NOVEMBER 1991 - VOLUME 12 - NUMBER 11
F I G H T I N G F O R W O M E N ' S L I V E S
The Breast Cancer Epidemic
by Amy Allina
One in nine women in the United States will be diagnosed with breast cancer in her lifetime. In the United States alone, 44,500 women are expected to die from breast cancer this year. Yet the causes and detection of, as well as the treatment for, breast cancer remain under-researched and the research remains underfunded.
Women's health advocates and activists are quick to point out that if 175,000 men were being diagnosed with testicular cancer each year, the scenario would be very different. In October, Congresswoman Patricia Schroeder, D-Colorado, told a group of breast cancer advocacy groups who had come to Washington, D.C. to lobby Congress for more funding, "Men fund what they fear." Until breast cancer is a more personal threat or until the power of breast cancer organizations becomes, itself, a threat to the overwhelmingly male legislature, Schroeder explained, research money will be scarce.
The National Cancer Institute (NCI) will spend $90.2 million in 1991 on research regarding breast cancer. NCI spokesperson Nancy Volckers says that the largest chunk of the money ($27.8 million) will go toward research into treatment, with about $18 million going to detection and about $12 million being spent on prevention. (The rest is allocated for basic research, epidemiology and rehabilitation). Advocates for women's health research believe that this breakdown is part of the problem, saying it reflects the scientific community's misguided research priorities. They want more money to go toward prevention and toward new methods of early detection, such as blood and serum tests.
Some say that, even if the money continues to go toward treatment, it could be better spent. Virginia Soffa of the Vermont-based Breast Cancer Action Group says that treatment has largely meant mastectomies followed by heavy doses of toxic chemicals. "There is more than enough money for chemotherapeutic trials. It is time to put money into lesser known therapies, better reconstructive techniques and better surgeries that don't leave women as disfigured as our current techniques."
Improvement in treatment would be less necessary, however, if there had been significant advances in detection and prevention. Sadly, despite the hype surrounding recent advances in mammography, thousands of women each year are still subjected to painful, destructive and poorly designed treatments for a disease which doctors do not fully understand.
Still, the possibility of early detection of breast cancer has increased dramatically in recent years as a result of advances in mammography technology and increased public awareness of the benefits of early detection. At a minimum, the improvements mean that women whose cancer is detected earlier can live longer before recurrence; with improved treatment, it may also mean that the cancer can be stopped, and the women will be cured. If breast cancer is caught in the early stages, the five-year survival rates (women living for 5 years without any recurrence of cancer) approach 90 percent.
In recent testimony before the Senate Committee on Labor and Human Resources Subcommittee on Aging, Amy S. Langer, executive director of the National Alliance of Breast Cancer Organizations (NABCO), discussed both the important role that mammograms can play in early detection and their short-comings. "Mammography is not perfect, but it is the only modality that exists to routinely identify breast cancers before they can be felt by a woman or her doctor," Langer explained.
Because women must depend on mammograms, it is of great concern to organizations working against breast cancer that the quality of the mammography is so uneven. Senator Brock Adams, D- Washington, has introduced legislation to establish national standards for the quality of mammography. The bill, S.1777, would require that all mammography facilities meet federally established minimum standards, including using equipment which is specifically designed for taking mammograms, employing technicians who are trained and qualified to perform mammography and employing radiologists who are trained and qualified to interpret the results of the mammograms. The bill would also require that facilities be inspected every year, be recertified every two years and face civil and criminal sanctions if they are found to be out of compliance. Langer welcomes this proposal. In her testimony, she said "the saddest story" that NABCO and organizations like it hear "is the story of the woman who has done everything correctly. She has scheduled her mammogram, and has received a clean bill of health. But she then finds that she is dying of breast cancer ... due to inexperience, poor machine maintenance or the wrong machine."
Several women who have had such experiences testified at the Senate hearing to support Adams' bill. Mary P. Stupp has been told that she will die in six to nine months as a result of an advanced stage breast cancer that was missed by two mammograms. She told the Senate subcommittee: "I was a victim of the system. Poor quality screening; lackadaisical reading of my results; a failure to secure previous mammograms for comparison; and a sense of indifference by the people who [did] my testing [are] all to blame."
