“It’s not if I get cancer, it’s when I get cancer”: BRCA-positive patients’ (un)certain health experiences regarding hereditary breast and ovarian cancer risk

Abstract

RationaleWomen with a harmful mutation in the BReast CAncer (BRCA) gene are at significantly increased risk of developing hereditary breast and ovarian cancer (HBOC) during their lifetime, compared to those without. Such patients—with a genetic predisposition to develop cancer but who have not yet been diagnosed with cancer—live in a constant state of uncertainty and wonder not if they might get cancer but when. ObjectiveFramed by uncertainty management theory, the purpose of this study was to explore BRCA-positive patients’ health experiences after testing positive for the BRCA genetic mutation, specifically identifying their sources of uncertainty. MethodsThirty-four, qualitative interviews were conducted with female patients. Participants responded to online research postings on the non-profit organization Facing Our Risk of Cancer Empowered’s (FORCE) message board and social media pages as well as HBOC-specific Facebook groups. The interview data were coded using the constant comparison method. ResultsTwo major themes representing BRCA-positive patients’ sources of uncertainty regarding their genetic predisposition and health experiences emerged from the data. Medical uncertainty included the following three subthemes: the unknown future, medical appointments, and personal cancer scares. Familial uncertainty encompassed the subthemes traumatic family cancer memories and motherhood. ConclusionsOverall, the study supports and extends existing research on uncertainty—revealing uncertainty is inherent in BRCA-positive patients’ health experiences—and offers new insight regarding uncertainty management and HBOC risk.