f data:  one s e t o f 2 9  c o l l e c t e d i n s i n g l e i n t e r v i e w s , and one s e t o f t h r e e over m u l t i p l e i n t e r v i e w s .  collected  I analyze t h e i n t e r v i e w s l o o k i n g f o r  common themes and s t r u c t u r e s from which I c o n s t r u c t e d  breast  cancer n a r r a t i v e s . In Canadian s o c i e t y , cancer has been commonly p o r t r a y e d as a "death sentence". transform  Recently,  t h e r e has been an attempt t o  t h i s p o r t r a y a l o f cancer t o one o f a d i s e a s e which can  be s u r v i v e d .  The b r e a s t cancer n a r r a t i v e s i n c l u d e both  p o r t r a y a l s o f cancer,  r e s u l t i n g i n an ambiguity about s u r v i v a l .  T h i s ambiguity i s r e s o l v e d by c o n s t r u c t i n g a v i a b l e d i s c o u r s e o f hope f o r t h e f u t u r e . During t h e process  o f d i a g n o s i s and treatment t h e  p a r t i c i p a n t s l e a r n a d i s c o u r s e o f hope which i s informed by biomedical  c u l t u r e and focuses on s u c c e s s f u l treatment.  However,  I l l  once treatment i s complete,  the p a r t i c i p a n t s  are faced w i t h  c h a l l e n g e s t o t h e i r c o n s t r u c t i o n of hope, stemming from belief  t h a t cancer i s a t e r m i n a l i l l n e s s .  the  To meet these  c h a l l e n g e s they modify t h e i r d i s c o u r s e of hope. I  i d e n t i f y four c u l t u r a l  schema used by p a r t i c i p a n t s  reformulate t h e i r personal biographies.  These schema  concepts of what may have caused the cancer and the d i s c o u r s e of hope. potential for  This m u l t i p l i c i t y  link  evolving  of schema leave  the  conflict.  As a r e s u l t  of the m u l t i p l e  schema and m o d i f i c a t i o n s t o  d i s c o u r s e of hope the c o n s t r u c t i o n s of b r e a s t cancer are Therefore  to  t h e r e are m u l t i p l e  the  diverse.  and c o n f l i c t i n g c o n s t r u c t i o n s of  b r e a s t cancer i n Canadian S o c i e t y .  T h i s i s an important  c o n s i d e r a t i o n when d e v e l o p i n g s e r v i c e s f o r women who have had a d i a g n o s i s of b r e a s t  cancer.  iv T A B L E  O F  C O N T E N T S  Abstract  ii  L i s t of T a b l e s  v  Acknowledgements  vi  Chapter I - I n t r o d u c t i o n  1  Chapter II - Development of a T h e o r e t i c a l P e r s p e c t i v e . . . . A. N a r r a t i n g I l l n e s s 1. I l l n e s s as L i v e d Experience 2. N a r r a t i v e s and N a r r a t i v e Thought 3. I l l n e s s N a r r a t i v e s a . D i s r u p t i o n and R e p a i r b. The S e l f , the Body and B i o g r a p h i c a l Time . c . S o c i a l Context of I l l n e s s N a r r a t i v e s . . . B. C u l t u r a l C o n s t r u c t i o n of Cancer 1. Cancer Metaphors a . C o n s t r u c t i o n of a D i s c o u r s e of Hope . . . . b. The Causes of Cancer c . U n c e r t a i n t y and the Future C. C o n c l u s i o n .  8 8 8 13 15 16 16 21 24 27 29 31 37 38  Chapter III  40  - Research Methods  Chapter A. B. C.  IV - Background Information Breast Cancer S t a t i s t i c s S t a g i n g of Breast Cancer Tumours H e a l t h S e r v i c e s A v a i l a b l e t o Women Who Have Had a D i a g n o s i s of Breast Cancer  Chapter of A. B. C.  V - Narratives Breast Cancer Anne Rebecca Conclusion  Chapter A. B. C.  of L i v i n g With Having Had a D i a g n o s i s  VI - The S t o r y of D i a g n o s i s and Treatment D i s c o v e r i n g Something i s Wrong Being Diagnosed w i t h Breast Cancer Now You Have Cancer: making d e c i s i o n s about treatment 1. Surgery 2. Other Treatments D. Going through Treatment 1. T a l k i n g about Treatment 2. E v a l u a t i n g Treatment  49 49 52 54 57 58 97 128 131 143 144 152 152 158 162 163 169  V  E . Stopping Treatment and G e t t i n g on w i t h L i f e 1. Completing A c t i v e Treatment . . . 2. A t t e n d i n g Regular Checkups . 3. L i v i n g w i t h the P h y s i c a l Consequences of Having had a D i a g n o s i s of Breast Cancer F. C o n c l u s i o n  177 177 178 182 188  Chapter VII - Schemata f o r C o n s t r u c t i n g N a r r a t i v e s of L i v i n g w i t h Having Had a D i a g n o s i s of Breast Cancer A. C o n s t r u c t i o n of a D i s c o u r s e on Cause B. Breast Cancer as a P o i n t of Change C. Breast Cancer as an Acute I l l n e s s D. Breast Cancer as a Terminal I l l n e s s E . C o n s t r u c t i n g Breast Cancer as a P a r t of L i f e . . . . F. M i s c e l l a n e o u s G. C o n c l u s i o n Chapter V I I I - Breast Cancer as S o c i a l R e a l i t y A . Representing S e l f - "Mine i s not as bad as some other p e o p l e ' s " 1. Breast Cancer Is Not A l l That Bad 2. The R h e t o r i c of D e a l i n g w i t h A d v e r s i t y B. Breast Cancer as a Family Experience 1. " W i l l he leave me?" - T a l k i n g about spouses 2'. Other Family Members 3. C r e a t i n g a Family H i s t o r y of Breast Cancer . C. Breast Cancer and S o c i a l I n t e r a c t i o n D. Becoming a Member of the Cancer Community E . Looking t o the Future F. C o n c l u s i o n Chapter A. B. C.  191 192 197 210 215 220 232 243 247  .  .  .  .  IX - C o n c l u s i o n S t o r y of D i a g n o s i s and Treatment Rewriting Personal Biographies Breast Cancer as S o c i a l R e a l i t y  263 264 267 271 273 277 282 285 292 301 309 314 315 320 327  Bibliography  335  AppSndix I - T o p i c s covered i n 29 s h o r t i n t e r v i e w s  354  Appendix II  - Recruitment  Letter  f o r Long Interviews  . . . .  355  LIST OF TABLES Table I - Estimated New Cases and Deaths f o r Breast Cancer by Age i n Canada  vix Acknowl edqemerrt s  I  w i l l take t h i s o p p o r t u n i t y t o thank the members of my  academic committee Dr. E l v i W h i t t a k e r ,  my s u p e r v i s o r , Dr. Nancy  Waxier-Morrison and Dr. W i l l i a m M c K e l l i n .  They a s s i s t e d and  supported me through my d o c t o r a l s t u d i e s , i n c l u d i n g through p e r i o d s of p e r s o n a l d i f f i c u l t y I staff  and i l l  health.  r e c e i v e d a g r e a t d e a l of a s s i s t a n c e from members of at the B r i t i s h Columbia Cancer Agency:  the  Mr. R i c h a r d D o l l  agreed t o take on the r o l e as my s u p e r v i s o r at the Agency f o r p a r t of t h i s r e s e a r c h ; Hislop for their  Dr.  Ivo O l i v o t t o and Dr. T . Gregory  support and a s s i s t a n c e i n doing the r e s e a r c h ;  Ms. L i z Dohan f o r her a s s i s t a n c e i n r e c r u i t i n g p a r t i c i p a n t s . Without the w i l l i n g n e s s of the p a r t i c i p a n t s t o share t h e i r experiences of having had a d i a g n o s i s of b r e a s t cancer t h i s t h e s i s would not have been p o s s i b l e .  In p a r t i c u l a r I would  t o thank Rebecca, Anne and T r i s h a f o r t h e i r  like  participation.  L a s t l y I would l i k e t o thank my f a m i l y f o r the unwavering support and a s s i s t a n c e .  In p a r t i c u l a r Stephen shared much of  t h i s work and was a wonderful e d i t o r and c r i t i c .  1 Chapter I  -  Introduction  A t t e n d i n g t o the p a t i e n t ' s d i s c o u r s e as i t e v o l v e s i n the course of the i l l n e s s t r a j e c t o r y enables us t o understand r e l a t i o n s h i p s between dimensions of human s u f f e r i n g and the c u l t u r a l and s t r u c t u r a l context i n which they e x i s t . (Kaufman 1988b:350) T h i s t h e s i s e x p l o r e s the c u l t u r a l  c o n s t r u c t i o n of women's  experiences w i t h b r e a s t cancer i n Vancouver, B r i t i s h Columbia. To do t h i s ,  I  focus on how women, who have had a d i a g n o s i s of 1  b r e a s t cancer  • and have f i n i s h e d treatment, r e f o r m u l a t e  their  p e r s o n a l b i o g r a p h i e s t o i n c l u d e the d i a g n o s i s and treatment their  daily lives.  I am i n t e r e s t e d  i n the c u l t u r a l  used t o develop b r e a s t cancer n a r r a t i v e s ,  in  constructs  particularly  as they  r e l a t e t o the c o n c e p t u a l i z a t i o n of becoming w e l l or "back t o normal" a f t e r a d i a g n o s i s of a l i f e - t h r e a t e n i n g  disease.  Many more people diagnosed w i t h cancer are s u r v i v i n g through the treatment p e r i o d than b e f o r e 1995).  ( N a t i o n a l Cancer I n s t i t u t e  Concerns have been r a i s e d about the problems people may  have i n r e t u r n i n g t o d a i l y l i f e a f t e r such a d i a g n o s i s (Dow Hoffman 1989a, Mullan 1985,  Q u i g l e y 1989).  1990,  Research has a l s o  examined the p o s i t i v e r e l a t i o n s h i p between s o c i a l support and s u r v i v a l from cancer ( B a l t r u s c h and Waltz 1985, M a r s h a l l 1983,  Waxier-Morrison et a l 1991).  Funch and  I am i n t e r e s t e d  how a person who has had a d i a g n o s i s of cancer c o n c e p t u a l i z e s p r o c e s s of s u r v i v a l .  E x p l o r a t i o n of the boundary  in the  between  I use the phrase "having had a d i a g n o s i s of b r e a s t cancer" r a t h e r than "with b r e a s t c a n c e r , " f o l l o w i n g the work of Juanne C l a r k e (1985). I do not want t o i d e n t i f y the p a r t i c i p a n t s i n t h i s study as people with c a n c e r , as t h a t suggests cancer i s the d e f i n i n g q u a l i t y f o r the i n d i v i d u a l s .  2 " i l l n e s s " and " s u r v i v a l " p r o v i d e s i n s i g h t i n t o the broader domain of the c u l t u r a l c o n s t r u c t i o n of i l l n e s s and h e a l t h i n Canadian society. I  am i n t e r e s t e d i n b r e a s t cancer f o r two r e a s o n s :  first,  because although a l a r g e number of women each year are diagnosed with i t  and many d i e , a number s u r v i v e f o r a s i g n i f i c a n t number  of years a f t e r d i a g n o s i s (National  Cancer I n s t i t u t e 1995);  second, because t h e r e i s an i n c r e a s e i n p u b l i c awareness o f , d i s c u s s i o n about b r e a s t cancer (Batt 1994,  Greene 1992,  and  Soffa  1994) . In t h i s t h e s i s I analyze i n t e r v i e w s with women who have had a d i a g n o s i s of b r e a s t cancer f o r the way i n which they have r e f o r m u l a t e d t h e i r p e r s o n a l b i o g r a p h i e s (Bury 1982, 1984)  t o i n c l u d e the b r e a s t cancer i n t h e i r  Williams  everyday l i v e s .  The s t o r y s t a r t s w i t h the d i a g n o s i s of a cancerous tumour the b r e a s t .  in  When women are diagnosed w i t h b r e a s t c a n c e r , they  must make d i f f i c u l t  d e c i s i o n s about t h e i r treatment.  These  d e c i s i o n s are based on p e r s o n a l experiences and c u l t u r a l understandings shared i n s o c i e t y ( G i f f o r d 1986, 1991,  S a l z b e r g e r 1976).  A l s o , through t h e i r  medical personnel and i n s t i t u t i o n s ,  Gordon 1990,  i n t e r a c t i o n with  these women are exposed t o  b i o m e d i c a l p e r c e p t i o n s and b e l i e f s about women and cancer 1985) , p a r t i c u l a r l y b r e a s t cancer (DeSantis 1979,  (Clarke  Saillant  They are c o n f r o n t e d with s t r u c t u r a l m a n i f e s t a t i o n s of  1990).  the  p o l i t i c s and economics of the l o c a l h e a l t h c a r e system (Kaufman 1988b).  The m a j o r i t y  trajectory  of women going through t h i s  are a l s o exposed t o a l t e r n a t i v e  illness  d i s c o u r s e s about  3 cancer,  from the media and s e l f - h e l p groups f o r example,  the s t r u c t u r a l  c o n s t r a i n t s of d a i l y  and t o  life.  Once the women have f i n i s h e d treatment, u s u a l l y about one year a f t e r d i a g n o s i s , they are no longer cancer p a t i e n t s , i n f l u e n c e of cancer on t h e i r  but  l i v e s can remain profound.  Biomedicine does not g e n e r a l l y r e c o g n i z e the experience ill  individuals, particularly  source of i n f o r m a t i o n  However,  1992;  interest  is  of the i l l n e s s experience as one way of  understanding i l l n e s s as l i v e d experience Kleinman 1988;  of  women, as being a v a l i d or v a l u e d  (Kleinman 1988).  growing i n the n a r r a t i o n  the  Brody 1987;  Conrad 1990;  Morse and Johnson 1991).  (Frank  1984;  Garro 1992,  The n a r r a t i v e s  Good 1994;  1994;  Hughes  of women who have  had a d i a g n o s i s of b r e a s t cancer r e l a t e how t h i s cancer becomes a p a r t of t h e i r  personal biographies.  In a n a l y z i n g the n a r r a t i v e s , b i o g r a p h i c a l d i s r u p t i o n and r e p a i r highlight  I use the concepts of (Bury 1982,  the p r o c e s s of i n c o r p o r a t i o n .  I  Williams  found t h a t  1984)  the  participants  7  as a r e s u l t  of the c h a l l e n g e s of l i v i n g w i t h having had a  l i f e s t o r i e s are c o n s t a n t l y d i s r u p t e d and r e p a i r e d  d i a g n o s i s of b r e a s t c a n c e r .  T h i s p r o c e s s of ongoing b i o g r a p h i c a l  r e p a i r extends w e l l beyond the treatment p e r i o d . faced by the p a r t i c i p a n t s inherent  to  The c h a l l e n g e s  can be understood as a c o n t r a d i c t i o n  i n the c u l t u r a l understanding of b r e a s t  cancer.  Cancer i s commonly c o n s t r u c t e d as a "death sentence" (Patterson  1987).  However,  r e c e n t l y t h e r e have been attempts t o  r e c o n s t r u c t cancer as " s u r v i v a b l e " i l l n e s s a n a l y z i n g the p e r s o n a l s t o r i e s ,  I  (Gordon 1990).  In  found t h i s change of meaning  4  has r e s u l t e d i n c o n f l i c t i n g i n t e r p r e t a t i o n s  of b r e a s t  The i l l n e s s s t o r i e s undergo constant r e v i s i o n as the try  t o accommodate these c o n t r a d i c t o r y To p r o v i d e a context  narratives  cancer. participants  interpretations.  f o r the reader t o i n t e r p r e t  I have reviewed  the  i n Chapter IV some b a s i c s t a t i s t i c s on  the i n c i d e n c e , m o r t a l i t y and s u r v i v a l of b r e a s t cancer i n Canada and B r i t i s h Columbia.  These s t a t i s t i c s p r o v i d e some  on the estimated number,  i n 1995,  of women who would be diagnosed  w i t h b r e a s t cancer and who would d i e from i t . research I  information  During  this  found t h a t such s t a t i s t i c s are used i n the  cultural  c o n s t r u c t i o n of b r e a s t c a n c e r , most commonly t o s t a t e t h a t cancer i s a s e r i o u s d i s e a s e .  In t h i s t h e s i s I take f o r  t h a t b r e a s t cancer i s s e r i o u s , as i t  is  breast  granted  life-threatening.  Chapter IV a l s o i n c l u d e s a d e s c r i p t i o n of the s t a g i n g of b r e a s t cancer tumours, t h a t i s , the d e t e r m i n a t i o n s e r i o u s n e s s of the d i s e a s e .  of  the  T h i s p r o v i d e s the reader w i t h a  b a s i c understanding of the b i o m e d i c a l c o n s t r u c t i o n of cancer and i t s treatment. their  Most p a r t i c i p a n t s  b r e a s t c a n c e r , and they used t h i s  the s e r i o u s n e s s of t h e i r information,  disease.  breast  knew the stage of  information to  I have l e f t  evaluate  additional  such as d e s c r i p t i o n s of b r e a s t cancer treatment t o  be t o l d by the p a r t i c i p a n t s F i n a l l y i n Chapter IV,  themselves. I have i n c l u d e d a b r i e f  the h e a l t h care system and s e r v i c e s a v a i l a b l e Lower Mainland of B r i t i s h Columbia  overview  t o women i n  of  the  who have had a d i a g n o s i s of  The Lower Mainland i n c l u d e s the c i t y of Vancouver, suburbs and the lower v a l l e y of the F r a s e r R i v e r .  its  5 breast cancer.  S i m i l a r i t i e s i n the i l l n e s s s t o r i e s r e s u l t  from  the f a c t t h a t p a r t i c i p a n t s had p r o v i n c i a l h e a l t h i n s u r a n c e , which covers most of the c o s t of treatment, and they a l l used a c e n t r a l i z e d treatment f a c i l i t y , same i n s t i t u t i o n a l  where they were exposed t o  the  culture.  To demonstrate the r i c h n e s s and d e t a i l  of the s t o r i e s I  have  presented i n Chapter V the f u l l accounts of two women, Anne and Rebecca.  These accounts p r o v i d e the c o n t e x t ,  background and  i n d i v i d u a l s t o r i e s of two women's experiences w i t h b r e a s t c a n c e r . Both s t o r i e s have some remarkable s i m i l a r i t i e s t o ,  and many  d i f f e r e n c e s from each other and those of other p a r t i c i p a n t s .  It  becomes c l e a r t h a t b r e a s t cancer i s not j u s t a m e d i c a l , but a l s o a s o c i a l experience.  