BRCA1 and BRCA2 carriers: Perceptions of endometrial cancer risk

OBJECTIVE: To survey knowledge, preferred information sources, and risk tolerance for EC among BRCA1 and BRCA2 pathogenic variant (PV) carriers. METHODS: Electronic survey of 332 anonymous women. Descriptive statistics presented. RESULTS: Participants included non-Hispanic White (89.3%) United States residents (91.7%), with mean age of 45 years; 50.6% were BRCA 1 and 45.7% were BRCA 2 carriers; 56.7% had undergone risk-reducing surgery, including hysterectomy in 44.3%. Most cited reasons for hysterectomy were physician recommendation and EC risk. Among women with intact uteri, 42.2% or participants indicated that they would undergo hysterectomy if EC risk was ≥15%. When queried about specific EC risk factors, responses of "don't know" (if risk is increased or decreased) were given for 30.9%-75.5%, and specifically for BRCA1: 55.2% and for BRCA2: 72.6%. Participants expressed preferences for sources of information about EC risk (decreasing order) as gynecologic oncologists; medical oncologists; genetic counselors and gynecologists. Respondents indicated that providers recommended hysterectomy for 36.0%, against hysterectomy for 15.7% or gave conflicting information for 16.6%. CONCLUSIONS: Many carriers have limited knowledge of EC risk and do not receive consistent counseling about hysterectomy.