Living a Cancer Surveillance Life: A Meta-Ethnographic Synthesis of Everyday Experiences and Ambivalences for Women Living With Hereditary Risk of Breast and/or Ovarian Cancer

Objective: Women with or at risk of hereditary breast- and ovarian cancer (HBOC) often live a surveillance-focused life from young adulthood. As they navigate a life of heightened medical vigilance, or a “cancer surveillance life,” we explore how women with HBOC, as well as their partners and families, experience this particular kind of living through a thorough literature review of existing qualitative research. Methods: We performed Boolean searches in PubMed, EMBASE, EBSCOhost, PSYCHinfo, Scopus, and Web of Science from April–May 2022, identifying 506 relevant articles. After eliminating duplicates and quantitative studies, we systematically analyzed 53 articles. Articles examining all aspects of living with HBOC were eligible for inclusion. Following quality assessment by a verified appraisal tool, 28 articles were included in this review. We undertook an “a-lines-of-argument synthesis,” and identified key similarities across studies to highlight generalizable aspects of living with HBOC. Results: We discovered five central themes which capture the ambivalences experienced by women living with HBOC: (1) an unresolved balancing act regarding genetic testing (2) burdens of relaying genetic information within the family (3) experienced risk discrepancies (4) preservation of the self and: (5) unsettled reproductive feelings. Conclusions: Living with HBOC is filled with ambivalences, which are critical for decision making concerning disclosing risks to family members and children, choosing between risk-reducing surgeries or surveillance, and family planning. Healthcare professionals should be aware of these findings when counseling women and families with HBOC to provide the best support possible in navigating their unique kind of living.