The women must d e a l w i t h the c a n c e r , which  i s a threat to t h e i r cancer treatments.  l i v e s , and w i t h the extremely As w e l l ,  difficult  they have t o d e a l w i t h continuous  d i s r u p t i o n i n s o c i a l r e l a t i o n s and t h e i r d a y - t o - d a y l i v e s . Chapters VI through V I I I analyze the b r e a s t cancer accounts as n a r r a t i v e s .  They i n c l u d e data from the f i r s t  and from 30 other i n t e r v i e w s .  I  start  two  interviews  i n Chapter VI with the  a n a l y s i s of s t o r i e s of d i a g n o s i s and treatment.  These s t o r i e s  are remarkably s i m i l a r throughout a l l the a c c o u n t s , because of the p a r t i c i p a n t s Chapter IV)  7  i n t e r a c t i o n w i t h a v a i l a b l e h e a l t h s e r v i c e s (see  and t h e i r  shared c u l t u r a l understanding of b r e a s t  cancer. As noted above, i n Canadian s o c i e t y cancer i s c o n s i d e r e d both a death sentence and a s u r v i v a b l e i l l n e s s .  During the  p e r i o d of d i a g n o s i s and treatment, the p a r t i c i p a n t s f a c e  their  6 own m o r t a l i t y .  They n a r r a t e t h i s experience  r e c o n s t r u c t i n g the s t o r y of t h e i r  through  d i a g n o s i s of c a n c e r :  moving  from f a c i n g death t o having a d i s e a s e t h a t can be s u c c e s s f u l l y treated.  They c o n s t r u c t a f u t u r e f u l l  The n a r r a t i o n s  of t h i s t r a n s i t i o n  of hope. are remarkably  similar,  and are shared with many of the o n c o l o g i s t s , surgeons and other treatment p e r s o n n e l . The p a r t i c i p a n t s may l e a r n t h i s d i s c o u r s e of hope (DelVecchio Good 1991,  DelVecchio Good et a l  1990)  through  the p r o c e s s of d i a g n o s i s and treatment. However, participants  a f t e r the treatment p e r i o d i s f i n i s h e d must get on w i t h l i f e .  they r e w r i t e t h e i r  Chapter VII  the  e x p l o r e s how  personal biographies to include breast  cancer.  These accounts of the b r e a s t cancer experience are more v a r i e d than the s t o r i e s of d i a g n o s i s and treatment. experiences w i t h b r e a s t cancer i n t o t h e i r I  found t h a t the p a r t i c i p a n t s  schemata t o c o n s t r u c t t h e i r breast cancer. getting  Women f i t  individual  lives.  used f o u r d i f f e r e n t  narratives  their  cultural  and t o account f o r  the  They i n c l u d e d e s c r i p t i o n s of the p e r s o n a l r i s k  of  cancer.  As the p a r t i c i p a n t s  reconstruct t h e i r  i n c o r p o r a t e the d i s c o u r s e of hope.  biographies,  U n l i k e the s t o r y of d i a g n o s i s  and treatment, the c o n s t r u c t i o n of hope d i f f e r s each of the schemata u s e d .  they  Therefore,  slightly  with  the i l l n e s s n a r r a t i v e s  are  c o n s t a n t l y e v o l v i n g as the p a r t i c i p a n t s move beyond treatment. Chapter V I I I examines the e v o l v i n g n a r r a t i v e s , how b r e a s t cancer becomes a s o c i a l r e a l i t y .  f o c u s i n g on  A d i a g n o s i s of  b r e a s t cancer a f f e c t s many people b e s i d e s the women who have been  diagnosed, and t h e r e f o r e 1982).  As w e l l ,  affects  social relationships  women who have had a d i a g n o s i s of b r e a s t cancer  are faced w i t h the s o c i a l , having a l i f e - t h r e a t e n i n g the e v o l v i n g i l l n e s s  economic and p o l i t i c a l illness.  breast cancer.  of modify  narratives. constructions  such as the p o s s i b i l i t y of a daughter The i l l n e s s n a r r a t i v e s  getting  are a l t e r e d t o accommodate  these new c h a l l e n g e s , l e a v i n g the n a r r a t i v e s of  reality  A l l of these r e a l i t i e s  The women are faced w i t h c h a l l e n g e s t o t h e i r of the f u t u r e ,  (Bury  fragmented and  full  contradictions. Throughout these t h r e e chapters I show how the  e v o l v e t o accommodate i n d i v i d u a l c i r c u m s t a n c e s . women's d i v e r s e c i r c u m s t a n c e s , the n a r r a t i v e s  narratives  Despite  maintain common  themes,  i n c l u d i n g an understanding of the p e r s o n a l r i s k  getting  c a n c e r , c o n s t r u c t i n g a v i a b l e d i s c o u r s e of hope,  repairing disrupted s o c i a l relationships,  and coming t o  w i t h the c o n t r a d i c t i o n s of b r e a s t c a n c e r . theme i s the l a s t , to revise t h e i r  i n t h a t the p a r t i c i p a n t s  the  The most  of  terms  significant  are c o n s t a n t l y  trying  understanding of b r e a s t cancer t o accommodate the  a m b i g u i t i e s between c o n s t r u c t i o n s of the d i s e a s e as both a death sentence and a inherent  survivable i l l n e s s .  i n our c u l t u r a l  T h i s c o n t r a d i c t i o n may be  understanding of cancer and may be one  reason cancer i s not openly d i s c u s s e d .  8  Chapter II - Development of a Theoretical Perspective  T h i s chapter develops the t h e o r e t i c a l t h e s i s and d e s c r i b e s how t h a t p e r s p e c t i v e data.  p e r s p e c t i v e of  the  i s used t o analyze  the  The f i r s t s e c t i o n e x p l o r e s the l i t e r a t u r e on i l l n e s s  narratives.  The second e x p l o r e s the l i t e r a t u r e on the  c o n s t r u c t i o n of c a n c e r ,  f o c u s i n g on b r e a s t  cultural  cancer.  A. Narrating I l l n e s s Recently t h e r e has been growing i n t e r e s t i n the n a r r a t i o n  of  the i l l n e s s experience as one way of understanding i l l n e s s as l i v e d experience  (Good 1994).  the convergence of two a r e a s :  T h i s i n t e r e s t has developed r e s e a r c h i n medical  on i l l n e s s as l i v e d experience and a n t h r o p o l o g i c a l narratives  and n a r r a t i v e thought.  convergence and d i s c u s s how, individuals  7  formulated  into i l l n e s s narratives,  anthropology r e s e a r c h on  In t h i s s e c t i o n I  i n the case of t h i s  from  review  this  thesis,  accounts of t h e i r experience w i t h b r e a s t cancer the  are  intersubjective  c o n s t r u c t i o n s t h a t p o s i t i o n the s t o r i e s w i t h i n a s o c i a l and cultural insight  context.  The a n a l y s i s of these n a r r a t i v e s  i n t o the c u l t u r a l  1.  c o n s t r u c t i o n of b r e a s t  provides  cancer.  I l l n e s s as L i v e d Experience  The i n t e r e s t i n medical anthropology  i n i l l n e s s as  lived  experience developed out of a l a c k of understanding of the context  of i l l n e s s and h e a l i n g i n m e d i c i n e .  m e d i c a l , n u r s i n g and r e h a b i l i t a t i o n  Until  social  recently,  r e s e a r c h on i l l n e s s tended  to  9 d i v o r c e the experience of being i l l s o c i a l world.  The i l l  from t h a t of l i v i n g i n  person was c o n s i d e r e d a p a t i e n t .  e x i s t e n c e o u t s i d e the c l i n i c was not c o n s i d e r e d r e l e v a n t  the  Her to  the  type of treatment she r e c e i v e d , nor t o whether or not she 3 recovered from her i l l n e s s .  In cases of c h r o n i c i l l n e s s e s and  d i s a b i l i t i e s t h i s narrow c l i n i c a l gaze r e s u l t e d i n f a i l u r e s treatment being blamed on the p a t i e n t  of  (Zola 1982).  Medical a n t h r o p o l o g i s t s and s o c i o l o g i s t s have long been i n t e r e s t e d i n the s o c i a l experience of becoming i l l  and h e a l i n g .  For example, e a r l y a n t h r o p o l o g i c a l work e x p l o r e d how  different  groups of people e x p l a i n e d what caused and h e a l e d d i s e a s e 1968,  E v a n s - P r i t c h a r d 1937).  (Turner  These i n v e s t i g a t i o n s l e d t o an  understanding of the way i n which the c l a s s i f i c a t i o n of d i s e a s e and the treatment of i l l n e s s r e f l e c t e d worldviews 1963), s o c i a l r e l a t i o n s processes the i l l  (Turner  1968).  ( E v a n s - P r i t c h a r d 1937)  (Levi-Strauss  and s o c i a l  They d i d not d e a l , however, w i t h how  i n d i v i d u a l s l i v e d or how t h e i r  experience was framed by  worldviews and s o c i a l p r o c e s s e s , although l a t e r were more l i k e l y t o do so ( c f .  Leyton 1978,  anthropologists  Fabrega and S i l v e r  1973) . T h e o r e t i c a l work i n medical anthropology and s o c i o l o g y a l s o c o n t r i b u t e d t o the understanding of i l l n e s s as l i v e d e x p e r i e n c e . A number of t h e o r e t i c a l  developments were  particularly  E p i d e m i o l o g i c a l r e s e a r c h has demonstrated the importance of v a r i a b l e s such as s o c i a l support t o s u r v i v a l and h e a l t h s t a t u s (Berkman and Syme 1979). S e v e r a l s t u d i e s have l i n k e d s o c i a l support t o improved q u a l i t y of l i f e (Bloom 1982, Bloom and S p e i g e l 1984, D u n k e l - S c h e t t e r 1984) and s u r v i v a l (Funch and M a r s h a l l 1983, Waxier-Morrison et a l 1991) of b r e a s t cancer patients.  10 important,  such as the i n i t i a l development of the concept of  s i c k r o l e by T a l c o t t  Parsons (1979).  the  Parsons c o n c e p t u a l i z e d a  s i c k r o l e , w i t h r i g h t s and o b l i g a t i o n s t h a t must be adhered t o for healing to occur.  T h i s concept grounds the experience 4  being s i c k f i r m l y functionalist time-limited  i n the s o c i a l w o r l d .  . . . A c r i t i c i s m of P a r s o n s '  s i c k r o l e i s t h a t , although i t acute i l l n e s s e s , i t  of persons c h r o n i c a l l y i l l  of  makes sense f o r  does not account f o r the  or d i s a b l e d (Gallagher  1979,  roles  Alexander  1982) . The second t h e o r e t i c a l  development was t h a t of a d i s t i n c t i o n  between " d i s e a s e " and " i l l n e s s " .  T h i s d i s t i n c t i o n allows f o r  the  e l a b o r a t i o n of the s o c i a l experience of being s i c k , where " d i s e a s e " i s the b i o l o g i c a l and p s y c h o l o g i c a l p r o c e s s e s t h a t have gone awry w i t h the i n d i v i d u a l ,  and where " i l l n e s s " i s the s o c i a l  experience and the meaning a t t r i b u t e d t o the d i s e a s e  (Kleinman,  E i s e n b e r g and Good 1978). Therefore  " i l l n e s s " can be s t u d i e d without c h a l l e n g i n g  the  assumption t h a t b i o m e d i c a l d i s e a s e s are g e n e r i c and u n i v e r s a l . T h i s d i s t i n c t i o n has enabled c l i n i c i a n s t o argue i n c o r p o r a t i n g i n t o treatment p l a n s i n f o r m a t i o n  for  on p a t i e n t s '  everyday e x i s t e n c e w i t h the hope of humanizing medical (Fabrega 1979,  practice  Kleinman 1988).  P a r s o n s ' s i c k r o l e has been e l a b o r a t e d t o c o n s i d e r being i l l not as a r o l e , but as behaviour (Fabrega 1974). Illness behaviour i s an expansion of the more t r a d i t i o n a l s i c k r o l e , but i t s t i l l focuses on an episode of i l l n e s s and on the medical i n s t i t u t i o n s t h a t t r e a t i t (Schneider and Conrad 1983), not on the everyday experience of l i v i n g with i l l n e s s .  11 The t h i r d t h e o r e t i c a l  development was Kleinman's  (1980)  concept of "explanatory  models".  i n d i v i d u a l becomes i l l ,  he or she h o l d s an explanatory model of  the i l l n e s s .  Kleinman argues t h a t when an  These models i n c l u d e c o n s t r u c t s of e t i o l o g y  (time  and mode of the onset of symptoms), pathophysiology (course of the s i c k n e s s ) and treatment.  They are used t o understand  course of the i l l n e s s , t o e v a l u a t e produce s o c i a l meaning f o r the  the treatment r e c e i v e d and t o  illness.  The p h y s i c i a n a l s o h o l d s an explanatory patient's  the  model of  the  i l l n e s s , based on a b i o m e d i c a l understanding of d i s e a s e  and p h y s i o l o g y .  As w e l l ,  h e / s h e h o l d s a c o n c e p t i o n of what  treatment should e n t a i l and what course the i l l n e s s should t a k e . A l l o f these can d i f f e r  significantly  developed by the p a t i e n t .  ability  conceptualizations  Kleinman (1980) proposes t h a t  medical p r o f e s s i o n a l s t o e l i c i t improve t h e i r  from the  patients'  explanatory models w i l l  to provide appropriate  care.  The use of Kleinman's explanatory models i s however,  because i t  limited,  was developed w i t h i n the context of  b i o m e d i c a l treatment system.  the  The c o n s t r u c t s i n c l u d e d i n  model, such as e t i o l o g y and a p p r o p r i a t e  teaching  the  treatment, are s i m i l a r  to  and d e r i v e d from biomedicine and do not i n c l u d e any concept of i l l n e s s as a s o c i a l e x p e r i e n c e . Young (1981) p o i n t s t o another l i m i t a t i o n . models assume r a t i o n a l i t y  explanatory  and ignore the complexity of  c o n s t r u c t i o n of models of i l l n e s s 5  The  5  .  As I  found i n  the  this  Hahn has developed the concept of " s i c k n e s s " which he d e f i n e s as an unwanted c o n d i t i o n of s e l f , or s u b s t a n t i a l t h r e a t of an unwanted c o n d i t i o n of s e l f (1995:22). T h i s i s much broader than the concept of an explanatory model, as i t can i n c l u d e  12 research,  an i n d i v i d u a l ' s understanding of an i l l n e s s can c o n t a i n  c o n t r a d i c t i o n s r e s u l t i n g from the competing c o n s t r u c t i o n s t o which the i n d i v i d u a l  i s exposed, and i n a d d i t i o n  their  understanding can change over time w i t h new i n f o r m a t i o n experiences  and  (Becker 1994).  Besides these t h e o r e t i c a l  developments i n medical  anthropology and s o c i o l o g y , t h e r e has a l s o been i n c r e a s i n g interest  i n people l i v i n g w i t h c h r o n i c i l l n e s s e s and d i s a b i l i t y  Much of t h i s r e s e a r c h i s i n the t r a d i t i o n interactionism, Charmaz 1990,  of symbolic  u s i n g a grounded theory approach ( f o r  Hughes 1992).  example  T h i s work has c o n t r i b u t e d t o an  understanding of the o r g a n i z a t i o n and management of d a i l y with chronic i l l n e s s 1991).  .  (Strauss and G l a s s e r 1978,  living  Morse and Johnson  In the l i f e course of a person w i t h c h r o n i c d i s e a s e ,  w h i l e medical c r i s e s do occur and must be managed, the r e a l i t y of working, m o b i l i t y  and m a i n t a i n i n g  day-to-day  s o c i a l c o n t a c t s and  f a m i l y t i e s demands c o n s i d e r a b l e time and energy  (Schneider and  Conrad 1983). However, and c a t e g o r i e s  the p r o c e s s of examining the data f o r common themes (Glaser and S t r a u s s 1967)  limits  the  exploration  of the v a r i a t i o n w i t h i n each category and the a n a l y s i s of those cases t h a t do not f i t  the common themes and c a t e g o r i e s .  This  c o n d i t i o n s not normally c o n s i d e r e d medical or h e a l t h c o n d i t i o n s . Hahn d e s c r i b e s accounts of s i c k n e s s t h a t are much l i k e i l l n e s s narratives. Armstrong (1990) argues t h a t the i n c r e a s e d i n t e r e s t i n and r e s e a r c h on c h r o n i c i l l n e s s by s o c i a l s c i e n t i s t s has extended the s o c i o - m e d i c a l gaze. The i m p l i c a t i o n i s t h a t s o c i a l s c i e n t i s t s doing r e s e a r c h may be c r e a t i n g data and medical problems where none a c t u a l l y e x i s t .  13 c a t e g o r i z a t i o n and thematic a n a l y s i s "disembodies" the  categories  as i d e n t i f i e d by the r e s e a r c h e r s from the a c t u a l experiences of the i n d i v i d u a l s who produce the data An a l t e r n a t i v e  way t o examine the i l l n e s s experience i s as  p a r t of a p e r s o n a l biography trajectory  (Conrad 1990).  (Frank 1984,  (Kaufman 1988b), t h e r a p e u t i c  sickness story  (Brody 1987)  W i l l i a m s 1984).  