Few Patients Surveyed Regret Prophylactic Mastectomy

MIAMI BEACH, Fla--Few women who undergo voluntary bilateral mastec-tomyas a prophylactic measure have regrets about having the surgery performed,according to a survey of 322 women who had the procedure. Patrick Borgen,MD, chief of the Breast Service at Memorial Sloan-Kettering Cancer Center,presented the data at the 14th Annual International Breast Cancer Conference.

Growing numbers of patients who test positive for a germline mutationin BRCA1 or BRCA2 are seeking prophylactic removal of the breasts, Dr.Borgen said, yet virtually nothing is known about the acceptance, efficacy,or long-term effects of this procedure.

This situation led the researchers to construct a national volunteerProphylactic Mastectomy Registry. The women are self-selected by virtueof responding to advertisements in major United States magazines, primarilyModern Maturity, the monthly magazine produced by the American Associationof Retired Persons. The respondents fill out a questionnaire about themselves,their operations, and their feelings about the procedures.

So far, more than 700 women have responded to the advertisements, andthe registry continues to grow. "We are about to begin an outreachprogram to members of the American College of Surgeons to supplement thisdata set," he said.

Dr. Borgen pointed out that none of the women in the study had a diagnosisof cancer, and available evidence may suggest but does not prove that theprocedure prevents cancer. He called bilateral mastectomy for the preventionof cancer "an untested, unproven, putative preventive measure,"citing the lack of prospective studies.

Only Two Cases

The current survey, albeit unscientific, suggests that the proceduremay be effective. Normally, Dr. Borgen said, in a cohort such as that involvedin the survey, he would expect to find 30 cases of breast cancer; instead,the women reported just two cases--one woman developed breast cancer fiveyears after the double mastectomy; the other, 20 years after surgery. Bothwomen are now cancer free.

The women's reasons for having the operation included a strong familyhistory of breast cancer, previous biopsies for suspicious lumps, and heavilyfibrous breast tissue, which sometimes masks cancer from screening methods.

The vast majority of the women (83%) had undergone biopsies prior totheir surgery, and most had had more than one biopsy. (One woman had undergone25 procedures.)

Dr. Borgen said that in 68% of the cases, the woman's physician wasthe first to broach the subject of bilateral prophylactic mastectomy. About29% of the women told the researchers they had initiated discussion aboutthe operation.

About 94% of the women in the survey said that they had no regrets aboutundergoing the procedure. But among the 19 women who did express regret,all said that their doctors had initiated the discussions of prophylacticsurgery. Dr. Borgen said that of these women, one third did not have afirst-degree relative with breast cancer.

He was surprised to find that only about 12% of the women who had bilateralprophylactic mastectomy had received any psychological counseling. Justone of the 18 women who were unhappy about having undergone the procedurehad received counseling before surgery.

Only 3% of the women had been tested for cancer-associated BRCA1 andBRCA2 gene mutations, mainly because the procedures were done between 1945and 1995--in most cases, years before those genes were known.

Dr. Borgen says that while the survey lacks some degree of scientificvalidity, "there is still much to be learned from it," includinginformation on the role of genetics in cancer development.