Newsletter #36–June 1996
From the Executive Director:
Off With Their Breasts!
by Barbara A. Brenner
Breasts are being severed from women’s bodies at record rates, quite possibly for no good reason. Over the last few months, several newspaper articles have suggested that having your breasts removed may prevent breast cancer. One set of articles focused on ductal carcinoma in situ (DCIS), the other on genetic testing. Neither story spoke of the unknown consequences of this drastic action or of the need for women to be given complete information before undertaking it.
DCIS (also called intraductal carcinoma) is a tumor confined to a milk duct of the breast. In 1992, 23,000 cases of DCIS were diagnosed, five times more than in 1977. The higher numbers result from the increased use of mammography, which finds the small nonpalpable tumors.
The few studies of DCIS that have been conducted suggest that untreated DCIS will develop into life-threatening invasive ductal breast cancer in 20 to 25 percent of cases.1 The dilemma that a woman with DCIS confronts is that there is no existing test that permits her to determine whether her condition will progress to invasive breast cancer. Yet, more than 10,000 of the 23,000 women diagnosed with DCIS in 1992 those mastectomy as treatment.2
Despite the uncertainty about prognosis, the treatment a woman receives appears to depend in part on where she lives. The treatment options include mastectomy, lumpectomy alone, lumpectomy plus radiation or simply “watchful waiting” to see whether and how the DCIS progresses.
Virginia Ernster, epidemiologist at University of California, San Francisco, who studied treatment patterns of DCIS, found that, in 1992, 23.8 percent of Connecticut women with DCIS were treated by mastectomy, compared to 57.7 percent of New Mexican women with DCIS.3 What is unknown is whether women who chose to have their breasts removed knew that it was uncertain whether their DCIS would progress to invasive breast cancer.
The possible over-treatment of DCIS and our state of ignorance about this aspect of breast cancer raises yet again the need for meaningful early detection-safe procedures that tell us not only whether we have breast cancer, but whether and how that cancer is likely to progress. Until we have good prognostic indicators, ever-increasing numbers of women will be faced with unsatisfactory choices.
It is equally clear that the BRCA1 test for genetic susceptibility to breast cancer is not the early detection tool we need. As BCA’s Policy on Genetic Testing for Breast Cancer Susceptibility explains, a positive result from the BRCA1 test does not mean that the person tested will develop breast cancer. (Nor does a negative test mean she is not at risk.) And, even if a positive test meant a woman would certainly develop the disease, there is currently no known effective method of preventing breast cancer. Prophylactic mastectomy does not prevent breast cancer, since breast tissue remains even after this drastic surgery. Add to these uncertainties the potential for insurance and employment discrimination, not to mention the emotional upheaval of a positive or negative result, and it becomes evident that we should be a long way from offering a test for BRCA1 to anyone who wants it.
Unfortunately, the grave limitations of current genetic knowledge are not keeping some commercial enterprises from marketing a BRCA1 test to a wide audience. The promotional materials, distributed by Myriad Genetics Laboratories for the test that the company will soon market, suggest that almost anyone may benefit from BRCA1 testing.4 At least one doctor shares this view and is already offering the test to anyone who asks for it, in the name of a woman’s right to know. Dr. Joseph D. Schulman, director of the Genetics and I.V.F. Institute of Fairfax, Virginia, is offering the test for a mere $295, stating that it is patronizing for scientists to withhold the test from women simply because there are, so many unresolved medical, legal and ethical issues raised by it.5
Dr. Schulman’s willingness to profit from genetic testing apparently derives from a maverick scientific analysis and from a deep personal interest. He baldly rejects the notion that prophylactic mastectomies do not prevent breast cancer, stating that “there isn’t a single rational person in the world who really believes that.”6 Dr. Schulman makes these assertions despite the fact that no study has been done to date on either the incidence of breast cancer in women who have had prophylactic mastectomies, or even the number of women who have chosen prophylactic surgery.
In the absence of any evidence to support his assertions, Dr. Schulman’s marketing of a test for the BRCA1 gene smacks of arrogance. And that arrogance has consequences. Dr. Schulman’s 38-year-old wife Dixie, whose mother, grandmother and greatgrandmother all had breast cancer, was one of the first people the good doctor tested. Based on her positive test result, Dixie Schulman has decided to have both her breasts and her ovaries removed prophylactically.
While Dixie Schulman may achieve peace of mind by having her breasts and ovaries removed, these surgeries are hardly guarantees against developing breast cancer. It is past time that research dollars be devoted to finding real detection and real prevention. And past time for women to be told the truth: removing breasts may not be necessary to treat DCIS, and may not be sufficient for—or even relevant to—preventing breast cancer.
1 Love, S. Dr. Susan Love's Breast Book, p. 227 (2nd Edition, Addison Wesley, 1995.)
2 "Tiny Tumors Need More Research," The San Francisco Chronicle, March 28, 1996.
3 Ibid.
4 See "BRCA1 Genetic Susceptibility for Breast and Ovarian Cancer: A Reference for Healthcare Professionals in Anticipation of BRCA1 Genetic Susceptibility Testing," Myriad Genetics Laboratories, Inc., January 1996.
5 "Breaking Ranks, Lab Offers Test To Assess Risk of Breast Cancer" The New York Times, April 1, 1996