It  Kaufman 1988a),  narrative  or i l l n e s s n a r r a t i v e  (Early  illness 1982),  (Kleinman  i s important t o d i s t i n g u i s h between  1988,  the  account or s t o r y of an i l l n e s s experience and an i l l n e s s narrative. It would be a grave e r r o r t o conceive i l l n e s s n a r r a t i v e s as the product of an i n d i v i d u a l s u b j e c t , a s t o r y t o l d by an i n d i v i d u a l simply t o make sense of h i s or her l i f e . . . The n a r r a t i v e s were i n t e r s u b j e c t i v e i n a d i r e c t and obvious way: they were s t o r i e s t h a t u t i l i z e d popular c u l t u r a l forms t o d e s c r i b e experiences shared by members of a f a m i l y ; the s t o r i e s were d i a l o g i c a l l y c o n s t r u c t e d , t o l d o f t e n by interwoven c o n v e r s a t i o n s of s e v e r a l p e r s o n s , s t o r i e s whose r e f e r e n t s were o f t e n the experiences of persons other than the n a r r a t o r s ; and they were s t o r i e s p o s i t i o n e d • amidst a u t h o r s , n a r r a t o r s , and audience (Good 1994:158). For s i m p l i c i t y throughout t h i s t h e s i s , I have r e f e r r e d  to  the i n d i v i d u a l s t o r i e s of the experience of having had a d i a g n o s i s of b r e a s t cancer as s t o r i e s or a c c o u n t s . narratives  Illness  are the a b s t r a c t c u l t u r a l c o n s t r u c t i o n s , which I  draw  out of the i n d i v i d u a l accounts through the a n a l y s i s of common s t r u c t u r e s and themes.  2. N a r r a t i v e s The c u r r e n t  interest  and N a r r a t i v e  Thought  in i l l n e s s narratives p a r a l l e l s  development i n anthropology and other d i s c i p l i n e s of an  the interest  14 i n n a r r a t i v e s and n a r r a t i v e thought.  An i l l n e s s n a r r a t i v e  c u l t u r a l l y a p p r o p r i a t e s t o r y of becoming i l l , the i l l n e s s and the r e c o v e r y .  is  the  the treatment of  N a r r a t i v e s are used as a way of  t h i n k i n g about the world and understanding what i s going on i n one's  life. N a r r a t i v e o f f e r s what i s perhaps our most fundamental way of understanding l i f e i n t i m e . Through n a r r a t i v e we t r y t o make sense of how t h i n g s have come t o pass and how our a c t i o n s and the a c t i o n s of o t h e r s have helped shape our h i s t o r y ; we t r y t o understand who we are becoming by r e f e r e n c e t o where we have been ( M a t t i n g l y and Garro 1994). As a form of communication between two or more p e o p l e ,  w r i t e r and r e a d e r , structure  the speaker and l i s t e n e r ,  (Agar 1980).  Labov and Waletzky  a n a r r a t i v e has a  (1966) examined  numerous n a r r a t i v e s of events and found a s i m i l a r i t y basic structure.  the  in  their  The s i m i l a r i t y of s t r u c t u r e was found i n the  sequencing of events and a r e f e r e n t i a l  or e v a l u a t i v e  function.  L i f e n a r r a t i v e s share a s i m i l a r s t r u c t u r e , which p r o v i d e s coherence and an e v a l u a t i v e q u a l i t y t o the s t o r i e s 1982,  Lawless 1993).  (Meyerhoff  The s t r u c t u r e of the n a r r a t i v e  the communication of the s t o r y , p r o v i d i n g a framework  assists in for  interpretation. The s t r u c t u r e of the n a r r a t i v e shapes the s t o r y and g i v e s i t  i s formed by the p l o t ,  d i r e c t i o n and i n t e n t  which  (Brooks 1984).  The p l o t p r o v i d e s a b e g i n n i n g and an end, so t h e r e i s the sense o f the passage of  time.  N a r r a t i v e i s one of the ways i n which we speak, one of the l a r g e c a t e g o r i e s i n which we t h i n k . Plot i s i t s t h r e a d of d e s i g n and i t s a c t i v e shaping f o r c e , the product of our r e f u s a l t o allow t e m p o r a l i t y t o be meaningless, our stubborn i n s i s t e n c e on making meaning i n the world and i n our l i v e s (Brooks 1984:323).  15 Narratives  not only r e l a t e e v e n t s , but a l s o c o n s t r u c t  meaning of those e v e n t s .  the  They are an attempt t o make the  i n e x p l i c a b l e understandable and meaningful through  the  i n c o r p o r a t i o n of c u l t u r a l understanding shared by members of society  ( P r i c e 1987;  My i n t e r e s t  Garro 1992,  1994).  i s t o analyze women's accounts of  their  experience of having a d i a g n o s i s of b r e a s t cancer t o c u l t u r a l understandings shared by members of t h e i r women c o n s t r u c t t h e i r communicate t h e i r  accounts w i t h a s t r u c t u r e  stories.  the  illuminate  society.  The  and p l o t t o  help  The examination of the s t r u c t u r e  p l o t s p r o v i d e s i n s i g h t i n t o the i l l n e s s n a r r a t i v e s  and  women are  using.  3.  Illness  Narratives  In the next p a r t of t h i s chapter I review some of l i t e r a t u r e on i l l n e s s n a r r a t i v e s ,  the  t o e x p l o r e the themes t h a t 7  p r o v i d e i n s i g h t i n t o the c u l t u r a l First,  c o n s t r u c t i o n of b r e a s t cancer .  I review the p r o c e s s of d i s r u p t i o n and r e p a i r t h a t occurs  w i t h the advent of a c h r o n i c c o n d i t i o n .  Second, I  review how the  concept of d i s r u p t i o n and r e p a i r can be a p p l i e d t o the s e l f , body and b i o l o g i c a l t i m e .  T h i r d , I examine the impact of  the  the  In t h i s t h e s i s I am i n t e r e s t e d i n the n a r r a t i o n of i l l n e s s from the p e r s p e c t i v e of the i n d i v i d u a l who i s i l l . However, t h e r e i s a l s o a d e v e l o p i n g l i t e r a t u r e on the n a r r a t i o n of i l l n e s s from the p e r s p e c t i v e of the care p r o v i d e r ( f o r example M a t t i n g l y 1994, Hunt 1994), which e x p l o r e s many i s s u e s of c l i n i c a l practice. Another f a s c i n a t i n g , but as yet s m a l l l i t e r a t u r e i s t h a t of a n t h r o p o l o g i s t s and s o c i o l o g i s t s w r i t i n g a u t o b i o g r a p h i e s about t h e i r own i l l n e s s experiences (Murphy 1987, DiGiacomo 1987, and Z o l a 1982).  16 s o c i a l context illness  a.  i n which i l l n e s s occurs on the c o n s t r u c t i o n of  the  narrative.  D i s r u p t i o n and R e p a i r The onset of a c h r o n i c or l i f e - t h r e a t e n i n g  i n t r o d u c e s dramatic changes and reshapes an c o n c e p t u a l i z a t i o n of l i f e .  condition  individual's  The c o n s t r u c t i o n of an account of  these changes i s one way of d e v e l o p i n g an understanding of what has happened and what may happen i n the f u t u r e .  T h i s account  . . . employs the web of commonsense e x p l a n a t i o n s which l i n k s the unique, somatic event w i t h shared c u l t u r a l knowledge about i l l n e s s . These e x p l a n a t i o n s serve both t o e v a l u a t e t h e r a p e u t i c a c t i v i t i e s and t o make sense of experience. They s i t u a t e i l l n e s s w i t h i n the socioeconomic r e a l i t y which s e t s the parameters of t h e r a p e u t i c a c t i o n ( E a r l y 1982:1492). T h i s p r o c e s s of accounting f o r the onset of a c h r o n i c c o n d i t i o n w i t h i n the c o n s t r u c t i o n of an i l l n e s s has been t o as " b i o g r a p h i c d i s r u p t i o n " reconstruction"  (Williams  Incorporation disability  (Bury 1982)  or  referred  "narrative  1984).  of the p a i n , s u f f e r i n g ,  loss,  changes and  of a s e r i o u s c o n d i t i o n i n t o a p e r s o n a l biography can  be seen as a p r o c e s s of r e w r i t i n g or b i o g r a p h i c a l work and S t r a u s s 1987,  Kaufman 1988a, W i l l i a m s  1984,  (Corbin  Becker 1994).  T h i s i n c l u d e s r e w r i t i n g of l i f e p r i o r t o the i l l n e s s t o account f o r the i l l n e s s , as w e l l as r e w r i t i n g f u t u r e p o s s i b i l i t i e s .  b. The S e l f ,  the Body and B i o g r a p h i c a l Time  W i t h i n the r e s e a r c h on i l l n e s s n a r r a t i v e s ,  the concept of  d i s r u p t i o n and r e p a i r has been a p p l i e d t o t h r e e a r e a s .  They are  17 the d i s r u p t i o n and r e p a i r of the s e l f ,  the body and b i o g r a p h i c a l  time (Corbin and S t r a u s s 1985). The f i r s t  area addresses the onset of a c h r o n i c or  life-  t h r e a t e n i n g c o n d i t i o n c h a l l e n g e s the i n d i v i d u a l ' s concepts of s e l f and i d e n t i t y .  T h i s o c c u r s through the s t r i p p i n g of autonomy  by a d i s a b l i n g c o n d i t i o n , such as the t h r e a t t o l i f e of a cancer diagnosis. Through the i l l n e s s s t o r y , the i n d i v i d u a l develops f o r listener a preferred identity.  In most cases t h i s i d e n t i t y  the will  be one i n which the s e l f i s a b l e t o perform normally and i n which l i f e maintains some meaning.  Many of these accounts are  c o n s t r u c t e d i n ways t h a t are u p l i f t i n g  and o p t i m i s t i c .  Robinson (1990), examining p e r s o n a l s t o r i e s of people w i t h multiple  sclerosis,  optimistic.  d e s c r i b e d how the m a j o r i t y  were p o s i t i v e and  Such p o s i t i v e and o p t i m i s t i c p o r t r a y a l s of  c o n s t r u c t a l i f e separate from the i l l n e s s , where t h e r e f o r the f u t u r e  (Corbin and S t r a u s s 1987).  i s hope  Kaufman (1988a) has  r e f e r r e d t o t h i s p r o c e s s as the r e i n t e r p r e t a t i o n In t h e i r  self  of  r e s e a r c h on women's s t o r i e s of t h e i r  self. experience  w i t h b r e a s t c a n c e r , Mathieson and Stam (1995) d e s c r i b e d a s e r i e s of c h a l l e n g e s t o i d e n t i t y , r e c o n s t r u c t i o n of i d e n t i t y . t o the s e l f , treatment.  r e s u l t i n g i n a continuous T h i s suggests a constant c h a l l e n g e  c o n t i n u i n g p a s t the i n i t i a l  p e r i o d of d i a g n o s i s and  T h i s i s understandable i n a c h r o n i c i l l n e s s ,  o n e ' s c o n d i t i o n may d e t e r i o r a t e  over time.  However,  where  even i n an  18 acute i l l n e s s , such as c a n c e r , t h e r e are times a f t e r  the  completion of treatment when new c h a l l e n g e s t o the s e l f  are  raised . 8  The main c h a l l e n g e t o s e l f i s the t h r e a t of death.  However,  t h i s s p e c i f i c t h r e a t i s not r a i s e d much i n the l i t e r a t u r e on illness narratives.  Saillant  (1990), i n an extended account of a  woman d y i n g of b r e a s t c a n c e r , d e s c r i b e s the impact of m o r t a l i t y on the i l l n e s s n a r r a t i v e reconstructing s e l f .  and the b i o g r a p h i c a l work i n  She found the t h r e a t of death i s a c e n t r a l  theme of much of the work on r e c o n s t r u c t i n g of the s e l f and the future.  As Yvette went from having cancer t o d y i n g from c a n c e r ,  the meaning of the cancer changed, as d i d the r e c o g n i t i o n of impact on her  the  life.  The s e l f - d i a g n o s i s of a cancer "caught i n time" [ p r i s a temps] corresponds t o the s u r v i v a l experience and i s c o g n i t i v e l y d i s t i n c t from the d i a g n o s i s of having cancer [ a v o i r l e c a n c e r ] , which i s a s s o c i a t e d r a t h e r w i t h the t e r m i n a l phase. (1990:97) The t h r e a t of m o r t a l i t y posed by a d i a g n o s i s of cancer was a l s o the g r e a t e s t  c h a l l e n g e t o the i n d i v i d u a l c o n s t r u c t i o n of s e l f  the women I  interviewed.  for  The second area i s the d i s r u p t i o n and r e p a i r of the body. Recently,  anthropology has developed an i n t e r e s t  paradigm,  for i t  (Csordas 1990,  i n the body as  i s through the body t h a t we experience the  1994;  world  Scheper-Hughes and Lock 1987).  Breast cancer r e s u l t s i n p h y s i c a l changes t o the body. women d e s c r i b e d how l o s s of the b r e a s t a f f e c t e d t h e i r  Some  sense of  For the b e s t example of t h i s p r o c e s s of r e w r i t i n g and r e t h i n k i n g of s e l f , see Anne's n a r r a t i v e i n Chapter V.  19 b a l a n c e , as they f e l t o f f balance or l o p s i d e d .  Some d e s c r i b e d  how s u r g e r y , lumpectomy or mastectomy, had a negative impact on the sexual s e n s i t i v i t y of t h e i r  breast.  There i s a l s o a conceptual change i n the understanding of the body and i t s  limits.  individual's  With a d i a g n o s i s of  c a n c e r , the i n d i v i d u a l ' s body i s seen t o have been invaded by c e l l s t h a t are out of c o n t r o l  ( S e i g e l 1986).  The i n d i v i d u a l must  come t o terms w i t h t h i s t r a n s g r e s s i o n of the body.  Some women  r e d e f i n e d t h e i r b o d i e s , viewing the b r e a s t and the cancer as b e i n g o u t s i d e the body. The body i s a p r o b l e m a t i c e n t i t y ,  transformed through the  narrative. Meanings a s s o c i a t e d w i t h an i l l n e s s are i n t e r p r e t e d w i t h i n t h i s b i o g r a p h i c a l c o n t e x t , through s o c i a l r e l a t i o n s h i p s as w e l l as through the most mundane aspects of l i f e . The body i t s e l f e v o l v e s w i t h i n the context of t h i s biography and i s transformed i n i n t e r a c t i o n s w i t h others (Becker 1994:385). However, 1982,  the body cannot be separated from the s e l f  Csordas 1994,  Turner 1984).  (Gadow  The concept of s e l f i s  through the body (Corbin and S t r a u s s 1987).  Therefore,  formed  in  the  i l l n e s s accounts the b i o g r a p h i c a l work of d e s c r i b i n g the d i s r u p t i o n of s e l f i s l i n k e d i n e x t r i c a b l y t o t h a t of d e s c r i b i n g 9 the d i s r u p t i o n of the body . Charmaz (1987) argues t h a t the i n t e g r a t i o n identity  of the body and  makes a s u c c e s s f u l s e l f and t h a t , through the  In my p e r s o n a l experience of s u f f e r i n g w i t h a c h r o n i c c o n d i t i o n I f i n d i t d i f f i c u l t to i n t e l l e c t u a l l y d i s t i n g u i s h between body and s e l f . I have found a gap i n language t h a t r e s u l t s i n an i n a b i l i t y t o t a l k about the p h y s i c a l i t y of s e l f grounded i n the p h y s i c a l body.  20 reconstructed s e l f , f o r the f u t u r e .  the i n d i v i d u a l can redevelop hopes and p l a n s  T h i s i s the case i n the b r e a s t cancer a c c o u n t s ,  where the p h y s i c a l consequences of treatment are p e r c e i v e d as challenges to identity body and i d e n t i t y ,  and s e l f .  R e c o n s t r u c t i o n of s e l f ,  i s necessary t o c r e a t e hope f o r the  both  future.  The l a s t of the t h r e e areas i s the d i s r u p t i o n of b i o g r a p h i c a l time caused by c h r o n i c i l l n e s s .  As a r e s u l t  of  this  d i s r u p t i o n , the passage of time s h i f t s i n meaning.  Time c a r r i e s  s i g n i f i c a n t and a l t e r e d meaning w i t h i n the s t o r y .  Individuals  recount the p a s t i n l i g h t 1994;  Williams  1984).  of the present i l l n e s s  (Garro  1992,  T h i s i s the case i n t h i s r e s e a r c h , as the  women develop accounts of why they got b r e a s t cancer or were at r i s k of g e t t i n g b r e a s t  cancer.  Wilson (1991) mentions t h a t as time passes a f t e r a d i a g n o s i s of c a n c e r , the l i k e l i h o o d of the c a n c e r ' s r e c u r r e n c e decreased.  Therefore,  passage of time,  the passage of t i m e ,  and marking  take on s i g n i f i c a n t meaning i n the  accounts (Roth 1963,  Zerubavel 1979).  is the  illness  In d e s c r i p t i o n s of  experiences w i t h b r e a s t c a n c e r , the p a r t i c i p a n t s  in this  their research  mark the passage of time as they pass through a s e r i e s of check ups w i t h t h e i r  physicians.  The more time t h a t has passed s i n c e  the d i a g n o s i s , as marked by the check u p s , the l e s s l i k e l y cancer w i l l  the  recur.  Current time a l s o changes i t s meaning.  C o r b i n and S t r a u s s  (1985) r e l a t e how, w i t h i n the i l l n e s s account, i n d i v i d u a l s of the importance of the use of time, This i s also a prevalent  and t h a t i t  talk  not be wasted.  t o p i c i n the accounts of the  breast  cancer e x p e r i e n c e . limited  It  i s as i f  time has become more important,  a  commodity.  In t h i s t h e s i s I analyze i n d i v i d u a l accounts of having had a d i a g n o s i s of b r e a s t c a n c e r , l o o k i n g f o r the d e s c r i p t i o n s of d i s r u p t i o n and r e p a i r of s e l f ,  body and b i o g r a p h i c a l t i m e .  These  d e s c r i p t i o n s h i g h l i g h t some of the c u l t u r a l c o n s t r u c t s t h a t c o n t r i b u t e t o b r e a s t cancer n a r r a t i v e s .  c.  S o c i a l Context of I l l n e s s  Narratives  The t h r e e areas I have d i s c u s s e d above are a l l the b i o g r a p h i c a l work i n the i n d i v i d u a l a c c o u n t s .  