THE FAMILIAL OVARIAN-CANCER REGISTRY - PROGRESS REPORT

BACKGROUND Ovarian cancer can be cured if detected early enough, but u sually has already metastasized when diagnosed. A family history of ov arian cancer is still the strongest known risk factor. OBJECTIVE To id entify women at risk for ovarian cancer and design a program of survei llance. METHODS Prospective registry of women with a family history of ovarian cancer.RESULT From April 1991 to July 1993, 137 women (119 fa milies), mean age 43, registered with the Familial Ovarian Cancer Regi stry. The 119 pedigrees revealed 171 cases of ovarian cancer. Only one family is undocumented by pathology. Forty of 131 registrants have mo re than one relative with ovarian cancer. Six percent of pelvic examin ations were abnormal for potential adnexal disease. In 4% of registran ts, initial CA125 concentrations were abnormal. Ultrasound examination s were abnormal in ovarian size (5%), in morphology (3%), and by resis tive indices (4%). Four ultrasounds were repeated earlier than routine . Using ''standard'' fees, the total cost to diagnose the one case of ovarian cancer discovered was $68 848. CONCLUSIONS This approach still cannot be considered cost-effective. We are continuing to search for genetic and molecular markers of disease in women at greatest risk and in their affected relatives.