Download Saying No: A biographical analysis of why women with a genetic

Saying No: A biographical analysis
of why women with a genetic
predisposition to developing
breast/ovarian cancer reject risk
reducing surgery.
Dr Doreen Molloy, University of Glasgow
Dr Joyce Hendricks, Edith Cowan University, Perth, WA
Professor Anne Williams, Murdoch University, Perth, WA
Content
• Background to the study
• Brief overview of Hereditary Breast/Ovarian
Cancer (HBOC) syndrome and risk reducing
surgery (RRS)
• Aims of the study
• Methodological approach
• Why they said no to RRS
• Conclusions and recommendations
Background to the study
• Personal drivers;
• Professional drivers;
– Working with women with
breast and ovarian cancer.
– Working with the “worried
well” who had no diagnosis
of disease.
– Facing the possibility of
having a familial disorder.
– Increasing awareness of
genetic risk as an issue in
health care/society.
– Identification of “cancer
genes” and genetic testing.
– Clinical guidelines for the
management of HBOC.
– Increasing number of
women undergoing RRS for
HBOC.
– RRS moves from an
“unthinkable step” (Thompson,
1994) to the principle primary
intervention for cancer risk
(Ingham et al., 2013).
HBOC syndrome and RRS
• RRM;
– Total/subcutaneous/total skin
sparing
sporadic versus inherited mutation
BRCA1 and BRCA2 mutations
confer ~ lifetime risks of;
• 40%-80% for breast cancer
• 11%-40% for ovarian cancer
• RRSO;
– Both ovaries/fallopian tubes
– Usually laparoscopic
– Induction of menopause
• RRS reduces breast cancer risk
by up to 90% and ovarian cancer
(Petrucelli et al., 2013)
risk by up to 80% in high risk
populations. (Ingham et al., 2013)
BRCA1/2 mutations account for;
• There is an association between
• ~ 5-10% of all breast/ovarian
RRS and improved survival in
cancer
high risk women, but further
• ~ 25% of HBOC
evidence is needed. (Domchek et al.,
(NCI, 2014)
2010)
HBOC in the spotlight
Reproduced with permission from copyright owners
Angelina’s “heroic” medical choice
I wanted to write this to tell other women that the
decision to have a mastectomy was not easy. But it is one
I am very happy that I made. My chances of developing
breast cancer have dropped from 87% to under 5%. I
can tell my children that they don’t need to fear they will
lose me to breast cancer. (…) and they know that I love
them and will do anything to be with them as long as I
can. (…) I do not feel any less of a woman. I feel
empowered that I made a strong choice that in no way
diminishes my femininity. I want to encourage every
woman, especially if you have a family history of breast
or ovarian cancer, to seek out the information and
medical experts who can help you through this aspect of
your life, and to make your own informed choices.
The message from Angelina’s story
• RRS with reconstruction is an
effective ‘cure’ for cancer risk and
is therefore a ‘no-brainer’.
• We have a “genetic
responsibility” (Acero, 2012) to our
children.
• “A woman at genetic risk should
feel empowered to remove both
breasts as a way to prevent the
disease” (Grady et al., 2013).
BUT: some women have a different experience:
those women’s experiences were the focus of
this study.
The aims of the study
• To explore the experiences of high risk women
who say no to RRS.
• To create new knowledge regarding the
refusal of RRS in high risk women within the
framework of dominant Western discourses.
• To make recommendations for the care,
counselling and support of high risk women
who refuse RRS.
Methodological assumptions
• Life/health experiences do not take place in a
vacuum: societal, cultural and historical contexts
shape experience.
• HBOC is particularly challenging because it
involves the removal of breasts and ovaries which
are symbolic of femininity in Western culture.
• High risk women make decisions about RRS
within a framework of competing discourses.
• In other words: the decision to say no to RRS
must be interpreted within broader social,
political and cultural frameworks in which life and
experience take place.
Methodological
Framework
Qualitative
approach
Denzin’s (1989)
Interpretive Biography
Dolby-Stahl’s (1985)
Literary Folkloristic
Methodology
Literary Folkloristic
Method
Foucauldian literary
theory
Marxist literary
theory
Communal folklore/
cultural understandings
Feminist literary
theory
Private folklore/ personal
meaning
Key concepts of each literary theory
Foucauldian
lens
Concept of discourse
Disciplinary power
Power/knowledge and ‘the truth’
Marxist
lens
Medicine and ideology
Ideology of genetic responsibility
Commodification, genetics and the female body
Feminist
lens
Femininity and the female role in Western society
Social constructions of breast/ovarian cancer
Patriarchy, power and resistance
Study design
• Eight-step literary
folkloristic method.