related However,  c o n s t r u c t i o n of these areas d e a l s w i t h the i n d i v i d u a l s t o r i e s as i f relations, I  to the  illness  they were i s o l a t e d from the impact of s o c i a l  economics, p o l i t i c s or i n s t i t u t i o n a l  have found t h i s a n a l y s i s i n s i g h t f u l ,  it  medicine.  i s also limiting.  b e l i e v e the a n a l y s i s must go beyond the i n d i v i d u a l , t o other f a c t o r s t h a t a f f e c t  While I  explore  the development of an i l l n e s s a c c o u n t .  Because the women who have had a d i a g n o s i s of b r e a s t cancer l i v e within society, their  i l l n e s s s t o r i e s r e v e a l more than  the r e c o n s t r u c t i o n of s e l f and i d e n t i t y . must account f o r ,  the l i m i t a t i o n s  just  They a l s o i n c l u d e , and  the i n d i v i d u a l s f a c e when  l i v i n g w i t h a c h r o n i c i l l n e s s , such as l i m i t a t i o n s  of treatment  (Kaufman 1988b) and c o n f l i c t i n g i n t e r p r e t a t i o n s  illness  (Blaxter  1983,  Wardlow and Curry 1996).  chapter looks at the s o c i a l c o n t e x t :  narratives.  T h i s s e c t i o n of  how i t  development of i l l n e s s s t o r i e s and how i t  of  affects  the  the  i s included i n i l l n e s s  22 The f i r s t  area I wish t o r a i s e i s the d i s r u p t i o n of s o c i a l  r e l a t i o n s by the advent of a c h r o n i c i l l n e s s . My c o n t e n t i o n i s t h a t i l l n e s s , and e s p e c i a l l y c h r o n i c i l l n e s s , i s p r e c i s e l y t h a t k i n d of experience where the s t r u c t u r e s of everyday l i f e and the forms of knowledge which underpin them are d i s r u p t e d . Chronic i l l n e s s i n v o l v e s the r e c o g n i t i o n of the worlds of p a i n and s u f f e r i n g , p o s s i b l y even d e a t h , which are normally only seen as d i s t a n t p o s s i b i l i t i e s or the p l i g h t of o t h e r s . In a d d i t i o n , i t b r i n g s i n d i v i d u a l s , t h e i r f a m i l i e s , and wider s o c i a l networks face t o face w i t h the c h a r a c t e r of t h e i r r e l a t i o n s h i p s i n s t a r k form, d i s r u p t i n g normal r u l e s of r e c i p r o c i t y and mutual support (Bury 1982). Bury (1982) a l i g n s the d i s r u p t i o n o f biography by c h r o n i c i l l n e s s w i t h a d i s r u p t i o n of s o c i a l r e l a t i o n s .  This disruption  allows f o r the m o b i l i z a t i o n of r e s o u r c e s i n order t o d e a l w i t h the d a i l y management of an i l l  person's l i f e .  For example,  Wilson (1991) documented the e x t e n s i v e amount of work undertaken by husbands when t h e i r wives go through chemotherapy.  The  m o b i l i z a t i o n of s o c i a l r e s o u r c e s may come from unexpected s o u r c e s , such as f r i e n d s or neighbours who were not p r e v i o u s l y close  (DeSantis 1979).  I l l n e s s may r e s u l t  i n expected sources of  support not l i v i n g up t o the e x p e c t a t i o n s of the i l l 1982,  person (Bury  P e t e r s - G o l d e n 1982), such as f r i e n d s who do not v i s i t  or  10 h e l p d u r i n g the treatment of the cancer (DeSantis 1979)  .  The second area of d i s r u p t i o n i s t h a t caused by a d e c l i n i n g ability  t o work and the economic impact of the i l l n e s s .  After  a n a l y s i s of the i l l n e s s s t o r i e s of those f a c i n g end stage failure,  Gerhardt s a i d ,  an  renal  "One may conclude t h a t s t r u c t u r e s of  everyday s o c i o - e c o n o m i c coping extend i n t o and c h a r a c t e r i z e  S i m i l a r i n c i d e n t s of l a c k of support have been found among the unemployed ( S t r o t h e r and Bogden 1988).  also  23 the l i v e s of those who are c h r o n i c a l l y s i c k " T h i s i s more than j u s t identity  a readjustment  p l a y s a major p a r t .  It  (1990:1221).  of s e l f ,  although  i s a l s o coming t o terms w i t h the  economic consequences of the i l l n e s s .  Feldman's (1986)  research  has shown t h a t women i n the workplace who have had a d i a g n o s i s of cancer sometimes face job d i s c r i m i n a t i o n .  The economic  consequences of c h r o n i c i l l n e s s a l s o c h a l l e n g e the s t o r y c o n s t r u c t of s e l f , individual.  teller's  e s p e c i a l l y i n a s o c i e t y where work d e f i n e s  These consequences w i l l a l s o leave the  the  individual  having t o cope w i t h d e c l i n i n g r e s o u r c e s w h i l e managing a c h r o n i c condition. The t h i r d area of d i s r u p t i o n i s t h a t caused by the l i m i t s biomedicine.  Kaufman (1988b), i n her work on the n a r r a t i v e s  s t r o k e v i c t i m s and t h e i r expectations medicine.  care-givers,  found t h a t many of  f o r the i n d i v i d u a l t o o b t a i n the hope f o r degree of  of  the  f o r recovery were l i m i t e d by the l i m i t a t i o n s  The knowledge base or the r e s o u r c e s were not  of  of available  recovery.  The s t r u c t u r e and r e s o u r c e s a v a i l a b l e through the medical system can a f f e c t and the c u l t u r a l  both the i n d i v i d u a l s ' i l l n e s s narratives  of the medical systems l i m i t s  In Chapter VI  (Anderson 1986).  illness  The  effect  and s t r u c t u r e on the g e n e r a t i o n  an i l l n e s s account i s important narratives.  s t o r i e s of t h e i r  i n the a n a l y s i s of  of t h i s t h e s i s I  illness  show how h e a l t h  s e r v i c e d e l i v e r y produced a c o n s i s t e n t s t r u c t u r e , women's s t o r i e s and i n the c u l t u r a l  narratives  both i n  of b r e a s t  While i n d i v i d u a l s l i v e w i t h a c h r o n i c i l l n e s s , they exposed t o c o n f l i c t i n g i n t e r p r e t a t i o n s  of  of t h e i r  illness.  the cancer. are  24 Mathews et a l  (1994) found, through the i l l n e s s accounts of  women w i t h advanced b r e a s t cancer i n the southern U n i t e d t h a t the women m o d i f i e d t h e i r  black  States,  own models t o account f o r new  i n f o r m a t i o n and c o n f l i c t i n g i n t e r p r e t a t i o n s .  In some c a s e s ,  the woman's model was i n c o n f l i c t w i t h t h a t of the care  when  provider,  the woman would terminate her treatment. Lay b e l i e f s about cancer and cancer treatment are h e l d but not widely researched (Mathews et a l 1994; 1990;  Balshem 1991,  1993).  widely  Saillant  DiGiacomo (1992) has noted t h a t  p o p u l a r b e l i e f s and b i o m e d i c a l b e l i e f s about c a n c e r , and other illnesses,  are not as d i f f e r e n t as assumed.  The study of p o p u l a r  b e l i e f s p r o v i d e s i n s i g h t i n t o knowledge shared by members of society.  Paying a t t e n t i o n t o s t o r i e s of  interpretations  provides insight  conflicting  i n t o the c u l t u r a l  construction  of b r e a s t cancer i n North America.  In t h i s t h e s i s I analyze the p a r t i c i p a n t s ' stories.  I pay a t t e n t i o n t o t h e i r  and necessary r e p a i r of l i f e , biographical time,  b r e a s t cancer  d e s c r i p t i o n s of the  i n c l u d i n g t a l k about s e l f ,  social relations  and s t r u c t u r a l  insight  and shared themes, w h i l e m a i n t a i n i n g  p e r s p e c t i v e and i s s u e s of the i n d i v i d u a l .  and the c u l t u r a l  cancer i n North America ( P r i c e 1987,  the  While each s t o r y  u n i q u e , a n a l y s i s of the shared themes p r o v i d e s i n s i g h t b r e a s t cancer n a r r a t i v e s  body,  limitations.  I n d i v i d u a l accounts about l i v i n g w i t h i l l n e s s p r o v i d e into s i m i l a r i t i e s  disruption  into  c o n s t r u c t i o n of  Garro 1992,  1994).  is  breast  25  B. C u l t u r a l C o n s t r u c t i o n o f Cancer The c u l t u r a l l y c o n s t r u c t e d meaning of the a t t r i b u t i o n risk,  of  cause and a p p r o p r i a t e treatment of b r e a s t cancer a f f e c t s  the i n d i v i d u a l experience of l i v i n g w i t h the d i s e a s e . w i t h b r e a s t cancer i s exposed t o a v a r i e t y  A woman  of d i s c o u r s e s on the  causes of the d i s e a s e (such as age, r e p r o d u c t i v e h i s t o r y , p r e d i s p o s i t i o n and p e r s o n a l i t y )  and the a p p r o p r i a t e  (such as s u r g e r y , chemotherapy, r a d i a t i o n t h e r a p y , relaxation,  and l i f e s t y l e and d i e t m o d i f i c a t i o n s ) .  has f i n i s h e d treatment and i s d i s e a s e f r e e , "normal" d a i l y r o u t i n e as i f  genetic  treatments visualization, Once a woman  she r e t u r n s t o a  the d i s e a s e never o c c u r r e d , even  though she may be asked t o p r o v i d e expert knowledge t o o t h e r s or be i n v o l v e d i n o r g a n i z a t i o n s t h a t focus on b r e a s t c a n c e r . M e d i c a l a n t h r o p o l o g y , l i k e the r e s t of the d i s c i p l i n e , has developed an i n t e r p r e t i v e F i s h e r 1986,  approach (Geertz  C l i f f o r d and Marcus 1986,  1973,  Marcus and  Keesing 1987).  . . . i n t e r e s t i n the c o n t e x t u a l i z a t i o n of content w i t h i n c u l t u r a l and symbolic s t u d i e s was r e p r e s e n t e d by a renewed i n t e r e s t i n d i s c o u r s e and i n t e r p r e t a t i o n , i n the i n t e r r e l a t i o n s h i p of semantics and p r a g m a t i c s , and i n the r e l a t i o n s h i p of c u l t u r a l forms t o s o c i a l p r a x i s and the s o c i a l c o n s t r u c t i o n of r e a l i t y . (Good and Good 1981:178) The i n t e r p r e t i v e  approach i n c l u d e s the use of the s o c i a l  constructionist theoretical perspective.  From t h i s p e r s p e c t i v e ,  d i s e a s e s are p a r t of a human b e i n g ' s c o n s t r u c t i o n of her or h i s reality  (Berger and Luckman 1967).  This i s very d i f f e r e n t  from  b i o m e d i c i n e , where d i s e a s e s are d e f i n e d as g e n e r i c and u n i v e r s a l . S o c i a l c o n s t r u c t i o n i n medical anthropology and s o c i o l o g y i s an e l a b o r a t i o n of t h e o r i e s of s o c i a l l a b e l l i n g and the  26 m e d i c a l i z a t i o n of everyday l i f e .  S o c i a l l a b e l l i n g argues t h a t  the l a b e l of having a d i s e a s e and the use of t h a t legitimates  label  the i l l n e s s and the treatment the i n d i v i d u a l  (Waxier 1981a, 1981b).  receives  The i n c r e a s i n g use of medical l a b e l s has  r e s u l t e d i n the m e d i c a l i z a t i o n of everyday l i f e .  More and more  of our everyday l i f e i s becoming the domain of medicine and medical i n t e r v e n t i o n  ( I l l i c h 1975).  The s o c i a l c o n s t r u c t i o n i s t p e r s p e c t i v e allows f o r  the  examination of the s o c i a l and h i s t o r i c a l context of the of medical l a b e l s and the p r o c e s s of m e d i c a l i z a t i o n . t h i s work has examined the " a u t h o r i t a t i v e " biomedicine.  Much of  d i s c o u r s e of  The best known work i n the f i e l d  (1975) a n a l y s i s of the t r a n s i t i o n  creation  i s Foucault's  of the "gaze" of medical  p r a c t i c e from the whole body t o organ systems.  Recent medical  anthropology i n the s o c i a l c o n s t r u c t i o n of h e a l t h and i l l n e s s has i n c l u d e d work on the r e p r e s e n t a t i o n  of s o c i a l r e l a t i o n s  medical encounters  T a y l o r 1988), the  (Armstrong 1982,  development of d i s e a s e c a t e g o r i e s  (Gabbay 1982,  in  historical  Kaufert  1988),  the d i s c o u r s e s on the treatment and cause of d i s e a s e (Young Susser 1988)  and the development and c o n t r o l of medical  (Gordon 1988,  1980,  knowledge  Koenig 1988).  A n t h r o p o l o g i s t s agree t h a t " i l l n e s s c a t e g o r i e s and d i s e a s e are c u l t u r a l l y Illness  constructed"  (Lindenbaum and Lock 1993:3).  c a t e g o r i e s and d i s e a s e , i n c l u d i n g those of b i o m e d i c i n e ,  are p a r t of a c u l t u r a l between c u l t u r a l l y  system.  Gaines (1991) makes a d i s t i n c t i o n  c o n s t r u c t e d knowledge and s o c i a l l y c o n s t r u c t e d  knowledge i n medical anthropology.  The b a s i s of t h i s  distinction  27 i s t h a t c u l t u r a l c o n s t r u c t i o n i s an a n t h r o p o l o g i c a l based i n the i n t e r p r e t i v e  tradition  enterprise  of anthropology.  The c o n s t r u c t i v i s t p e r s p e c t i v e takes c u l t u r e h i s t o r y , meaning, human agency, human experience and r e s p o n s i b i l i t y as f o c a l , not ephemeral, c o n c e r n s . It seeks t o l o c a t e contemporary i l l n e s s experience i n continuous c u l t u r a l h i s t o r i c a l p r o c e s s e s which serve t o frame, i n t e r p r e t and g i v e meaning t o experience (Gaines 1991:236). The s t r e n g t h of c u l t u r a l c o n s t r u c t i o n i s t h a t i t  allows  m u l t i p l e c o n s t r u c t i o n s of an i l l n e s s or d i s e a s e t o e x i s t d i f f e r e n t c u l t u r a l systems at any p o i n t i n time. K a u f e r t and O ' N e i l ' s  (1993) a r t i c l e  on the  for  in  An example  is  different  c o n s t r u c t i o n s of the r i s k s i n v o l v e d i n c h i l d b i r t h by I n u i t women, e p i d e m i o l o g i s t s and c l i n i c i a n s i n Northern Canada. i l l n e s s s t o r i e s presented i n t h i s t h e s i s are c o n s t r u c t i o n s of b r e a s t c a n c e r .  Among the  multiple  T h i s v a r i a t i o n allows f o r an  understanding of how i n d i v i d u a l circumstances a f f e c t  construction  of the i l l n e s s e x p e r i e n c e .  1.  Cancer Metaphors  The " i l l n e s s experience i s a r t i c u l a t e d  through metaphors"  11 (Kirmayer  1992:323)  .  Metaphors p r o v i d e a way of understanding  one type of experience i n terms of another s e t of experiences (Lakoff  and Johnson 1980).  Therefore,  i n t h i s t h e s i s much of  the  c u l t u r a l c o n s t r u c t i o n of b r e a s t cancer w i l l come from e x p l o r i n g  I t i s i n t e r e s t i n g t o note t h a t i l l n e s s e s have been used as metaphors t o d e s c r i b e changes i n s o c i e t y (Sontag 1978). Negative elements, such as c r i m e , t h a t are p o r t r a y e d as growing out of c o n t r o l are d e s c r i b e d as b e i n g a cancer of s o c i e t y . Metaphors are a l s o used i n b i o m e d i c i n e , such as the human body being d e s c r i b e d as a machine (Osherson and AmaraSingham 1981).  28 m e t a p h o r i c a l d e s c r i p t i o n s of cancer and the cancer e x p e r i e n c e . The predominant metaphor,  although not always d i s c u s s e d ,  t h a t of a d i a g n o s i s of cancer as a death sentence 1987).  (Patterson  The f e a r of death i s the predominant f e a t u r e  cancer s t o r i e s .  It  is  of  breast  a l s o p r o v i d e s a s t a r t i n g p o i n t f o r an  understanding of the g e n e r a t i o n of other metaphors used t o d e s c r i b e the cancer e x p e r i e n c e . In North America m i l i t a r y  metaphors are used predominantly  t o d e s c r i b e both cancer and i t s treatments  (Sontag 1978).  Kleinman (1980:108) p o i n t s out t h a t war metaphors have been i n c o r p o r a t e d i n t o western b i o m e d i c a l d i s c o u r s e s i n c e the H i p p o c r a t i c Corpus. familiar  Examples s p e c i f i c t o cancer i n c l u d e the  slogan of the Canadian Cancer S o c i e t y t h a t "Cancer can  be beaten" and the d e c l a r a t i o n of the "War on cancer" by the U n i t e d S t a t e s of America i n the N a t i o n a l Cancer A c t of (Erwin 1987,  1971  P a t t e r s o n 1987).  Erwin (1985, 1987)  d i s c u s s e s the e f f e c t  of  military  metaphors and terminology i n cancer treatment on the c o n s t r u c t i o n of c a n c e r .  Cancer i s seen as the enemy.  i n the war and o f f e r hope of v i c t o r y . doctors' arsenal. fight  The p a t i e n t  and t r y i n g not t o l e t  Doctors are the  Treatments are  leaders  the  i s the s o l d i e r , p u t t i n g up a good  h i s / h e r f e a r show t o f a m i l y members  12 or o t h e r s T h e r e f o r e , the t h e r a p e u t i c r i t u a l of medical m i l i t a r i z a t i o n i s a c u l t u r a l adaptation f o r patients and f a m i l y members t o manage the cancer e x p e r i e n c e , t o 12  DeSantis (1979) found t h a t the women i n her study t r i e d t o put on a brave face when o t h e r s , e s p e c i a l l y f a m i l y members, were seen as being w o r r i e d . I found a s i m i l a r s t r a t e g y d e s c r i b e d by the women I i n t e r v i e w e d i n 1987.  