It’s reasonable to ask why the Breast Cancer Patient Education Act, a bill currently before Congress, is aimed specifically at helping “members of racial and ethnic minority groups.” After all, breast cancer afflicts women of all races, ages, and nationalities. And white women are actually the most likely to develop the disease.
The answer is quite disturbing. In far too many cases, minority breast cancer patients receive worse care than their white counterparts. As the authors of the Breast Cancer Patient Education Act are right to recognize, addressing this disparity means ensuring that all women are well-informed about the disease and the options for treating it.
Two facts in particular highlight the challenges faced by minority breast cancer patients. First, even though black women are 10 percent less likely to develop breast cancer than whites, black Americans are the most likely to die from the disease. At the same time, a disproportionate number of black, Hispanic, and Asian patients fail to receive breast reconstructive surgery following their mastectomies.
At their core, the problems that confront minority breast cancer patients have to do with education. The alarmingly high rate of breast-cancer deaths in the black American community, for instance, is largely a failure of early detection. Too often with black patients, tumors aren’t discovered until they have reached an advanced stage. Educating black women about the importance of regular mammograms could, by itself, increase breast-cancer survival rates dramatically.
But detecting the disease is only part of the issue. Once diagnosed, patients are often uninformed about their treatment and reconstruction options, especially when a mastectomy is required. A 2009 study in the Journal of Clinical Oncology indicated that the number of minority women who receive reconstructive surgery after a mastectomy is incredibly low—and not by choice.
Minority women aren’t the only ones who can benefit from more information. It is common for breast cancer patients of all backgrounds and races to make treatment decisions without full knowledge of their surgical options. Even those who do receive reconstructive surgery are often left with disfiguring scars that could have been avoided with a more sophisticated procedure.
The idea that so many patients are being unnecessarily mutilated is deeply distressing to me, not just as a breast cancer surgeon but as a woman. It’s why I have devoted my career to helping women avoid the heart-wrenching choice between losing their life and losing their breasts.
Fortunately, the last few years have seen significant advancements in surgical procedures that effectively eliminate cancer while preserving the look of the breast. In the case of nipple-sparing mastectomies (NSM)—the procedure that Angelina Jolie recently underwent—the nipple and skin remain intact, while the underlying breast tissue is removed. Together with implants or other reconstruction, NSM can leave breasts looking almost exactly as they did before the surgery.
And yet, by a large margin, full-breast and nipple removals—or “simple” mastectomies as they are sometimes called—remain the most common form of mastectomy. Expanding access to NSM and related procedures could spare countless women the extraordinary mental anguish of losing their breasts.
Here, too, patient education is crucial. Before deciding on a course of treatment, breast cancer patients should learn as much as they can about the surgical options available to them. Websites like breastcancersurgeryoptions.com and breastcancer.org can be valuable sources of accessible information.
Physicians also need to stay informed. Believe it or not, many surgeons continue to advise against NSM on the grounds that the procedure is less effective and more difficult than a simple mastectomy. In reality, new devices such as Eigr illuminated breast retractors are making NSM much easier to perform. At the same time, peer-reviewed research continues to demonstrate that, in the right patients, this breast-preserving surgery does not increase the risk of cancer recurrence.
The disparities that exist among breast cancer patients are stark evidence of the value of patient education. Without a more rigorous effort to inform all women about the disease and their surgical treatment options, many breast cancer patients will continue to suffer avoidable deformity and psychological and emotional trauma.
Dr. Rache M. Simmons is chief of breast surgery at New York Presbyterian/Weill Cornell Medical Center.