• Gathering of women’s
stories and biographical
timelines through semistructured interviews.
• Interviews transcribed
verbatim and salient
themes identified.
• Emerging themes
interpreted through the
three literary theories.
• Multiple interpretations
create meaning of why
they said ‘no’.
• paternal grandmother's death from breast cancer
1970s • secrecy surrounding diagnosis
1988
• mother's death from gastric cancer
1990
• father's death from prostate cancer
• being strong for siblings
1992
• paternal aunt diagnosed /died from breast cancer
• cancer more than bad luck/familial link
• deadliness of cancer
Feb
2007
Nov
2007
• sister diagnosed with breast cancer
• realisation of seriousness of situation
• sister tests positive for BRCA2 mutation
• further evidence of familial link
• inevitability of cancer
March • Ann undergoes genetic testing
2008
Oct
2008
• Ann receives mutation-positive test result
• no escape from cancer/death sentence
• Ann refuses RRS
March • bodily concerns
2009 • cancer is fate/destiny
May
2011
• negative impact of testing
• concern for children
• constant threat of cancer
Emerging themes
Bodily concerns
Doing the right
thing
How risk is
experienced
Conflict and
contradiction
Resistance
Findings: why they said no
• The genetic risk of cancer
was not conflated with the
disease of cancer hence risk
was not ‘treatable’;
• Differing perceptions of
what ‘high risk’ meant;
• Genetics was not
considered to be the only
‘truth’ about why people
develop cancer and genetic
mutations were understood
as only one of a number of
equally important risks to
health and life;
• Breasts and ovaries were
treasured as vital body parts
which could not be given up
or replaced on the basis of
risk;
• RRS was perceived as
damaging the body and
hence was a greater risk to
self than genetic cancer
risk;
• RRS simply did not make
sense given no disease was
present and given the risks
of surgery to body and self.
Risk is not a disease
• So it just seems so drastic. I don’t [said with
emphasis] have cancer (…) but you are made to feel
like you do. Who is having a heart transplant
because they might get a heart attack in 10 years? It
just doesn’t make sense when you are still healthy. It
would be different if you already had it [cancer]. (R)
• If I had cancer, then obviously I would not refuse
surgery. But I still might not get it [cancer]. Having
the gene doesn’t make it 100% you will get cancer
(…). If I had cancer then I imagine I would want it all
out, everything cut away. But they are cutting out
something that’s not even there. (A)
What does high risk mean?
• The other thing was, they said with the gene fault the risk of
cancer is really high. (…). 10 times higher than for other
people, which made me think “well if it’s so high, it might
happen anyway”, and they couldn’t say “no, it won’t happen”.
So even with it [RRS] there’s no guarantee. Having this gene
means there is a good chance of me getting cancer any way
you look at it. (M)
• Eventually the result came back as BRCA 2 positive and they
told me my chance of getting breast cancer was about 50%
and for ovary, about 15%, much higher than normal. I feel a
bit silly admitting this but I thought the risk would be higher,
like 100%. So yes it’s higher than if I didn’t have the gene, but
it’s still not 100%. I thought if you had the gene, you got it
[cancer] which was the first shock. (P)
Risk and certainty
• There’s no guarantees for any of us. I might get cancer or I might
not. You might get it or you might not. I might have a stroke or get
hit by a bus. (…) I think maybe because I smoke I don’t expect to
live to a ripe old age anyway. (M)
• I said “but mum, even if I get it done, I still might not be here for
her [daughter], that’s life”. But she would just start crying again
and, so, end of conversation. I think in the end I just decided to
take my chances. If they could have given me a guarantee it might
have been different. It just seemed so drastic, having all that done,
when there’s nothing wrong with you (…) and not be able to say it
definitely won’t happen. (S)
• Then I find out even having them take them away [breasts and
ovaries], you can still get it [cancer]. It was like opening a can of
worms. (P)
The paradox of risk
– If I had surgery, every day I’d be thinking, “I’m not a whole woman, it’s not
me”. Tom said it wouldn’t bother him but it would bother me [said with
emphasis]. I wouldn’t be able to let him see me, look at me again, I don’t
think.(R)
– It’s funny because I’ve had a thing about my boobs since [having] kids. They
were huge when I was pregnant and they never really went down again. I must
have been a double G or something and now they are still probably an E cup.
I’ve actually being going on for years before all this about a [breast] reduction.
