Academic journal article Women's Studies Journal

Ways of Approaching Risk: The Experiences of a Group of New Zealand Women

Academic journal article Women's Studies Journal

Ways of Approaching Risk: The Experiences of a Group of New Zealand Women

Article excerpt

Abstract

The hereditary breast and ovarian cancer syndromes are rare hereditary conditions conferring a potentially high risk of cancer over a woman's lifetime. Technological developments over the past 15 years mean that it is now possible for some individuals to define their own cancer risk, and to take steps to manage this risk. International research has suggested that most women cope well with the knowledge of their risk in the long term. 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. 'Getting on with it' emerged as a dominant theme, as the way in which the majority of the participants in this study approached the risk. 'Getting on with it' appears to be a deeply entrenched social, cultural and gendered expectation in New Zealand, perhaps influenced by both neo-liberal governance and the women's movement. This article explores the way in which this group of women use the idea of 'getting on with it' as a coping strategy to manage their risk and live their lives.

Key words: breast cancer, ovarian cancer, BRCA, risk

Introduction

I always knew I was going to have the test done, but why did I? Because I wanted to know, I wanted to know because I watched Mum die and I thought yep I've got to know [29].

This woman is reflecting on her experience of deciding to have a genetic test that would tell her whether or not she had inherited a change (mutation) in a gene that is associated with an increased risk of developing breast and ovarian cancer. Her narrative, along with those of 31 other women, was drawn on in conducting a project seeking to explore the experiences of New Zealand women living with an increased chance of developing breast and ovarian cancer.

Why do women seek to clarify and understand their chance of developing breast and ovarian cancer? This woman states that, quite simply, she had to know. She frames this statement with the information that she had watched her mother die, with the unspoken implication that she did not want the same thing to happen to her. The test showed that she had inherited a BRCA1 mutation and she went on to have her breasts and ovaries removed. The initial decision regarding genetic testing took her a year to make. Learning that she carried the familial BRCA mutation was so distressing that she was unable to drive home from the appointment. However, once the initial shock had passed, she almost immediately arranged to have a risk reducing salpingo-oophorectomy2. The decision to have risk reducing mastectomy was made on the way home from the appointment to collect her results, although the surgery itself occurred many months later.

Women who carry a mutation in a BRCA gene have a 50-85% chance of developing breast cancer and a 20-40% chance of developing ovarian cancer in their lifetime (Antoniou et al, 2003; Suthers 2007). The options for medical management of the risks include intensive surveillance utilising mammography, magnetic resonance imaging (MRI) and clinical breast examination aimed at the early detection of breast cancer, or risk reducing mastectomies to very substantially reduce the risk (Domchek et al, 2010; Evans et al, 2009; National Institute for Health and Clinical Excellence (NICE), 2006). The efficacy of screening for ovarian cancer is unproven, so the international medical recommendations suggest that these women should have their ovaries removed (risk reducing salpingo-oophorectomy) around age 40 (Domchek et al, 2010).

Women living with an increased cancer risk make many decisions as they seek to understand and manage their risk, communicate with their families and get on with their lives. Each woman brings different influences to bear in her decision making, influences such as her experiences of cancer in her family, her life stage, and her feelings about the different risk management options. …

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