Second in a two-part series.
At a national cancer meeting in 1997, Lynn C. Hartmann, M.D., reported a 90% breast cancer risk reduction in women at high and moderate risk who had undergone a bilateral prophylactic mastectomy. It was as if she had dropped a bombshell.
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But even today, data from new studies on the drastic procedure have yet to provide definitive answers. Michael Pignone, M.D., Ph.D., assistant professor of medicine at the University of North Carolina at Chapel Hill, questioned whether practitioners overestimate risk-reduction potential, for example, using the 90% risk-reduction estimate from Hartmanns study. "The 90% is usually compared with historic controls," said Pignone. "However, since no randomized controlled trials have been done, I am not sure we really know what the true risk reduction is, or how it compares to other strategies like frequent mammograms or tamoxifen."
The study by Hartmann, who is the director of the Womens Cancer Program at the Mayo Clinic, Rochester, Minn., included 639 women with a family history of breast cancer who had undergone bilateral prophylactic mastectomy at the Mayo Clinic between 1960 and 1993. It was later published in the Jan. 14, 1999, New England Journal of Medicine. It provoked controversy, but it also helped illuminate the sheer complexities of decision-making for women with an elevated risk for breast cancer.
Better Data, More Options
The menu of risk-reducing options is staggering. It includes prophylactic oophorectomy, chemoprevention, intensified surveillance, and novel imaging techniques designed to assess hard-to-image breasts. "We now have considerably more data than we did in 1997," said Hartmann. "We have really made progress."
Genetic testing has also helped narrow the subset of at-risk women. "In the past," Hartmann said, "we treated all women with a lot of breast cancer in a family the same, even though we know only half of them inherited [a high-risk gene mutation for] breast cancer."
Recently, Hartmann looked at the gene mutation carriers from the Mayo Clinic series. "None of the known mutation carriers [who underwent prophylactic mastectomy] have developed breast cancer, suggesting no major change in the efficacy of the procedure," she said.
Preliminary data from Barbara Weber, M.D., and her colleagues also suggested that gene carriers lower their risk with the procedure, said Weber, professor of medicine and genetics at the University of Pennsylvania, Philadelphia. However, data are still being collected. "In the interim, we continue to provide enhanced surveillance for these very high-risk women and support prophylactic surgery for women who have carefully considered the decision with the currently available information," Weber said.
No other technique has been shown to reduce breast cancer risk as much as prophylactic mastectomy. However, many physicians are reluctant to recommend it. Michael Stefanek, Ph.D., chief of NCIs Basic Biobehavioral Research Branch, said "The trend now is for more physician-patient joint decision making, away from physicians issuing directives, to more of a patient-led collaborative role."
In addition, Stefanek pointed out that both patients and providers are hesitant to remove what is and may always be healthy tissue to prevent a disease that may never occur. "There are also lingering doubts about the surgerys possible impact on the quality of life and sexual relationships for women who have their breasts removed," he said.
Stefanek also said that "varying degrees of optimism about the future of breast cancer research" also serves as a deterrent to promoting a prophylactic mastectomy. Deep down, "people may wonder whether the surgery will have been wasted," he explained. "Mix all that up with the personality of the woman in question, and you have a very complex, difficult decision."
Jeanne Petrek, M.D., breast cancer surgeon at Memorial Sloan-Kettering Cancer Center in New York, identified other disincentives. "It is a huge operation and much more extensive than a standard mastectomy," she said." It is also very visible and painful.
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Women are "going more often for oophorectomy," said Patricia Ganz, M.D. Yet she pointed to an upsurge among women who have already had cancer, multiple biopsies, or extensive multifocal ductal carcinoma in situ, or those with close family members who had lethal cancers.
To the extent that it occurs, "it is being driven by womens fears," Ganz maintained. "Women express a little fear and physicians pick up on it and try to be helpful," said Ganz. "It is a dance that the patient and doctor go through."
Further complicating the issue is the concern that so many women overestimate their risk. Weber said that an accurate risk assessment is key. "We hope that women will be open to what we have to tell them, but we also have to realize that for some women with very strong family histories, to them, their breasts are ticking time bombs. We must make sure that we are not judgmental," she added.
Weber observed that few women understand their risk. "Even in BRCA1 gene mutation carriers, who have a 60% to 70% risk [of developing breast cancer], 30% will die of breast cancer," she said, "but that assumes you are talking about all comers."
"Obviously, having a mastectomy can be a big event for a woman, but persistent worry and fear of cancer can be, too," said Pignone. "Ideally, physicians should have accurate data, then discuss the options, and arrive at a plan together with patients. To get there, we need to get better information and present it so that each womans values are factored into the final decision."
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