Preserving the Self: The Process of Decision Making About Hereditary Breast Cancer and Ovarian Cancer Risk Reduction

Women who carry BRCA1 or BRCA2 (BRCA1/2) gene mutations have up to an 88% lifetime risk of breast cancer and up to a 65% lifetime risk of ovarian cancer. Strategies to address these risks include cancer screening and risk-reducing surgery (i.e., mastectomy and salpingo-oophorectomy). We conducted a grounded theory study with 22 BRCA1/2 mutation-carrier women to understand how women make decisions about these risk-reducing strategies. Preserving the self was the overarching decision-making process evident in the participants’ descriptions. This process was shaped by contextual conditions including the characteristics of health services, the nature of hereditary breast and ovarian cancer risk-reduction decisions, gendered roles, and the women’s perceived proximity to cancer. The women engaged in five decision-making styles, and these were characterized by the use of specific decision-making approaches. These findings provide theoretical insights that could inform the provision of decisional support to BRCA1/2 carriers.