29 become a p a r t of the courageous army f i g h t i n g the enemy c a n c e r , m a i n t a i n i n g as many normal r o l e s as p o s s i b l e , and becoming an " i n s p i r a t i o n " f o r other p a t i e n t s and people i n the community. (Erwin 1987:213) Erwin (1987) d e s c r i b e s m i l i t a r i z a t i o n of the p a t i e n t ,  as a " c u l t u r a l  adaptation"  f a m i l y and p h y s i c i a n f o r managing the cancer  experience. The use of m i l i t a r y metaphors p r o v i d e s the p o s s i b i l i t y victory.  T h i s i s p a r t of the attempt t o change the meaning of  cancer from a death sentence t o a s u r v i v a b l e d i s e a s e 1990).  of  T h i s change has been r e f l e c t e d  i n a growing  t h a t t a l k s about the concerns of cancer s u r v i v o r s  (Gordon literature  (Dow  1990,  Hoffman 1989a, Mullen 1985), as w e l l as i n the popular d i s c o u r s e on cancer treatment 1978,  (Seigel  Cunningham 1992).  It  1986,  Cousins 1989,  Simmonton et  i s a l s o seen i n the growth of  groups and other s e r v i c e s f o r cancer s u r v i v o r s and  al  support  their  families.  a . C o n s t r u c t i o n of a D i s c o u r s e of Hope Stemming from t h i s use of m i l i t a r y metaphors, w i t h the inherent cure,  p o s s i b i l i t y of v i c t o r y ,  or at l e a s t  i s an element of hope f o r a  f o r a f u t u r e l i f e worth l i v i n g . T h i s concept of  hope i s not only present i n the p o p u l a r d i s c o u r s e on c a n c e r , a l s o i n the b i o m e d i c a l d i s c o u r s e . DelVecchio Good et a l 1990)  DelVecchio Good (1991,  found i n a study of American oncology  t h a t the b i o m e d i c a l d i s c o u r s e on cancer c o n t a i n s a c o n s t r u c t i o n of "hope". patient's  particular  Hope i s d e f i n e d s i m p l i s t i c a l l y as the  positive attitude,  with therapy.  but  fighting s p i r i t  and c o - o p e r a t i o n  T h i s meaning of hope i s grounded i n a p o p u l a r  30 c o n s t r u c t i o n of the r e l a t i o n s h i p between mind and body, where the power of thought can i n f l u e n c e the f u n c t i o n i n g of the body,  in  p a r t i c u l a r by s t r e n g t h e n i n g the immune system (Cousins 1989, Cunningham 1992).  When questioned about how they m a i n t a i n hope  in their patients,  the o n c o l o g i s t s i n Good's sample i n d i c a t e d the  importance of e s t a b l i s h i n g a p a r t n e r s h i p w i t h t h e i r p a t i e n t s , they can p a r t i c i p a t e  fully  i n the treatment p r o t o c o l .  so  This  p a r t n e r s h i p demanded a c e r t a i n l e v e l of p h y s i c i a n d i s c l o s u r e , e s p e c i a l l y f o r those treatments serious side e f f e c t s .  t h a t were t o x i c and c o u l d have  But f u l l d i s c l o s u r e , p a r t i c u l a r l y when  p r o g n o s i s was p o o r , was not always seen as t h e r a p e u t i c . Although d i s c l o s u r e of i n f o r m a t i o n i s seen as b e i n g c e n t r a l t o m a i n t a i n i n g hope i n the U n i t e d S t a t e s , t h i s i s not the case i n other c o u n t r i e s . In Japan (Long and Long 1982) terminal  patients  with  cancer are not t o l d they have c a n c e r , although the 13  f a m i l i e s are t o l d the p r o g n o s i s . Japanese c o n s t r u c t i o n of d y i n g .  This i s attributed  to  the  Dying " w e l l " i s d y i n g q u i e t l y ,  whereas a death from cancer i s conceived as b e i n g prolonged and painful  (Long and Long 1982).  In I t a l y  (Gordon 1990,  1991; Gordon et a l 1991)  p a t i e n t s are not t o l d they have c a n c e r . t h a t , because cancer i s seen as t e r m i n a l ,  as w e l l ,  Gordon argues (1990) informing a patient  would be tantamount t o p r o c l a i m i n g them s o c i a l l y dead.  Gordon  T h i s does not mean t h a t p a t i e n t s do not know they have cancer and are going t o d i e , but r a t h e r t h a t they are never t o l d and do not t a l k about i t (Long and Long, 1982). Kleinman (1988) r e l a t e s a s t o r y o f g o i n g t o v i s i t a f r i e n d , a Taiwanese p h y s i c i a n who Kleinman knew was d y i n g of c a n c e r . The f r i e n d , even though he was a d o c t o r , never spoke about the cancer and a c t e d as i f he d i d not know the d i a g n o s i s . X J i  31 c a u t i o n s t h a t t o t a l p a t i e n t d i s c l o s u r e of cancer d i a g n o s i s and p r o g n o s i s i s an American c u l t u r a l I t a l i a n context  it  c o n s t r u c t i o n , and i n  would be d e v a s t a t i n g  In a p r o v i n c i a l c a p i t a l  f o r the  the  patient.  i n southern Mexico, Hunt  (1994)  found t h a t p h y s i c i a n s engage i n an extreme form of d i s c l o s u r e , which i s extremely  frank and b l u n t .  frank d i s c l o s u r e persuades p a t i e n t s undergoing p r o h i b i t i v e l y treatments.  As w e l l ,  The p h y s i c i a n s c l a i m  this  of the n e c e s s i t y of  c o s t l y and sometimes  unavailable  the frank and a u t h o r i t a t i v e manner of  d i s c l o s u r e may be exaggerated because of c l a s s d i f f e r e n c e s between p h y s i c i a n s and p a t i e n t s  and the l i m i t e d p r e s t i g e of  medical p r o f e s s i o n and b i o t e c h n o l o g y i n t h i s p a r t i c u l a r (DelVecchio Good et a l  the  context  1993).  In Canada, as i n the U n i t e d S t a t e s ,  t h e r e has been a change  i n the p o p u l a r and b i o m e d i c a l d i s c o u r s e from cancer as being a death sentence t o cancer as being s u r v i v a b l e . For Yvette Tremblay, cancer as a symbol of death was remote from her experience at the t i m e . By c o u n t i n g h e r s e l f among those persons whose cancer had been "caught i n time" [ p r i s a temps], Y v e t t e Tremblay became a " s u r v i v o r " a f t e r her s u r g e r y . Quite d i s t i n c t i n p o r t r a y a l from the t e r m i n a l phase, s u r v i v a l p r o v i d e s the l o c u s f o r the new d i s c o u r s e of c a n c e r . T h i s new d i s c o u r s e i s accompanied by c e r t a i n t a c t i c s i n exchanges between p a t i e n t s and p r a c t i t i o n e r s (Saillant 1990:88). Changes i n d i s c o u r s e promote the development of new metaphors surrounding the concepts of s u r v i v a l and hope f o r the  future.  b. The Causes of Cancer The c u l t u r a l  c o n s t r u c t i o n of cancer c o n t a i n s two  other  prominent themes i n both the b i o m e d i c a l and popular d i s c o u r s e s :  32 the r i s k of g e t t i n g cancer.  or d y i n g from cancer and the causes of  The study of b e l i e f s about the causes of i l l n e s s i s  the  b a s i s of ethnomedicine and has a long h i s t o r y i n medical anthropology  (Young 1982).  of r i s k of g e t t i n g  However,  the study of the  an i l l n e s s i s much more  recent.  The p e r c e p t i o n of r i s k i s c o n s t r u c t e d w i t h i n a cultural  framework  in that  11  .  .  perception  . the c u l t u r a l  particular  p r o c e s s e s which  s e l e c t c e r t a i n k i n d s of dangers f o r a t t e n t i o n work through institutional 1985).  procedures f o r a l l o c a t i n g r e s p o n s i b i l i t y "  In the i l l n e s s n a r r a t i v e ,  (Douglas  the c o n s t r u c t i o n of being  r i s k i s one way of accounting f o r the p e r s o n a l experience  at  of  illness. Gifford  (1986) has i d e n t i f i e d  a distinction  between  e p i d e m i o l o g i c a l , c l i n i c a l medical and p o p u l a r concepts of r i s k of g e t t i n g b r e a s t c a n c e r . of g e t t i n g b r e a s t cancer i s  11  .  For the e p i d e m i o l o g i s t , .  .an  objective,  the  risk  scientific  concept which d e s c r i b e s r e l a t i o n s h i p s w i t h i n l a r g e (Gifford  the  populations"  1986:238).  For the c l i n i c a l medical p r a c t i t i o n e r uncertainty  r i s k r e p r e s e n t s an  of d i a g n o s i s , which can be manipulated and c o n t r o l l e d  through treatment of the i n d i v i d u a l or the d i s e a s e d organ. Gifford  (1986) argues t h a t t h i s c l i n i c a l medical concept of  risk  predominates i n both the p r a c t i c e of medicine and c l i n i c a l research.  T h i s predominance has the e f f e c t  of m e d i c a l i z i n g  and d i r e c t i n g the c l i n i c a l gaze toward the treatment of individual rather historical,  than examining cancer r i s k i n the  social,  political  and environmental  the  broader  context.  risk  Gifford  (1986)  i d e n t i f i e d the popular concept o f the r i s k of  g e t t i n g b r e a s t cancer as grounded i n the p e r s o n a l experience o f having symptoms t h a t may be l i n k e d t o c u r r e n t o r f u t u r e health.  ill  Other r e s e a r c h e r s (Dornheim 1991; Balshem 1991, 1993)  have a l s o found t h a t popular concepts of the r i s k o f  getting  cancer are r e l a t e d t o the i n d i v i d u a l experience o f having symptoms o r of knowing someone who has the d i s e a s e .  In t h i s way,  the r i s k o f g e t t i n g an i l l n e s s i s l i n k e d t o the understanding o f what may cause a p a r t i c u l a r  illness.  The causes o f i l l n e s s are  c u l t u r a l l y c o n s t r u c t e d and expressed m e t a p h o r i c a l l y . As w i t h the c o n s t r u c t i o n of hope, e x p l a n a t i o n s o f the r i s k of g e t t i n g cancer vary c r o s s - c u l t u r a l l y .  F o r example,  Dornheim  (1991) found t h a t i n Germany, cancer has been a t t r i b u t e d c h a r a c t e r i s t i c s o f t u b e r c u l o s i s , such as b e i n g " i n f e c t i o u s " and "hereditary".  The r e s u l t i n g behaviour i s t o t r y and d i s t a n c e  o n e s e l f from anyone s u f f e r i n g from c a n c e r , t o h i d e v i s i t s t o the d o c t o r f o r check ups and t o not d i s c l o s e a d i a g n o s i s of c a n c e r . In the U n i t e d S t a t e s ,  DeSantis (1979)  women were concerned t h a t t h e i r cancer,  1 4  found t h a t ,  although  daughters would a l s o get b r e a s t  t h e r e was no concern about c o n t a g i o n o r i n f e c t i o n .  In a study examining middle-aged women's concept o f d i s e a s e in Scotland, Blaxter  (1983)  without a t t r i b u t i n g a c a u s e .  found t h a t cancer was d i s c u s s e d She concluded t h a t cancer was a  dreaded d i s e a s e and s p e c u l a t i o n on the cause was " . . . not o n l y fruitless,  i n 1987.  I  on the whole, but a l s o uncomfortable"  found a s i m i l a r concern among the women I  (Blaxter  interviewed  34 1983:67).  Mathews et a l  (1994) found a s i m i l a r s i t u a t i o n among  b l a c k women i n the southern U n i t e d S t a t e s , where the cause of cancer was not of much i n t e r e s t .  In these c a s e s , t h e r e  is a  p r e f e r e n c e f o r c o n s i d e r i n g the cause of cancer as being random. The women gave the impression of p r e f e r r i n g t o b e l i e v e t h a t cancer was q u i t e randomly caused: " i t c o u l d happen t o anyone". But w h i l e they f i r m l y r e j e c t e d any i d e a of r e s p o n s i b i l i t y , p a r t of the t e r r o r of the d i s e a s e was simply t h a t i t was mysterious ( B l a x t e r 1983:66). Two s t u d i e s , i n England (Cornwall States  (Balshem 1991,  1993)  1984)  United  of working c l a s s communities'  i n the causes of i l l n e s s found a d i f f e r e n t cause of c a n c e r .  and the  p e r c e p t i o n of  beliefs the  In both s t u d i e s cancer was seen as being  present i n a minute form i n everyone, r e q u i r i n g only some k i n d of trigger  to s t a r t  it  growing.  These t r i g g e r s c o u l d be an  or a s t r e s s f u l p e r i o d of l i f e  15  injury  .  The most common e x p l a n a t i o n of cancer i n p u b l i c t h e o r i e s however, i n v o l v e d a combination of i n t e r n a l p r e d i s p o s i t i o n towards the d i s e a s e and some k i n d of e x t e r n a l " t r i g g e r " or shock which p r e c i p i t a t e s onset of disease. Many people expressed the view ( a t t r i b u t e d t o cancer) t h a t everyone has cancer and cancer p a t i e n t s are simply the unlucky ones i n whom the d i s e a s e i s a c t i v a t e d (Cornwall 1984:158). It  i s i n t e r e s t i n g t o note t h a t Cornwall found one of  t r i g g e r s noted was medical i n t e r v e n t i o n ; a threat to health. surgery i n p a r t i c u l a r (Mathews et a l 1994,  the  medicine was seen t o be  In other s t u d i e s , concern was expressed t h a t c o u l d c o n t r i b u t e t o the spread of cancer Gregg and Curry 1994).  Environmental c a r c i n o g e n s as a cause of cancer seem t o be a growing c o n c e r n .  Patterson  (1987) noted t h a t t h i s concern began  Young (1980) has looked at the development of the concept of s t r e s s as a cause of i l l n e s s .  35 i n the l a t e 1970's.  A number of s t u d i e s i n d i c a t e t h a t people  a t t r i b u t e cancer t o the p h y s i c a l environment  (Salzberger  1976,  Dornheim 1991), but f o r the most p a r t the causes of cancer are l i n k e d more t o the Chavez et a l  individual. (1995) d i d r e s e a r c h on the c o n c e p t s , among f o u r  d i f f e r e n t e t h n i c groups i n the U n i t e d S t a t e s ,  of the r i s k and  causes of b r e a s t and c e r v i c a l cancer and compared them with the concepts of p h y s i c i a n s . c u l t u r a l models of r i s k .  They concluded t h a t t h e r e are  multiple  They found t h a t Mexican and E l  Salvadoran immigrants h e l d models widely d i v e r g e n t  from those of  p h y s i c i a n s , t h a t Anglo women's models were the c l o s e s t t o those of p h y s i c i a n s , and t h a t Chicano women's models f e l l somewhere between.  Of i n t e r e s t  in  i s t h a t models of the r i s k s and causes of  b r e a s t cancer are embedded i n a c u l t u r a l  context,  much l i k e  those  of other i l l n e s s e s . In the p o p u l a r d i s c o u r s e , the r i s k of g e t t i n g  cancer i s  o f t e n a t t r i b u t e d t o p e r s o n a l c h a r a c t e r i s t i c s such as smoking, diet,  g e n e r a l h e a l t h and p e r s o n a l i t y  of r i s k t o p e r s o n a l c h a r a c t e r i s t i c s , much as i t  .  Through the  r i s k becomes i n d i v i d u a l i z e d ,  i s i n c l i n i c a l medical p r a c t i c e .  r i s k of g e t t i n g  attribution  Individualizing  the  cancer transforms a d i s e a s e u n c o n t r o l l a b l e by  medical technology i n t o one t h a t the i n d i v i d u a l can c o n t r o l . c o n t r o l comes from the a b i l i t y  of the i n d i v i d u a l t o change  Sontag (1978) d e s c r i b e s the d i f f e r e n t p e r s o n a l i t y types t h a t were l i n k e d t o cancer and t u b e r c u l o s i s i n the b e g i n n i n g of the c e n t u r y . T u b e r c u l o s i s was l i n k e d with the s e n s i t i v e and a r t i s t i c person and cancer w i t h the person who r e p r e s s e d t h e i r emotions and anger (see a l s o Canadian B r o a d c a s t i n g C o r p o r a t i o n 1990) .  The  p e r s o n a l c h a r a c t e r i s t i c s and t h e r e f o r e getting  t o a l t e r the r i s k  of  or dying from the d i s e a s e .  Balshem found t h a t , d e s p i t e r e l a t i n g characteristics,  r i s k to personal  i n d i v i d u a l s would o f t e n r e f e r  person who " . . .  t o the  smoked two packs of c i g a r e t t e s  defiant  a day,  ate  nothing but l a r d and b r e a d , never went t o the d o c t o r , and l i v e d t o the age of 93"  (1991:162).  These same i n d i v i d u a l s were  a t t r i b u t e d the c h a r a c t e r i s t i c s of hard workers who kept a positive attitude,  not d w e l l i n g on i l l n e s s .  T h i s c o u l d be  thought of as a l i n k t o the b i o m e d i c a l theme of hope d i s c u s s e d earlier: positive  the a b i l i t y  t o f i g h t a g a i n s t the odds and maintain a  outlook.  The concept of r i s k i s i n d i v i d u a l i z e d i n both the and popular d i s c o u r s e s . sufferers,  their  Individualization  may p r o v i d e cancer  f a m i l i e s and medical p r a c t i t i o n e r s  t h a t cancer can be c o n t r o l l e d through i n t e r v e n t i o n personal world.  