BRCA1 and BRCA2 carriers: Perceptions of endometrial cancer risk

To survey knowledge, preferred information sources, and risk tolerance for EC among BRCA1 and BRCA2 pathogenic variant (PV) carriers.

Electronic survey of 332 anonymous women. Descriptive statistics presented.

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%.

Many carriers have limited knowledge of EC risk and do not receive consistent counseling about hysterectomy.