Objective: To determine knowledge of gynecologic cancer risk and screening in women with HNPCC.
Study design: Forty-three women with HNPCC were counseled through a gastrointestinal cancer risk program, and later sent a questionnaire regarding their screening practices for gynecologic neoplasms.
Results: Twenty-seven (63%) of 43 responded. Fifteen (55%) of 27 had previously been diagnosed with cancer. Among 16 women with a uterus, 11 (69%) reported surveillance by ultrasound or endometrial sampling. Among 21 respondents with ovaries, 13 (62%) reported screening by ultrasound or CA125. Twenty-two (81%) of 27 had seen a gynecologist after receiving their HNPCC diagnosis, but only 12% recalled hearing about risks from their gynecologist, and 8% from their gynecologic oncologist. Genetic counselors were cited as the most common source (48%) of gynecologic cancer risk information.
Conclusions: While the effectiveness of surveillance remains in question, gynecologists can be a source of information regarding gynecologic cancer risk for women from HNPCC families.