However,  biomedical  w i t h the hope in  the  t h i s d i s c o u r s e of hope a l s o reduces the  understanding of the s o c i a l ,  political  and economic contexts  cancer. . . . the r o l e of ' s t r e s s ' , d i e t or p h y s i c a l environment i n the i n c i d e n c e of c a r d i o v a s c u l a r d i s e a s e or cancer i s conceived of i n such i n d i v i d u a l i z e d terms as ' p e r s o n a l i t y ' and ' l i f e - s t y l e ' . Such r e d u c t i o n s not only extend the moral o r b i t of medical j u r i s d i c t i o n and s h i f t the c u l p a b i l i t y of i l l n e s s more s e c u r e l y upon the victim; they a l s o p r e c l u d e adequate c o n s i d e r a t i o n of deeper s o c i o - c u l t u r a l p r o c e s s e s of which ' s t r e s s ' and 'unhealthy h a b i t s ' are but symptoms. (Comaroff 1982:6263)  of  37 c . U n c e r t a i n t y and the Future As noted e a r l i e r ,  interest  growing i n North A m e r i c a .  i n the s u r v i v o r s of cancer i s  S u r v i v a l becomes an i s s u e a f t e r  treatments have been completed.  Then the person who has had a  d i a g n o s i s of cancer i s expected t o continue l i f e own, t o get back t o "normal".  T h i s i s a l s o the case w i t h many  o t h e r c h r o n i c i l l n e s s e s , such as a r t h r i t i s 1975).  on h i s or her  (Bury 1988,  Wiener  I n d i v i d u a l s develop s t r a t e g i e s f o r p r e s e n t i n g themselves  and t h e i r  l i v e s as normal, or back t o normal.  d i a g n o s i s of c a n c e r , l i f e  However, a f t e r  a  i s never r e a l l y the same as b e f o r e ,  because of the chance of a r e c u r r e n c e of the cancer which r e s u l t s i n u n c e r t a i n t y about the f u t u r e .  Comaroff and Maguire  (1981)  d e s c r i b e d p a r e n t s ' a n x i e t y each time t h e i r c h i l d r e n w i t h leukaemia went i n f o r t e s t s . The f u t u r e was u n c e r t a i n . as an i n a b i l i t y  They f e l t h o p e l e s s and f r i g h t e n e d .  The u n c e r t a i n t y c r e a t e d problems, such  t o p l a n and f e e l i n g s of v u l n e r a b i l i t y ,  as w e l l as  o p p o r t u n i t i e s t o r e f o c u s p r i o r i t i e s and change the d i r e c t i o n of one's l i f e  (Quigley 1989).  O n c o l o g i s t s d e a l w i t h the u n c e r t a i n t y of cancer by f o c u s i n g the p a t i e n t s '  concerns on the p r e s e n t r a t h e r than the  (DelVecchio Good et a l 1994). r e s t r u c t u r i n g of t i m e .  future  They do t h i s through a  In t h i s t h e s i s the  participants  r e s t r u c t u r e d or rewrote p e r s o n a l time i n a s i m i l a r way through the use of metaphors about the importance of the p r e s e n t compared t o the unknown of the  future.  Much of the p o p u l a r l i t e r a t u r e  on s u r v i v i n g a d i a g n o s i s of  b r e a s t cancer c o n s i s t s of s t o r i e s about making the b e s t of  this  38 uncertainty, the f u l l e s t  making changes i n o n e ' s l i f e or j u s t l i v i n g l i f e (Ralph 1994,  MacPhee 1994). future.  It  R o l l i n 1976,  W i l l i a m s 1993,  Crowie  T h i s d i s c o u r s e i s one of c r e a t i n g hope f o r  i s o p t i m i s t i c and l o o k i n g t o a f u t u r e  The model of hope f o r the f u t u r e p a r t i c u l a r c u l t u r a l context, the models of r i s k ,  full  of  to  1994, the  life.  i s constructed within a  and one would expect t h a t ,  as w i t h  t h e r e would be m u l t i p l e models.  C. Conclusion In t h i s t h e s i s I analyze the b r e a s t cancer s t o r i e s presented w i t h i n i n t e r v i e w s of women who have had a d i a g n o s i s of b r e a s t cancer.  Although each i n d i v i d u a l ' s s t o r y i s u n i q u e , common  s t r u c t u r e s and themes run t h r o u g h o u t . ( G a r r o 1994).  The c u l t u r a l  c o n s t r u c t i o n of cancer i s r e p r e s e n t e d i n these commonalities. the a n a l y s i s I The f i r s t  In  look f o r these commonalities i n f o u r main a r e a s . i s the n a r r a t i v e  s t r u c t u r e of the s t o r y .  most i n t e r e s t e d i n the case where the n a r r a t i v e  I am  structure  e l a b o r a t e s a shared understanding about the experience of having 17 had a d i a g n o s i s of b r e a s t cancer  .  T h i s occurs i n the  e l a b o r a t i o n of the s t o r y of d i a g n o s i s and treatment i n Chapter VI. The second area i s the use of the concept of d i s r u p t i o n , r e p a i r and b i o g r a p h i c a l work (Williams  1984,  Bury 1982)  to  think  about the important themes presented i n the b r e a s t cancer accounts.  I  look f o r the r e c o n s t r u c t i o n of s e l f through the  I do not analyze the n a r r a t i v e s as speech a c t s , r a t h e r analyze the content of the n a r r a t i v e s .  but  39 r e c o n s t r u c t i o n of body and i d e n t i t y b i o g r a p h i c a l time. the s t o r y t e l l e r story.  I a l s o look at the s o c i a l context  e x i s t s and how t h i s a f f e c t s  In p a r t i c u l a r ,  c o n s t r u c t i o n of  (Bury 1982)  and the  t o r e c o n s t r u c t s e l f and time (Kaufman 1988b).  The t h i r d area of focus i s the metaphors used i n  use of metaphors.  This i s p a r t i c u l a r l y  interest  relevant  the  with cancer.  Of  i s the use of the metaphors of cancer as a  death sentence and "cancer can be b e a t e n " , inherent  the  Much b i o g r a p h i c a l r e c o n s t r u c t i o n i s done through  particular  the  imposed by such f a c t o r s as economics and biomedicine  on the a b i l i t y  stories.  i n which  I examine the d i s r u p t i o n i n s o c i a l  r e l a t i o n s h i p s caused by the i l l n e s s limitations  and the r e c o n s t r u c t i o n of  and whether  this  contradiction i s resolved.  The f i n a l  area i s how women who have had a d i a g n o s i s of  b r e a s t cancer c o n s t r u c t models of hope f o r the f u t u r e , cause, and how they d e a l w i t h u n c e r t a i n t y . interested  r i s k and  I am p a r t i c u l a r l y  i n how the women l i n k these concepts t o g e t h e r  to  form  s t o r i e s t h a t have some coherence. The a n a l y s i s of common n a r r a t i v e  structures,  metaphors and  themes i n the s t o r i e s p r o v i d e s i n s i g h t i n t o the s t r u c t u r e content of b r e a s t cancer n a r r a t i v e s . presented i n t h i s  thesis.  These n a r r a t i v e s  are  and  40 Chapter III  - Research Methods  Researching the experience of women l i v i n g w i t h a d i a g n o s i s of b r e a s t cancer I  interviewed  32 women who have completed  treatment f o r a primary d i a g n o s i s of b r e a s t c a n c e r . two s e t s of d a t a . interviews  The f i r s t  There  are  s e t c o n t a i n s 29 open-ended  done w i t h women who had completed treatment f o r  d i s e a s e at l e a s t one year a f t e r d i a g n o s i s and who had no  the further  18 evidence of the d i s e a s e (Waxier-Morrison participants  et a l n.d.)  .  These  had been diagnosed w i t h cancer but have a good  p r o g n o s i s , Stage I or II  d i s e a s e (see Chapter  IV).  T h i s sample was l i m i t e d t o women who l i v e d i n the Lower 19 Mainland  .  The 29 p a r t i c i p a n t s  came from a s t r a t i f i e d  random  sample s e l e c t e d from the r e c o r d s of the B r i t i s h Columbia Cancer . 20 Agency, Vancouver C l i n i c  .  The Vancouver C l i n i c t r e a t s  women i n mainland B r i t i s h Columbia who r e q u i r e  all  radiation  treatment, as w e l l as many who do n o t . The sample was s t r a t i f i e d  by time passed s i n c e completing  treatment. Nine women were s e l e c t e d from those who had completed These i n t e r v i e w s were done as p a r t of "Cancer Survivorship: The P s y c h o s o c i a l Experiences i n Breast Cancer" conducted by Dr. N. Waxier-Morrison ( p r i n c i p a l i n v e s t i g a t o r ) , Dr. T . G . H i s l o p and Mr. R. D o l l ( c o - i n v e s t i g a t o r s ) and funded by the B r i t i s h Columbia H e a l t h Research Foundation Grant No. 170(92-1). I was the p r o j e c t c o o r d i n a t o r . 19 The Lower Mainland i n c l u d e s the c i t y of Vancouver, i t s suburbs, and the lower v a l l e y of the F r a s e r R i v e r . T h i s was done t o reduce i n t e r v i e w e r t r a v e l c o s t s and t i m e . 20 T h i r t y i n t e r v i e w s were completed. However one p a r t i c i p a n t d e c l i n e d t o have the i n t e r v i e w taped and s i n c e the i n t e r v i e w was by the other i n t e r v i e w e r , I d i d not i n c l u d e i t i n this analysis.  41 treatment up t o one year b e f o r e s e l e c t i o n , ten from those who had completed treatment two t o t h r e e years b e f o r e ,  and t e n from those  who had completed treatment f o u r t o f i v e years b e f o r e . sample was a l s o s t r a t i f i e d  by age, w i t h 13 women b e i n g under age .  50,  and 16 over age 50 at the time of d i a g n o s i s The procedure f o r c o n t a c t i n g p a r t i c i p a n t s  identification  of women e l i g i b l e t o p a r t i c i p a t e  c h a r t s at the B r i t i s h Columbia Cancer Agency. were  The  21  .  began w i t h the from a review  of  F i f t y - o n e women  identified. A l e t t e r was sent t o each woman's d o c t o r t o inform him/her  about the r e s e a r c h and t o check t h a t the woman was s t i l l  disease  22  free  .  of t h e i r  Doctors i d e n t i f i e d cancer.  t h r e e women who have had a r e c u r r e n c e  These women were excluded from the sample.  Then a l e t t e r was sent t o the remaining women, d e s c r i b i n g the p r o j e c t  and i n c l u d i n g a consent form they c o u l d r e t u r n  they wanted t o p a r t i c i p a t e .  Women who were not heard  r e c e i v e d f o l l o w - u p phone c a l l s .  if  from  Three women had moved and c o u l d  not be l o c a t e d . Fourteen women chose not t o p a r t i c i p a t e  i n the r e s e a r c h .  Some of the reasons f o r not wanting t o p a r t i c i p a t e  i n c l u d e d being  T h i s sample i s s t i l l s l i g h t l y b i a s e d toward those women under 50. There are more cases of b r e a s t cancer i n women over 50 than under 50. Estimated new cases of b r e a s t cancer i n Canada i n 1995 f o r women 49 and under are 4,130 and f o r women 50 and over i s 13,600 ( N a t i o n a l Cancer I n s t i t u t e of Canada 1995). In t h i s r e s e a r c h i t was e a s i e r t o f i n d and r e c r u i t younger women than o l d e r women. 22  T h i s i s a standard procedure w i t h r e s e a r c h p r o t o c o l s the B r i t i s h Columbia Cancer Agency ( H i s l o p , p e r s o n a l communication).  at  42 u n w e l l , b e i n g too busy or not wanting t o t a l k about  their  experience. As h a l f the women i n the sample were over the age of 50 and had m u l t i p l e h e a l t h problems, i t  was expected t h a t some would  choose not t o p a r t i c i p a t e because of i l l  health,  although a  number of the p a r t i c i p a n t s i n the r e s e a r c h d i d have h e a l t h problems u n r e l a t e d t o the cancer d i a g n o s i s . Many of the p a r t i c i p a n t s s a i d they d i d not t a l k much about t h e i r d i a g n o s i s any more.  G e t t i n g over the d i a g n o s i s and g e t t i n g  on w i t h l i f e was an important p a r t of h e a l i n g . r e s u l t e d i n some women choosing not t o It  T h i s may have  participate.  was t o my advantage t o be a b l e t o use a random sample of  p a r t i c i p a n t s , as I was a b l e t o i n t e r v i e w women who had a broader range of experiences than i f  I had had t o sample women i n another  way, such as r e q u e s t i n g p a r t i c i p a t i o n through a n e w s l e t t e r support group. participate  or  Many of the p a r t i c i p a n t s i n d i c a t e d they d i d not  i n support groups or s u b s c r i b e t o n e w s l e t t e r s  various organizations dealing with breast cancer. had no way of r e a c h i n g them t o p a r t i c i p a t e  from  I would have  i n t h i s research  ,23 project T h i s r e s e a r c h focused on the c o n s t r u c t i o n of cancer i n mainstream c u l t u r e and d i d not focus on e t h n i c m i n o r i t i e s . majority  The  of the p a r t i c i p a n t s came from European backgrounds.  In a study of t e s t i c u l a r c a n c e r , p a r t i c i p a n t s were r e c r u i t e d through a "snowball t e c h n i q u e " , s t a r t i n g w i t h p a t i e n t s from o n c o l o g i s t s ' o f f i c e s and from announcements and advertisements (Brodsky 1995). The p a r t i c i p a n t s i n t h i s study used predominantly what I have r e f e r r e d t o as cancer as a p o i n t of change schema, and showed much l e s s v a r i a t i o n .  43  There was one A s i a n and another from L a t i n A m e r i c a .  Also,  the  m a j o r i t y were from the middle s o c i o - e c o n o m i c c l a s s , w i t h a few being from a h i g h e r s o c i o - e c o n o m i c c l a s s .  It  i s important t o do  r e s e a r c h on mainstream c u l t u r a l p e r c e p t i o n s b e f o r e going on t o study other e t h n i c groups.  Otherwise, b i o m e d i c a l c o n s t r u c t s of  d i s e a s e are used as a p o i n t of comparison and almost g i v e n a t r u t h v a l u e , and popular c o n s t r u c t s are ignored (DiGiacomo 1992). I was one of two i n t e r v i e w e r s . interviews,  I conducted 2 0 of the 29  and the other i n t e r v i e w e r  d i d the r e s t .  The m a j o r i t y  of the i n t e r v i e w s took p l a c e i n the p a r t i c i p a n t s ' homes.  Those  p a r t i c i p a n t s who i n v i t e d us i n t o t h e i r homes t r e a t e d us l i k e guests, o f f e r i n g tea,  c o f f e e and something t o  eat.  Four i n t e r v i e w s were done at the Vancouver C l i n i c of B r i t i s h Columbia Cancer Agency.  the  Most o f t e n we were a b l e t o use  the room i n the Family and P a t i e n t S e r v i c e s Department  where  support group meetings are h e l d , which was i n a d i f f e r e n t from the examination and treatment  area  rooms.  The i n t e r v i e w s were open-ended, l e a v i n g the p a r t i c i p a n t s t a l k about t h e i r e x p e r i e n c e s .  The i n t e r v i e w e r s u s u a l l y  by a s k i n g , "When were you diagnosed w i t h b r e a s t cancer? you t e l l me what happened?"  started Could  T h i s p r o v i d e d the o p p o r t u n i t y  the p a r t i c i p a n t s t o t e l l t h e i r  to  for  s t o r i e s of d i a g n o s i s and  treatment. After t e l l i n g their  s t o r i e s , the p a r t i c i p a n t s were  encouraged t o t a l k about what had happened s i n c e they had completed treatment. interviewer  if  A number of t o p i c s were i n t r o d u c e d by the  they d i d not come up d u r i n g the c o n v e r s a t i o n (see  44 Appendix I ) ,  i n c l u d i n g r e l a t i o n s with f a m i l y and f r i e n d s ,  job  experiences, r e l a t i o n s with health p r o f e s s i o n a l s , personal concerns and h e a l t h .  Any other s u b j e c t s brought up by the  p a r t i c i p a n t s were a l s o e x p l o r e d . The i n t e r v i e w s l a s t e d anywhere from one hour t o w e l l two h o u r s .  They were a u d i o - t a p e d and then t r a n s c r i b e d .  over I had  access t o the a u d i o - t a p e s , t r a n s c r i p t s and f i e l d n o t e s from a l l interviews  29  for this analysis.  The second s e t of data c o n s i s t s of t h r e e i n - d e p t h case 24 studies  r e c r u i t e d through a p o s t - t r e a t m e n t  support group run by  P a t i e n t and Family S e r v i c e s at the B r i t i s h Columbia Cancer Agency 25 f o r women who have had a d i a g n o s i s of b r e a s t cancer of these  .  I did  all  interviews.  Sue Cannon (1989) wrote about the moral dilemmas of i n t e r v i e w i n g women w i t h b r e a s t c a n c e r .  U n l i k e the  participants  i n Cannon's work, most of these p a r t i c i p a n t s had a good p r o g n o s i s and were r e l a t i v e l y w e l l at the time of the s t u d y . faced w i t h an impending d e a t h .  As w e l l ,  We were not  the c o n t a c t p e r i o d was  much s h o r t e r and r e l a t i o n s h i p s d i d not become as c l o s e . However, the q u e s t i o n remains about the p o t e n t i a l b i a s of i n t e r v i e w i n g women, e s p e c i a l l y when they may see the as coming from an i n s t i t u t e 24  interviewer  from which they have r e c e i v e d c a r e  O r i g i n a l l y t h e r e were f o u r case s t u d i e s . However, one p a r t i c i p a n t withdrew from p a r t i c i p a t i o n due t o h e a l t h problems r e s u l t i n g from her treatment f o r b r e a s t c a n c e r . 