Women with pathogenic BRCA genetic mutations face high risks for cancer development. Estimates vary among mutation carriers, with lifetime risks ranging from 41% to 90% for breast cancer and 8% to 62% for ovarian cancer. Cancer risk management options for BRCA mutation positive (BRCA+) women have life-altering implications. This qualitative, phenomenological study explored the experience of cancer risk management decision making for women who are unaffected carriers of a BRCA mutation (previvors). Fifteen previvors recruited from Facing Our Risk of Cancer Empowered (FORCE), an online informational and support group, were interviewed. Findings consisted of four major themes: the early previvor experience, intense emotional upheaval; the decisional journey, navigating a personal plan for survival; lack of knowledge and experience among health care providers; and support is essential. Findings highlight the different decisional perspectives of previvors based on age and individual factors and the need for increased competence among health care providers.
Keywords: BRCA; genetics/genomics; oncology; phenomenology; qualitative.
© The Author(s) 2014.