The familial ovarian cancer registry: progress report

BACKGROUND Ovarian cancer can be cured if detected early enough, but usually has already metastasized when diagnosed. A family history of ovarian cancer is still the strongest known risk factor.

OBJECTIVE To identify women at risk for ovarian cancer and design a program of surveillance.

METHODS Prospective registry of women with a family history of ovarian cancer.

RESULT From April 1991 to July 1993, 137 women (119 families), mean age 43, registered with the Familial Ovarian Cancer Registry. The 119 pedigrees revealed 171 cases of ovarian cancer. Only one family is undocumented by pathology. Forty of 137 registrants have more than one relative with ovarian cancer. Six percent of pelvic examinations were abnormal for potential adnexal disease. In 4% of registrants, initial CA125 concentrations were abnormal. Ultrasound examinations were abnormal in ovarian size (5%), in morphology (3%), and by resistive 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.