25 . • • . I obtained p e r m i s s i o n from the B r i t i s h Columbia Cancer Agency t o conduct t h i s r e s e a r c h . L i z Dohan a s s i s t e d me w i t h the r e c r u i t m e n t by handing out l e t t e r s at the support group (see Appendix III).  45 and from which they may need care i n the f u t u r e . the p a r t i c i p a n t s ,  In some cases  such as T r i s h a , f r e e l y c r i t i c i z e d the treatment  they had r e c e i v e d , but the m a j o r i t y  had nothing but p r a i s e  for  the B r i t i s h Columbia Cancer Agency. These t h r e e i n - d e p t h case s t u d i e s l a s t e d from f o u r t o seven hours each, and each i n c l u d e d at l e a s t two repeat The i n t e r v i e w s were done about a month a p a r t .  interviews.  I d i d the  i n t e r v i e w s w i t h Anne and T r i s h a at t h e i r homes, and the i n t e r v i e w s w i t h Rebecca i n my home. audio-taped.  I  l i s t e n e d t o the tapes of each i n t e r v i e w p r i o r  the f o l l o w i n g i n t e r v i e w further. their  e x c e r p t s from t h e i r  to  and i d e n t i f i e d areas I wanted t o d i s c u s s  The p a r t i c i p a n t s a l l  interviews.  I  A l l of the i n t e r v i e w s were  r e c e i v e d c o p i e s of the tapes of  They a l s o p r o o f r e a d the t r a n s c r i p t s of interviews  the  included in t h i s t h e s i s .  i n c l u d e d the i n - d e p t h case s t u d i e s t o p r o v i d e a depth of  i n f o r m a t i o n not a v a i l a b l e i n the s h o r t e r i n t e r v i e w s . were done a f t e r the s h o r t e r i n t e r v i e w s , explore further interviews.  As they  I was a l s o a b l e t o  some of the concepts d e v e l o p i n g from the  shorter  Only two of the case s t u d i e s , Anne and Rebecca, have  been i n c l u d e d i n f u l l ,  as Anne and T r i s h a ' s s t o r i e s were s i m i l a r .  Another advantage of the i n - d e p t h case s t u d i e s was t h a t by doing m u l t i p l e  interviews with three i n d i v i d u a l s , I obtained a  p e r s p e c t i v e on how t h e i r  s t o r i e s changed over t i m e .  of an e v o l v i n g account i s v e r y important  The concept  i n the understanding of  b r e a s t cancer n a r r a t i v e s and i s probably b e s t e x e m p l i f i e d by Anne.  46 The a n a l y s i s of a l l the i n t e r v i e w s was done through a process of r e a d i n g and immersion i n the i n t e r v i e w s , the s e c t i o n s where p a r t i c i p a n t s t a l k e d about t h e i r w i t h b r e a s t cancer or cancer i n g e n e r a l .  drawing out experiences  Then I examined these  s e c t i o n s of the i n d i v i d u a l accounts f o r common themes and structures.  From these themes and s t r u c t u r e s I c o n s t r u c t e d the  b r e a s t cancer n a r r a t i v e s presented i n t h i s t h e s i s . I  analyzed the i n t e r v i e w s by drawing out n a r r a t i v e s  than c a t e g o r i z i n g a n d / o r q u a n t i f y i n g themes. several strengths.  It  rather  T h i s a n a l y s i s has  a v o i d s the f i x i n g of meaning i n the  development of normative c a t e g o r i e s ( A l m e i d a - F i l h o 1991, 1988,  R u b i n s t e i n and P e r l o f f  1986).  It  m u l t i p l e schemata w i t h i n the n a r r a t i v e s .  Kaufert  allows i d e n t i f i c a t i o n It  of  shows how the b r e a s t  cancer n a r r a t i v e s change w i t h the passage of t i m e .  Examining the  i n d i v i d u a l accounts as they developed i n the i n t e r v i e w  also  h i g h l i g h t e d the i n c o n s i s t e n c i e s and c o n t r a d i c t i o n s t h a t are i n t e g r a l p a r t s of i l l n e s s n a r r a t i v e s . During the i n t e r v i e w s ,  p a r t i c i p a n t s mentioned sources of  i n f o r m a t i o n on b r e a s t cancer other than t h e i r p h y s i c i a n s . t r i e d t o l o c a t e as many as I c o u l d . 1986, videos  1990;  Simmonton et a l 1978;  ( J i l l i a n 1986,  They i n c l u d e d books  Love 1990;  (Seigel  Sontag 1978)  Landsbury Company 1988).  Many of  I  and the  p a r t i c i p a n t s i n d i c a t e d they read a r t i c l e s from newspapers and magazines, as w e l l as p o p u l a r l i t e r a t u r e on b r e a s t c a n c e r , but d i d not s p e c i f y the exact m a t e r i a l .  Therefore,  I c o l l e c t e d and  examined some of the popular l i t e r a t u r e on b r e a s t c a n c e r .  I  c o l l e c t e d pamphlets and newspaper and magazine a r t i c l e s from a  47 v a r i e t y of s o u r c e s , such as B r i t i s h Columbia Cancer Agency, information  fairs,  l o c a l supermarkets and newspapers.  read a number of i n d i v i d u a l accounts of b r e a s t  I  also  cancer.  A s i g n i f i c a n t amount of p o p u l a r l i t e r a t u r e i s a v a i l a b l e b r e a s t cancer s p e c i f i c a l l y and on cancer g e n e r a l l y . from ideas about h e a l i n g and treatment Simmonton et a l 1978) b r e a s t cancer ( f o r I  (for  It  on  ranges  example S e i g e l 198 6,  t o s t o r i e s of p e r s o n a l experiences w i t h  example Wadler 1992,  R o l l i n 1976).  a l s o t r i e d t o keep abreast of the i s s u e s t h a t arose d u r i n g  the p e r i o d of the r e s e a r c h .  These i n c l u d e d the  discussions  around a g e n e t i c b a s i s of b r e a s t cancer (Canadian Breast Cancer Research I n i t i a t i v e 1994) r e s u l t s of the N a t i o n a l Caines et a l 1993; I  and the c o n t r o v e r s y surrounding the  Breast Screening Study  Miller  1993a,  also did participant  (Bryant  1993;  1993b).  o b s e r v a t i o n at a number of p u b l i c  f u n d - r a i s i n g events f o r b r e a s t cancer i n the Lower Mainland. During t h i s p e r i o d many of these events were put on by the newly formed Canadian Breast Cancer Foundation - B r i t i s h Columbia 2 6  Chapter  .  Events i n c l u d e d i n f o r m a t i o n a l  meetings,  fund-raising  b r e a k f a s t s and f u n d - r a i s i n g r u n s . While t h i s r e s e a r c h was i n p r o g r e s s , a number of (Ralph 1994, 1994,  McPhee 1994,  Williams  1993)  Crowie 1994)  local  and other Canadian  (Batt  s t o r i e s of women's experiences w i t h b r e a s t  cancer were p u b l i s h e d .  As w e l l ,  an i n f o r m a t i o n a l  text  p a t i e n t s was p u b l i s h e d by l o c a l p h y s i c i a n s ( O l i v o t t o ,  for Gelmon and  In 1994 I became a member of the S c i e n t i f i c A d v i s o r y Committee of the Canadian Breast Cancer Foundation - B r i t i s h Columbia Chapter.  48 Kuusk 1995) . A number of l i m i t a t i o n s  are i n h e r e n t  t h i s s t u d y , due t o a v a i l a b i l i t y  i n the methods used i n  of data and r e s o u r c e s .  were no funds f o r t r a n s l a t i o n or t r a v e l ,  As t h e r e  I spoke only t o women  who were comfortable and c o n f i d e n t i n E n g l i s h and who l i v e d the Lower M a i n l a n d .  The s t o r i e s of those women who do not speak  E n g l i s h and l i v e o u t s i d e the Lower Mainland, e s p e c i a l l y the interior  in  and northern B r i t i s h Columbia, would be w e l l worth  considering for future  research.  49  Chapter IV - Background Information  T h i s chapter reviews some background i n f o r m a t i o n , the reader i n p l a c i n g the i n t e r v i e w s  in context.  to a s s i s t  This includes a  review of some of the s t a t i s t i c s on b r e a s t c a n c e r , an  explanation  of the s t a g i n g of b r e a s t cancer tumours, and i n f o r m a t i o n on the h e a l t h care s e r v i c e s a v a i l a b l e  t o women i n the Lower Mainland of  B r i t i s h Columbia who have had a d i a g n o s i s of b r e a s t  cancer.  A. Breast Cancer S t a t i s t i c s These are the most b a s i c s t a t i s t i c s ,  just to provide  reader w i t h an idea of the p r e v a l e n c e of b r e a s t cancer i n Columbia.  In  1995 the N a t i o n a l  estimated t h a t i n t h a t y e a r ,  the British  Cancer I n s t i t u t e of Canada (1995)  17,700 new cases of b r e a s t cancer  would be diagnosed i n Canada, and t h a t 5,400 women would d i e the d i s e a s e .  from  For B r i t i s h Columbia the estimates were 2,600 new  cases and 630 deaths  ( N a t i o n a l I n s t i t u t e of Canada 1995).  The r e l a t i v e b r e a s t cancer s u r v i v a l r a t e a f t e r f i v e y e a r s 73%.  T h i s i s much h i g h e r than lung cancer at 20%, but lower  uterine  is  than  cancer at 81% ( N a t i o n a l Cancer I n s t i t u t e of Canada 1995).  Table I  shows the estimates of new cases and deaths f o r  i n Canada by age.  A l a r g e number of women are diagnosed w i t h  b r e a s t cancer each y e a r , b r e a s t cancer each y e a r .  and a l a r g e number of women d i e  from  Breast cancer i s most common among  women who are over the age of  50.  1995  50  Table I  - Estimated New Cases and Deaths f o r B r e a s t Cancer by Age i n Canada i n  Age Group 0-19  1995  New Cases  Deaths  l e s s than 5  l e s s than 5  20 -  29  90  15  30 -  39  940  210  40 -  49  3100  580  50 -  59  3200  850  60 -  69  4200  1200  70 -  79  4100  1350  2100  1150  80 + Source:  N a t i o n a l Cancer I n s t i t u t e of Canada 1995:40  Although b r e a s t cancer i s the cause of death f o r many women, the f i v e year s u r v i v a l r a t e i s s i g n i f i c a n t .  T h e r e f o r e , when  r e s e a r c h i n g women's experience w i t h b r e a s t c a n c e r , i t important t o r e c o g n i z e the p o t e n t i a l  is  f o r v a r i a t i o n i n experience  due t o age and l e n g t h of time s i n c e d i a g n o s i s . I was c a r e f u l i n s e l e c t i n g the s t a t i s t i c s I would p r e s e n t t h i s t h e s i s , because i n doing the f i e l d w o r k I  in  found t h a t  s t a t i s t i c s are p a r t of the c u l t u r a l c o n s t r u c t i o n of b r e a s t cancer.  For example, s t a t i s t i c s are used t o s t a t e how s e r i o u s an  i l l n e s s b r e a s t cancer i s . donations t o f u r t h e r  T h i s i s u s u a l l y f o l l o w e d by a p l e a  r e s e a r c h or some other good c a u s e .  an example of q u a n t i f i c a t i o n r h e t o r i c , where  quantifying  for  This i s  51 comparisons heighten the c o n t r a s t o f , t o other problems ( P o t t e r et a l  i n t h i s case b r e a s t c a n c e r ,  1991).  One s t a t i s t i c commonly used i s t h a t one i n nine women w i l l get b r e a s t cancer i n t h e i r  lifetime,  which i s  frightening.  However, t h i s s t a t i s t i c does not account f o r the changing r i s k over a l i f e t i m e .  Older women are at h i g h e r r i s k of  getting  b r e a s t cancer than younger women, so the r i s k f o r a young woman i s much lower than one i n n i n e . A second example of a s t a t i s t i c t h a t i s p a r t of the  cultural  c o n s t r u c t i o n of b r e a s t cancer i s the c l a i m t h a t b r e a s t cancer i s the number one k i l l e r again f r i g h t e n i n g .  of women between the ages of 35 and 50,  However, t h e r e are few causes of death  women i n t h i s age range.  It  is s t i l l  for  the o l d e r women, those over  50, who bear the brunt of the d i s e a s e (see Table I ) .  Portraying  the d i s e a s e as b e i n g of concern t o women i n the prime of  life,  r a t h e r than o l d e r women, i s a good s t r a t e g y f o r r a i s i n g awareness and f u n d s . Individual  women i n c o r p o r a t e d s t a t i s t i c s i n t o t h e i r  stories,  27 or i n one case had s t a t i s t i c s quoted t o them  , to explain  s i t u a t i o n s or t o r a i s e q u e s t i o n s about the f u t u r e . s t a t i s t i c s are the s i z e of the tumour i t s e l f ,  their  Commonly used  and t h a t a f t e r  five  years without r e c u r r e n c e the b r e a s t cancer i s c o n s i d e r e d t o have gone.  The numerical r e p r e s e n t a t i o n of b r e a s t cancer i n the  n a r r a t i v e s i s extremely  interesting.  It  l e a d s me t o wonder j u s t  A n g e l a , who was 2 6 when d i a g n o s e d , was t o l d many times how unusual i t was f o r someone her age t o have b r e a s t c a n c e r , comments she found f r u s t r a t i n g . T h i s case w i l l be d i s c u s s e d i n further d e t a i l l a t e r .  52 how our s t a t i s t i c a l  r e p r e s e n t a t i o n of d i s e a s e c o n t r i b u t e s t o  its  cultural construction.  28  B. S t a g i n g o f B r e a s t Cancer Tumours During the i n t e r v i e w s many of the p a r t i c i p a n t s what "stage" t h e i r  tumour was.  indicated  S t a g i n g of tumours i s done by  p a t h o l o g i s t s and o n c o l o g i s t s t o estimate the p r o g r e s s of disease,  i t s s e r i o u s n e s s and the chances of s u r v i v a l .  estimates are a l l (Olivotto,  The  approximations and each case w i l l be d i f f e r e n t  Gelmon and Kuusk 1995).  used the s t a g i n g of t h e i r  However,  disease in t h e i r  i n d i c a t i o n of i t s s e r i o u s n e s s . from O l i v o t t o ,  the  the  participants  s t o r i e s as an  The i n f o r m a t i o n presented here  Gelmon and Kuusk (1995), and O l i v o t t o  is  (personal  communication) Stage  I Tumour i s l e s s than two c e n t i m e t e r s ,  cancer i n the lymph nodes.  Treatment  no metastases and no  is usually l o c a l ,  mastectomy or lumpectomy and r a d i a t i o n .  Average  including  five-year  s u r v i v a l i s 80% t o 90%.  There i s a second s t a g i n g system c a l l e d the TNM. T h i s system u s e s : 1) Tumour s i z e and spread (T), 2) lymph node involvement (N), and 3) the presence or absence of metastases (M) ( O l i v o t t o et a l , 1995). None of the p a r t i c i p a n t s mentioned t h i s s t a g i n g system i n the i n t e r v i e w s so I w i l l not review i t i n detail.  53 Stage  II Tumour i s t w o - f i v e c e n t i m e t e r s ,  chest w a l l .  but not i n v o l v i n g s k i n or  Some lymph nodes may be i n v o l v e d , but they  moveable. No metastases.  Treatment  i s again u s u a l l y  i n c l u d i n g mastectomy or lumpectomy and r a d i a t i o n ,  are  local,  but a l s o  i n c l u d e s adjuvant therapy such as chemotherapy and hormonal therapy.  Stage  Average f i v e year s u r v i v a l i s 50% t o 70%.  III Tumour i s l o c a l but advanced, and e i t h e r  s k i n or c h e s t w a l l ,  No metastases past the c l a v i c l e  the to  .  i n c l u d e s h i g h - d o s e chemotherapy, r a d i a t i o n therapy and  hormonal therapy p r i o r t o s u r g e r y , Average f i v e - y e a r  Stage  i s fixed to  or the lymph nodes i n v o l v e d are "attached"  s t r u c t u r e s i n the a x i l l a . Treatment  it  if  s u r v i v a l i s 30% t o  surgery i s an o p t i o n . 60%.  IV Cancer has spread beyond the b r e a s t and a x i l l a t o lymph  nodes above the c l a v i c l e or t o d i s t a n t organs. palliative  care t o improve q u a l i t y of l i f e .  s u r v i v a l 5% t o  Treatment  Average  five-year  20%.  The s t a g i n g system p r o v i d e s a simple c o n s t r u c t i o n of cancer.  First,  is  the l a r g e r the tumour and the f u r t h e r  the worse the d i s e a s e . a g g r e s s i v e the treatment  Second, the g r e a t e r ( u n t i l stage IV)  C l a v i c l e i s the c o l l a r b o n e .  breast  the s p r e a d ,  the s p r e a d , the more  and the lower  the  54 chances of s u r v i v a l . In t h e i r  s t o r i e s , the p a r t i c i p a n t s l i n k e d the s i z e and  spread of the tumours and t h e i r type of treatment t o s u r v i v a l . They i n c o r p o r a t e d t h i s i n t o t h e i r c o n s t r u c t i o n of cancer as a way of e v a l u a t i n g the s e r i o u s n e s s of t h e i r p a r t i c u l a r c a n c e r .  C. Health Services Available t o Women Who Have Had a Diagnosis of Breast Cancer Two main f a c t o r s which c o n t r i b u t e t o the p a r t i c i p a n t s ' experiences and which may be d i f f e r e n t i n other j u r i s d i c t i o n s .  The f i r s t  i n B r i t i s h Columbia than  i s the a v a i l a b i l i t y  p r o v i n c i a l h e a l t h insurance system.  The second i s  c e n t r a l i z e d d e l i v e r y of treatment f o r c a n c e r .  of a  the  These two f a c t o r s  c o n t r i b u t e t o the development of an i n s t i t u t i o n a l  culture  to  which a l l the p a r t i c i p a n t s were exposed d u r i n g t h e i r d i a g n o s i s and treatment.  