New Zealand Women's Experiences of Living with an Increased Risk of Breast and Ovarian Cancer

358 Pages·2011·4.83 MB·English

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“Getting on with it”:
New Zealand Women’s Experiences of Living
with an Increased Risk of Breast and Ovarian
Cancer

A thesis submitted for the Degree of Doctor of Philosophy (PhD)
at the University of Otago

Alison McEwen
March 2011
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Abstract

This thesis explores the experiences of a group of New Zealand women living with an
increased risk of hereditary breast and ovarian cancer. The experience of living with
increased cancer risk has been explored overseas; however this is the first study
examining the experiences of New Zealand women. The study aimed to investigate the
experience of living with an increased risk of breast and ovarian cancer, the ways in
which women make decisions regarding genetic testing and risk management, and the
impact of risk reducing salpingo-oophorectomy and mastectomy on body image and
sexuality.
Qualitative, semi-structured interviews, and a narrative, thematic approach to the data
analysis were used to explore the experiences and stories of thirty-two Pakeha New
Zealand women who carry a BRCA mutation or who have a high risk based on their
family history of cancer.
Decision making is an integral part of the experience of living with an increased risk of
breast and ovarian cancer, as shown by earlier studies. This process begins with the
decision to investigate the family history of cancer. Women go on to make a number of
decisions regarding genetic testing, surveillance and surgical risk management. The
influences on the decisions they make include the information they obtain, their
perception of risk, their family experiences and their perceived responsibilities to their
families. Decision making emerges as fluid, with decisions influenced by the woman’s
specific circumstances and change over time.
“Getting on with it” has emerged as a dominant theme, as the way in which most of
these Pakeha New Zealand women are approaching their risk. “Getting on with it”
appears to be a deeply entrenched social, cultural and gendered expectation in New
Zealand, perhaps influenced by our history as a settler society and the more recent
influences of neo-liberal governance. Neo-liberal governance holds at its heart ideas
regarding individual responsibility. These women, who are prepared to undergo
significant, life-altering and potentially disfiguring surgery in order to be there to fulfil
their family responsibilities, are living out dominant social and political expectations
that we will each take responsibility for our own health and well-being.
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Women choosing to have risk reducing salpingo-oophorectomy and mastectomy face
the removal of body parts that are central to their identity and femininity. In particular,
mothering is central to the identity of many of the participants. Many of the women with
young children describe using their desire to “be there” for their children as they grow
up, as the motivation to undergo risk reducing surgery. I argue that choosing to undergo
the removal of healthy body parts in order to reduce risk and remain alive to fulfil role
expectations provides a symbolic and gendered representation of women as carers and
nurturers.
The implications of the findings for clinical practice in New Zealand are considered.
Possible means of addressing issues identified by this group of women include greater
use of multi-disciplinary clinics, development of more effective means of information
provision and exploring the role of genetic counselling with whanau (family) groups.
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Acknowledgements

To the thirty-two women who participated in the interviews, thank you for your honesty
and courage in sharing your experiences. And to the many other women who have
crossed my path in the course of my working life, and whose experiences have
contributed to my interpretation of the interviews and the literature, thank you also.
To my supervisors, Kevin Dew, Steve Robertson and Allison Kirkman, thank you for
your contributions, thoughts and assistance. Allison, you have provided me with the
best supervision a student could hope for, guiding me along a path on a journey that has
always felt like my own. Thank you for sharing your time, your books, your wisdom
and your experience.
Several people were instrumental in encouraging me to embark on this project. Alison
Gray provided invaluable assistance and experience in completing the interviews.
Dynes McConnell provided the list of potential participants. Esko Wiltshire provided
assistance with the ethics application.
I acknowledge the Todd Foundation Centenary Fund, 2005, for the funding which made
this project possible.
Completing this project while working has been challenging at times. My appreciation
goes to my manager, Joanne Dixon, and my senior colleague, Alice Christian, for their
practical support and encouragement. Caroline Lintott has been a hugely supportive
colleague and friend during the period that I’ve been writing up. Thanks also to my
colleagues in Wellington for covering for me during the times when I’ve taken leave to
work on this project.
Sam Wake and Mary-Anne Young, thank you for reading a draft of my thesis and for
your insightful comments.
My thanks also to the group of women whose friendships have sustained and nourished
me over the past few years, particularly Serena, Anne, Emma, Donna and Rose. Robin
and Susi, thank you for the discussions as I undertook the analysis and for your interest
and support during this project.
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To my partner Chriss, thank you for coming into my life during this journey, for mind-
expanding talks, for sharing your home, Bea, with me as a refuge for writing, and for
the many ways you care for and support me.
And to my daughters, Rachael and Laura. You have been with me from the beginning to
the end of this task, busy doing your own growing up, giving me insight into what it is
to be a mother and reminding me of the importance of family. Thank you.