Then of course when faced with surgery and the thought of losing them,
suddenly they seemed okay, great even. I became really attached to them. You
start to be very conscious (…) of them being there, a part of you. Then knowing
you won’t have them anymore, you really think about what a horrible loss it
would be. (M)
– I’ve seen Sheena’s [sister] [points to breast area] and I don’t like saying this, but
it’s not pretty. I couldn’t cope with looking, you know, if I didn’t need to. It
would be different if I actually had cancer. (…) I don’t like saying this because
it’s saying something bad about other women who have had to have it done,
but I would think I looked [makes ‘squeamish’ face], you know? (P)
Conclusion
Communal
folklore
Acceptance
of RRS
Alternative
discourses
Ideological
practices
Dominant
discourses
Saying no
to RRS
Personal
ideologies
Private
folklore
Transformed
woman
Resistance
Recommendations
• Use of holistic risk communication models
which incorporate psychosocial elements.
• Pro-active and tailored support for high risk
women women who say no to RRS.
• Encourage reflexive practice in HCPs who
support high risk women.
• Longitudinal research which examines
women’s experiences and decisions over time.
• More research into less damaging ways of
dealing with cancer risk.
Thank you for listening.
References
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Acero, L. (2012). Biocapital, biopolitics and biosocialities: Reframing health, livelihoods and environments
with new genetics and biotechnology. In W. Harcourt, (Ed.), Women reclaiming sustainable livelihoods:
spaces lost, spaces gained (pp. 221-237). Basingstoke, England: Palgrave Macmillan.
Denzin, N. K. (1989). Interpretive biography. Beverley Hills, CA: SAGE Publications Inc. Macherey.
Dolby-Stahl, S. K. (1985). A literary folkloristic methodology for the study of meaning in personal narrative.
Journal of Folklore Research, 22(1), 45–69.
Domchek, S. M., Friebel, T. M., Singer, C. F., Evans, D. G., Lynch, H. T., Isaacs, C., ... & Rebbeck, T. R. (2010).
Association of risk-reducing surgery in BRCA1 or BRCA2 mutation carriers with cancer risk and
mortality. Journal of the American Medical Association, 304(9), 967-975
Grady, D., Parker-Pope, T. & Belluck, P. (2013, May 14). Jolie’s disclosure of preventive mastectomy
highlights dilemma. New York Times. Retrieved from http://www.nytimes
Hartmann, L.C. and Lindor, N.M., 2016. The Role of Risk-Reducing Surgery in Hereditary Breast and Ovarian
Cancer. New England Journal of Medicine, 374(5), pp.454-468.
Ingham, S. L., Sperrin, M., Baildam, A., Ross, G. L., Clayton, R., Lalloo, F., ... & Evans, D. G. R. (2013). Riskreducing surgery increases survival in BRCA1/2 mutation carriers unaffected at time of family referral.
Breast Cancer Research and Treatment, 142(3), 611-618
Jolie, A. (2013, May 14). My medical choice. New York Times. Retrieved from http://www.nytimes
National Cancer Institute. (2014). Genetics of breast and gynecologic cancers–for health professionals.
Retrieved from http://www.cancer.gov/types/breast/hp/breast-ovarian-genetics-pdq
Petrucelli N., Daly M., Feldman G.L. (2013). BRCA1 and BRCA2 Hereditary Breast and Ovarian Cancer. In:
Pagon RA, Adam MP, Ardinger HH, et al., editors. GeneReviews® Seattle (WA): University of Washington.
Thompson, L. (1994, January 17). The breast cancer gene – a woman’s dilemma. TIME. Retrieved from
http://content.time.com/time/magazine/article/0,9171,979978,00.html
Summary of literary critiques
• Marxist critique;
– The creation of BRCA1/2 mutations as ‘cancer genes’
adds to their value as biocapital and effectively places
a monetary value on cancer fear
– Ideologies of risk impose a genetic responsibility on
high risk women to make decisions for others.
– An economic discourse underpins genetic medicine in
which the ‘at risk’ body is conceived of as a potential
source of economic gain for various stakeholders in
the HBOC industry.
– Breasts and ovaries are able to be understood as
commodified as assets of varying worth which may be
removed or replaced in the reconstruction
marketplace.
Foucauldian critique
• The medical discourse transmits ‘the truth’
about HBOC and how it can be managed.
• Genetics is a form of medical specialism which
supports biopower – how the State disciplines
and governs the body.
• Genetic technology has expanded the medical
gaze to include those with no disease.
• Disciplinary power operates through genetic
medicine, RRS and cancer surveillance.
Feminist critique
• Many discourses/competing ideologies mean women
are conflicted in how to attend to cancer risk.
• Genetic medicine disproportionately targets women
because women bear offspring.
• Reconstruction is necessary to appeal to the male gaze
resulting in a need to “hide and fake” breast loss (O’Neill,
2013) and is therefore oppressive.
• Saying no to RRS can be understood as resistance to
the official medical pathway for managing risk, but this
resistance was incomplete as they were unable to
transform themselves in a positive way.