As a r e s u l t ,  the s u b - n a r r a t i v e s d e a l i n g w i t h the  p e r i o d of d i a g n o s i s and treatment have l i t t l e v a r i a t i o n . w i l l be d e s c r i b e d i n Chapter  This  VI.  N a t i o n a l h e a l t h insurance i s a v a i l a b l e throughout a l l  of  Canada, but the i n s u r a n c e p l a n s are a d m i n i s t e r e d and s u b s i d i z e d 30 by the p r o v i n c i a l governments  .  In B r i t i s h Columbia the  insurance p l a n i s c a l l e d the Medical S e r v i c e s Plan (MSP). available to a l l  MSP i s  r e s i d e n t s of the p r o v i n c e f o r $36 per month once  r e s i d e n c y i n the p r o v i n c e has been e s t a b l i s h e d . pay p a r t of or a l l  Many employers  of t h i s fee as p a r t of an employment c o n t r a c t .  The core s e r v i c e s covered by the p r o v i n c i a l i n s u r a n c e p l a n s are mandated by the f e d e r a l government under the Canada H e a l t h A c t , with some minor v a r i a t i o n s .  55 Otherwise,  each i n d i v i d u a l  paying f o r MSP.  i s responsible for registering  Those people on s o c i a l a s s i s t a n c e are  covered as p a r t of t h a t a s s i s t a n c e .  While t h e r e i s  i n and  often  the  p o s s i b i l i t y of someone not being covered by MSP, t h i s can u s u a l l y be d e a l t w i t h by having the i n d i v i d u a l pay the fees a f t e r  the  fact. MSP covers the c o s t of a l l p h y s i c i a n v i s i t s , laboratory  s e r v i c e s , and h o s p i t a l c o s t s .  physiotherapy, fee".  treatment and  Some s e r v i c e s , such as  have l i m i t e d coverage and r e q u i r e a small "user  Therefore,  f o r a woman i n the p r o v i n c e who i s covered by  MSP, the f i n a n c i a l burden of being diagnosed with b r e a s t cancer i s r e l a t e d more t o l o s t wages r a t h e r  than t o medical expenses.  The impact of medical c o s t s on the experience i s very  different  from t h a t i n the U n i t e d S t a t e s , where the concern about treatment c o s t i s a major p a r t of the  experience.  The B r i t i s h Columbia Cancer Agency i s a treatment, and t e a c h i n g f a c i l i t y .  It  i s a h e a l t h care f a c i l i t y  of any other h o s p i t a l i n the p r o v i n c e . .  mainland B r i t i s h Columbia  31  independent  A l l women who l i v e .  .  and who r e q u i r e r a d i a t i o n  radiation  are s t i l l  Many such women who do not  r e f e r r e d t o the Vancouver C l i n i c  in  treatment  are g i v e n t h a t treatment at the Vancouver C l i n i c of the Columbia Cancer Agency.  research  British  require for  assessment and c o n s u l t a t i o n .  The mainland of the p r o v i n c e i s a l l of B r i t i s h Columbia except f o r Vancouver I s l a n d . T h e r e f o r e some people have t o t r a v e l a long way f o r treatment. C u r r e n t l y the B r i t i s h Columbia Cancer Agency i s i n the p r o c e s s of opening up treatment f a c i l i t i e s i n the i n t e r i o r of the p r o v i n c e t o d e a l w i t h t h i s problem.  56 Other p a t i e n t  s e r v i c e s are a l s o a v a i l a b l e at the B r i t i s h  Columbia Cancer Agency, i n c l u d i n g access t o i t s l i b r a r y and p a t i e n t c o u n s e l l i n g and support s e r v i c e s .  There are two formal  support groups f o r women who have had a d i a g n o s i s of b r e a s t c a n c e r , one f o r those going through treatment, and one f o r those who have completed treatment.  Some of the p a r t i c i p a n t s used  these support s e r v i c e s . The e x i s t e n c e of a c e n t r a l i z e d treatment f a c i l i t y and the f a c t t h a t sampling f o r t h i s study was done through t h i s  facility  c r e a t e s a s i m i l a r i t y of experience t h a t would not be as common elsewhere. I  have p r o v i d e d o n l y minimal i n f o r m a t i o n about the  health  s e r v i c e s a v a i l a b l e t o women who have had a d i a g n o s i s of b r e a s t cancer.  However, i n the long n a r r a t i v e s i n Chapter V, the impact  of p r o v i n c i a l h e a l t h insurance and a c e n t r a l i z e d treatment f a c i l i t y on the experience becomes e v i d e n t .  57  Chapter V - Narratives of L i v i n g With Having Had a Diagnosis of Breast Cancer  I l l n e s s n a r r a t i v e s are r e p r e s e n t e d i n the accounts of i n d i v i d u a l experiences w i t h i l l n e s s . experiences of the p a r t i c i p a n t studies  32  .  To ground the reader i n the  I am p r e s e n t i n g two i n - d e p t h case  • . . . Each i s an i n d i v i d u a l ' s account, and i s unique i n  many r e s p e c t s .  However both have a common s t r u c t u r e .  Both a l s o  have a s p e c t s t h a t are shared w i t h other p a r t i c i p a n t ' s s t o r i e s . L i k e the m a j o r i t y  of the p a r t i c i p a n t s , the t e l l e r s  these accounts s t a r t t h e i r  of both  s t o r i e s by t e l l i n g how t h e i r cancer  was d e t e c t e d , diagnosed and t r e a t e d . The  remainder of the s t o r y i s an account of the impact the  cancer has had on t h e i r  l i v e s and the l i v e s of o t h e r s .  This  s e c t i o n of the s t o r y i s t h e i r way of making the cancer meaningful through the r e w r i t i n g and  of t h e i r p e r s o n a l biography t o account f o r  accommodate the c a n c e r . Each p a r t i c i p a n t does t h i s d i f f e r e n t l y .  Both t a l k about the  f u t u r e and t r y t o draw t h e i r cancer s t o r y t o a c o n c l u s i o n . the u n c e r t a i n t y of the f u t u r e , t h a t makes t h i s v e r y  It  is  the p o s s i b i l i t y of r e c u r r e n c e ,  difficult.  Through the c o n s t r u c t i o n of t h e i r p e r s o n a l accounts the p a r t i c i p a n t s invoke a v a r i e t y narratives  of b r e a s t cancer n a r r a t i v e s .  i n f l u e n c e the p r e s e n t a t i o n of s t r u c t u r e of the  These story.  The case s t u d i e s have been e d i t e d t o cover m a t e r i a l of interest for this thesis. They c o n t a i n both p a r a p h r a s i n g and d i r e c t quotes. The quotes have been e d i t e d t o make them readable. For t h i s t h e s i s I am more i n t e r e s t e d i n the content of the m a t e r i a l than i n a l i n g u i s t i c a n a l y s i s .  58 As w e l l they p r o v i d e a b a s i s f o r the s e l e c t i o n of content  to  present i n the account.  A. Anne At the b e g i n n i n g of the s t o r y of her d i a g n o s i s and treatment Anne d e s c r i b e s how the d i a g n o s i s d i s r u p t e d her l i f e .  She goes on  t o d e s c r i b e how she r e c o n s t r u c t e d her sense of i d e n t i t y  and body  through s e p a r a t i n g the cancer from h e r s e l f and d e s c r i b i n g her treatments  as s u c c e s s f u l .  She a l s o d e s c r i b e s i n g r e a t d e t a i l  the  change i n her c o n s t r u c t i o n of b i o g r a p h i c a l time as she went through treatment and the p o s t - t r e a t m e n t  period.  As Anne t a l k s about the cancer i n her l i f e she develops an account of what may have caused her c a n c e r , a p e r s o n a l r i s k profile.  She a l s o t a l k s at l e n g t h about the impact the cancer  has had on her l i f e ,  and how i t  has p r o v i d e d her w i t h an  o p p o r t u n i t y t o r e e v a l u a t e her l i f e and make changes. Anne's cancer s t o r y i s ,  i n a sense, incomplete.  about the f u t u r e and the r o l e , cancer w i l l p l a y .  However,  She t a l k s  she hopes a minimal r o l e ,  throughout the n a r r a t i v e  the  l e a d i n g up  t o t h i s p o i n t she d e s c r i b e s many c h a l l e n g e s t o her d e v e l o p i n g understanding of b r e a s t c a n c e r , such as having t o d e a l w i t h the f e a r of r e c u r r e n c e at the end of her treatment and her r e a c t i o n s t o her cancer d i a g n o s i s .  She a r t i c u l a t e l y  family's  describes  the ambiguity of b r e a s t c a n c e r . Anne i s a 35 year o l d p r o f e s s i o n a l . p r o f e s s i o n a l and i s a r t i c u l a t e  She i s a h e a l t h  i n the use of medical  terminology.  She had been diagnosed w i t h b r e a s t cancer about e i g h t months  59 b e f o r e the f i r s t in A p r i l ,  interview.  May, June and August 1994.  done at her k i t c h e n t a b l e , The f i r s t  She p a r t i c i p a t e d i n f o u r  interviews  A l l the i n t e r v i e w s were  although i n two d i f f e r e n t  apartments.  and second i n t e r v i e w s were done i n an apartment  that  she was s h a r i n g w i t h a f r i e n d , the l a s t two i n her own. Anne i s v e r y t h o u g h t f u l .  She speaks s l o w l y and p r e c i s e l y ,  and chooses her words c a r e f u l l y .  A f t e r l i s t e n i n g t o c o p i e s of  the a u d i o - t a p e s of the i n t e r v i e w s  she was p l e a s a n t l y s u r p r i s e d at  how a r t i c u l a t e  she was.  However, she a l s o found the  t o be v e r y i n t e n s e and t i r i n g .  She compared them t o  interviews the  i n t e n s i t y of d i s c u s s i o n s i n support groups f o r women w i t h b r e a s t cancer.  She s a i d t h a t i n both s i t u a t i o n s you chose your words  very c a r e f u l l y . The f i r s t interview  i n t e r v i e w took p l a c e at the end of A p r i l .  The  s t a r t e d w i t h my a s k i n g Anne when she was diagnosed and  what happened. She r e c a l l e d i t year.  had been i n the l a t e summer of the p r e v i o u s  She had been down at the beach i n the e v e n i n g .  Later that  n i g h t she woke up uncomfortable, w i t h a s t i n g i n g i n her back. She was a l i t t l e concerned, t h i n k i n g t h a t she might have a bad r e a c t i o n t o an i n s e c t b i t e . Breast S e l f Examination  33  The next morning as she was doing  she d i s c o v e r e d a lump i n her b r e a s t .  "I found i t m y s e l f . And I knew at t h a t time t h a t , i t was d i f f e r e n t , t h a t i t was probably c a n c e r . J u s t from f e e l i n g the lump, and I h a d n ' t f e l t i t b e f o r e , and I ' v e always had lumps and bumps i n my b r e a s t s . But t h i s was d i f f e r e n t . It f e l t d i f f e r e n t . And I s t i l l 33  Breast S e l f Examination (BSE) i s a manual s e l f examination of b r e a s t t i s s u e used t o d e t e c t changes i n b r e a s t tissue. The Canadian Cancer S o c i e t y recommends women do BSE once a month (Canadian Cancer S o c i e t y 1991).  60 wonder how I c o u l d have missed i t because i t was 1.7 c e n t i m e t e r s . . . A l i t t l e v o i c e i n s i d e of me s a i d , 'Get t h i s checked o u t , t h i s i s not r i g h t ' . " Anne phoned her f a m i l y d o c t o r immediately and made an appointment f o r the f o l l o w i n g week.  At t h a t appointment she  d i s c u s s e d the s i t u a t i o n w i t h her d o c t o r and decided t h a t she wanted t o be r e f e r r e d d i r e c t l y t o a surgeon r a t h e r than having any t e s t s done f i r s t .  She a p p r e c i a t e d her f a m i l y d o c t o r g i v i n g  her t h a t o p t i o n . In two or t h r e e weeks she had seen the surgeon and had a mammogram , a needle b i o p s y 34  3 5  and an u l t r a s o u n d . 3 6  After  all  the t e s t s had been done she came home from work t o f i n d a message on her answering machine a s k i n g her t o c a l l the d o c t o r ' s o f f i c e . "I j u s t knew. I t was j u s t a f e e l i n g I had. It turned out t h a t t h e r e was [malignant] c e l l s i n the needle b i o p s y they had t a k e n . So t h a t ' s when t h i n g s r e a l l y s t a r t e d t o happen, . . . Maybe a p a r t of t h a t was f e a r . A n t i c i p a t i o n of the w o r s t . But something i n s i d e of me I t h i n k was p r e p a r i n g myself f o r some bad news, you know. I t ' s almost l i k e t h a t same l i t t l e v o i c e , when I had the c h o i c e between a mastectomy or A mammogram i s an x - r a y of the b r e a s t t i s s u e . I t i s used f o r both the d i a g n o s i s of b r e a s t lumps and s c r e e n i n g f o r b r e a s t cancer (Canadian Cancer S o c i e t y 1991). 35  In a needle b i o p s y a surgeon i n s e r t s a needle i n t o a lump t o get a sample of the t i s s u e . There are two types of needle biopsy: f i n e needle t h a t only takes a few c e l l s , and a l a r g e r needle t h a t takes a small p i e c e of the lump (Love 1990). An u l t r a s o u n d i s a t e s t where h i g h - f r e q u e n c y sound waves are sent i n p u l s e s through the b r e a s t t i s s u e . I t i s used t o determine i f the lump i n the b r e a s t i s f l u i d - f i l l e d , such as a c y s t , or s o l i d , such as a fibroadenoma or a cancerous lump (Love 1990) . 37  A mastectomy i s the s u r g i c a l removal of the a l l the b r e a s t t i s s u e . A m o d i f i e d r a d i c a l mastectomy i n c l u d e s the removal of some of the lymph nodes from under the arm on the same s i d e as the a f f e c t e d b r e a s t as w e l l . A r a d i c a l mastectomy i s where the b r e a s t t i s s u e , the lymph nodes and the muscles of the chest w a l l are s u r g i c a l l y removed. A p r o p h y l a c t i c mastectomy i s a  61 a lumpectomy t h a t l i t t l e v o i c e s a i d , 'Go w i t h mastectomy.' That was not a hard d e c i s i o n on my p a r t either. There was something w i t h i n me t e l l i n g me these things." Anne took her best f r i e n d w i t h her t o her second appointment w i t h the surgeon f o r moral support and a l s o t o take n o t e s , because Anne knew she would not remember a l o t of what the surgeon was going t o t e l l  her.  A f t e r the second appointment Anne went through t e s t i n g t o see i f  t h e r e had been any "mets"  further  39 .  "And t h a t was a d i f f i c u l t p e r i o d . Waiting f o r the r e s u l t s of t h a t . Because depending on t h o s e , the r e s u l t s of the t e s t s , i t would a f f e c t the s u r g e r y . But they a l l turned out n e g a t i v e , thank God f o r t h a t . They booked me f o r surgery towards the end of September. . . I t was f o r t u n a t e t h a t I was bumped i n a week e a r l i e r too. A l l e v i a t e d a l o t of the mental anguish I was going through t o o . . . The w a i t i n g p e r i o d i s j u s t terrible. You have so many q u e s t i o n s and no answers. Or so few answers. . . I must say the d o c t o r s were wonderful. The whole t h i n g was hastened a l o n g . In comparison t o some of the s t o r i e s I have heard where women have had t o wait f o r l o n g e r p e r i o d s of time e i t h e r t o get i n t o see a d o c t o r or t o have the s u r g e r y . I c a n ' t imagine even what t h a t would have been l i k e t o wait l o n g e r than what I had t o w a i t . And my p r o c e s s was very f a s t . A month and a h a l f . " I  asked Anne t o t a l k about making the d e c i s i o n t o have a  mastectomy r a t h e r  than a lumpectomy.  mastectomy done on asymptomatic women t o prevent b r e a s t cancer (Love 1990). In these i n t e r v i e w s a "mastectomy" u s u a l l y r e f e r s t o a m o d i f i e d r a d i c a l mastectomy. 38  A lumpectomy i s the s u r g i c a l removal of the lump w i t h a small rim of normal t i s s u e around i t (Love 1990). 39 "Mets" i s s h o r t f o r " m e t a s t a s i s " the spread of cancer t o another organ i n the body. The spread i s u s u a l l y through the b l o o d stream. Breast cancer most commonly spreads t o the l u n g s , l i v e r and bones (Love 1990).  62 "To me perhaps i t was p r o p e l l e d by f e a r somewhat, you know, what about the remaining t i s s u e ? What i f they d o n ' t get i t a l l ? . . . I guess t h e r e was a l i t t l e b i t of anger i n t h e r e and I thought, you know, t h i s b r e a s t has betrayed me, i t has threatened my l i f e . I'll get r i d of i t . Because I d o n ' t want t o have t o worry about r e o c c u r r e n c e i n the a f f e c t e d b r e a s t as w e l l as my h e a l t h y b r e a s t . Now I only have t o worry about one b r e a s t . . . I've never been a b r e a s t p e r s o n . It never meant t h a t , i t ' s never p l a y e d t h a t g r e a t importance i n my l i f e . . . I thought, t h i s would be a means of maybe s u s t a i n i n g my l i f e , of h e l p i n g me get over t h i s d i s e a s e would be t o j u s t take the b r e a s t . And t h a t l i t t l e v o i c e t h a t I was t e l l i n g you about s a i d , 'Go with the mastectomy, t h a t ' s the t h i n g t o d o . ' Yeah, so I.had the mastectomy and the a