"Getting on with it": New Zealand Women's Experiences of Living with an Increased Risk of Breast and Ovarian Cancer

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.

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.