Cancer risk management decision making for BRCA+ women.
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.
Emmanuel College, Boston, MA, USA jabaleyt@emmanuel.edu.
Terri Jabaley
TJ
Leonarczyk
University of Massachusetts Lowell, MA, USA.
Barbara E
BE
Mawn
D000328:Adult; D001943:Breast Neoplasms / Q000175:diagnosis* / Q000235:genetics / Q000628:therapy; D003657:Decision Making; D005260:Female; D019398:Genes, BRCA1; D020022:Genetic Predisposition to Disease; D005820:Genetic Testing / Q000379:methods; D006801:Humans; D008875:Middle Aged; D009154:Mutation; D010051:Ovarian Neoplasms / Q000175:diagnosis* / Q000235:genetics / Q000628:therapy; D036301:Qualitative Research; D012308:Risk Management / Q000379:methods*
BRCA; genetics/genomics; oncology; phenomenology; qualitative