“Being deeply loved by someone gives you strength; loving someone deeply gives you
courage.”
Lao Tzu
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Table of Contents

Abstract iii

Acknowledgements v

Table of Contents vii

Chapter 1: Introduction: Genetic testing for hereditary breast and ovarian cancer
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1.1 The study 2
1.2 Background to the study 5
1.3 Introducing the participants 6
1.4 Ethnic disparity in New Zealand healthcare and its effect on this study 10
1.5 Theoretical and methodological framework 12
1.6 Thoughts on becoming a practitioner-researcher 14
1.7 Outline of the thesis 16

Chapter 2: The impact of new knowledge on the everyday lives of New Zealand
women: A review of the literature 23
2.1 Theorising risk 23
2.2 Risk perception 28
2.3 Theorising gender 31
2.4 Theorising gender in New Zealand 33
2.5 Theorising women’s bodies 34
2.6 Sexuality 38
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2.7 Living with an increased risk of ovarian cancer 39
2.8 Risk management options 42
2.9 Conclusion 45

Chapter 3: Situating Genetic Services in New Zealand 47
3.1 Healthcare in New Zealand 47
3.2 Genetic Services in New Zealand 49
3.3 The process of cancer genetic counselling 51
3.4 Risk assessment for hereditary breast and ovarian cancer 54
3.5 Genetic testing for hereditary breast and ovarian cancer 56
3.6 Cancer risks associated with BRCA mutations 58
3.7 Medical management for women who carry a BRCA mutation 60
3.7.1 Surveillance for ovarian cancer 61
3.7.2 Risk reducing salpingo-oophorectomy 62
3.7.3 Surveillance for breast cancer 65
3.7.4 Risk reducing mastectomy 67
3.7.5 International differences in the acceptability of risk reducing surgery 68
3.8 Lynch syndrome causing a predisposition to ovarian cancer 68

3.8.1 Cancer risks associated with Lynch syndrome 71
3.8.2 Management of individuals with Lynch syndrome 73
3.9 Conclusion 73
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Chapter 4: Methodological considerations: Theory and practice 75
4.1 Choosing a qualitative methodology 75
4.2 Feminist epistemology 76
4.3 A consideration of the importance of ontology 78
4.4 Negotiating dual roles: Combining research and clinical practice 80
4.4.1 Researcher reflexivity 83
4.4.2 Insider Outsider status 84
4.5 Developing the project 86
4.5.1 Ethics and Funding 89
4.6 Developing the interview guide 90
4.7 Interviewing 94
4.8 Conducting the interviews 97
4.9 Researcher biography and data interpretation 100
4.10 Writing the analysis 104
4.11 Conclusion 106

Chapter 5: Making big decisions: The consequences of a family history of ovarian
and breast cancer 107
5.1 Stories about cancer 108
5.2 Decision making: The common thread 111
5.3 Risk perception 112
5.4 Sources of information for decision making 114
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5.4.1 The internet 116
5.5 Information for risk management 121
5.5.1 Psychosocial aspects of care 124
5.6 Risk management 127
5.6.1 Risk reducing surgery 129
5.6.2 Surveillance 133
5.7 Telling/Not telling 134
5.7.1 Families 134
5.7.2 Friends 135
5.8 Prenatal decisions 137
5.9 Conclusion 138

Chapter 6: Ways of approaching risk: The experiences of a group of New Zealand
women 141
6.1 “Getting on with it” 143
6.1.1 “Getting on with it”: The emergence of a theme 144
6.1.2 “Getting on with it” and risk reducing surgery 145
6.1.3 “Getting on with it”: Societal expectation? 148
6.1.4 “Getting on with it” and the public health discourse 152
6.2 Struggling to “get on with it” 154
6.2.1 Access to medical services for women who struggle to “get on with it”
159
6.2.2 “Getting on with it”: Societal and cultural influences 160
6.3 Ways of approaching risk “run in families” 163