Maximising survival: The main concern of women with hereditary breast and ovarian cancer who undergo genetic testing for BRCA1/2

PurposeLittle is known about how women with hereditary breast and/or ovarian cancer who test positive for a BRCA gene manage the impact of a positive test result on their everyday lives and in the longer term. This study defined the experience and needs of women with hereditary breast and ovarian cancer and a positive BRCA test over time.MethodsA grounded theory approach was taken using qualitative interviews (n = 49) and reflective diaries. Data collected from December 2006 until March 2010 was analysed using the constant comparative technique to trace the development of how women manage their concerns of inherited cancer.ResultsA four stage substantive theory of maximising survival was generated that defines the experience of women and how they resolve their main concerns. The process of maximising survival begins prior to genetic testing in women from high risk families as they expect to get a cancer diagnosis at some time. Women with cancer felt they had experienced the worst with a cancer diagnosis and altruistically tested for the sake of their children but a positive test result temporarily shifted their focus to decision-making around their personal health needs.ConclusionThis study adds to clinical practice through raising awareness and adding insights into how women cope with living with inherited cancer risk and the personal and familial ramifications that ensue from it. A clear multi-professional structured care pathway for women from genetic testing result disclosure to undergoing risk-reducing surgery and/or surveillance should be developed.