Even the best mammogram, interpreted by the most highly trained and conscientious radiologist, is not infallible. Marie-Anne Domsalla, who underwent a double mastectomy at the age of 31 after being told for two years that mammograms did not show the lumps in her breast to be malignant, also expressed frustration with the health care she received. Domsalla said, "I almost lost my life, and I have to worry about my cancer for the rest of my life. I have to depend on these specialists, these tests and these equipments--because there are no other means." She urged that new detection techniques be researched, concluding, "We cannot complacently rely on mammograms. Reconsider the methods for determining breast cancer. A total of three mammograms missed my cancer."
Soffa, who also testified concerning this bill, echoed these concerns about the adequacy of mammography. She raised questions about both its accuracy and its safety, citing a study published in the Journal of the National Cancer Institute which "indicates that there is cause for concern [about] using repeated low-dose x-rays to the chest." Soffa said that mammography "is not low-dose when compared to other x-rays." She also stated that a recent Canadian study which followed 50,000 women for seven years has concluded that in terms of reduced mortality, mammography has no benefit as a general screening device for women in their forties and very little benefit for women in their fifties. (It is important to understand, however, that using mammograms for diagnostic screening on women who have found lumps or are otherwise symptomatic is different than using it as a screening tool for all women.)
Soffa's greatest concern is that women will be misled by manufacturers' advertisements touting mammography as a prevention method and by the legislative emphasis on the benefits of mammography. Some companies which make mammography equipment, such as General Electric, are running television advertisements which encourage viewers to believe that mammograms can save women from breast cancer. "The truth is that women are dying because breast cancer cannot be prevented, not even by a good mammogram," Soffa testified. "Mammograms are not prevention, but merely a method of detecting cancer."
There is still no test which will detect breast cancer as early as, for example, a Pap smear detects cervical cancer. (Pap smears show when cells begin to change on the cervix.) By the time a tumor is visible in a mammogram, it has already been growing for six to eight years. Breast cancer activists emphasize strongly that the real life saver would be a screening test that could detect cell changes before a tumor has a chance to develop.
Soffa told Multinational Monitor that the current ignorance regarding prevention and treatment of the disease encourages a continued dependence on mammography, despite its problems, rather than the development of a better method of detection. She explains, "We know what to do to a lump. If we see there is a lump, we have a way of treating it. We cut it out." Until doctors know what to do to prevent the development of breast cancer tumors, earlier detection will be unlikely to improve mortality rates.
Langer, who, like Soffa, has had breast cancer, also notes the interconnection between developments in detection, prevention and treatment. "The frustration is that even if we find out who is going to get breast cancer, we still don't know how to prevent or treat it." This problem confronts many women today, she says, since daughters of women with breast cancer are known to be at high risk of developing the disease. "All that we can counsel these terrified women is to be hypervigilant in terms of screening," Langer says. "If I have a daughter, I won't know what to do to protect her."
Although most doctors agree that women whose families show a history of breast cancer and other cancers are at greater risk of developing breast cancer, women have very little concrete knowledge on which to base their attempts to avoid the disease. Seventy percent of the women who get breast cancer do not fall into any of the known risk categories.
This statistic, however, may be largely a reflection of the deficiencies of the research that has been conducted. There are a number of possible risk factors that are rarely, if ever, mentioned by the medical establishment, such as carcinogens in foods, exposure to toxics on the job and work or home proximity to toxic waste dumps. This last factor is of particular relevance to African-American women, whose rates of breast cancer are higher than rates for white women and who, according to recent studies, disproportionately live near toxic waste disposal areas.
The National Cancer Institute is funding some research into the relationship between diet and breast cancer. Langer calls this "the most hopeful area of research." She cites research done in Italy that shows a connection between high fat diets and breast cancer. But she adds that the U.S. study of the specific link between diet and breast cancer was first delayed and then folded into a general study of dietary changes. "The chances of having useful information quickly are not very good," she concludes.
Some women with breast cancer are following experimental low-fat diets already, however, on the theory that cutting down on fat will certainly not hurt them. Virginia Soffa advocates even greater changes, such as giving up dairy products and meats because they are contaminated with hormones. Because breast cancer growth has been shown to be affected by hormones, she believes that women who continue to ingest synthetic hormones are doing themselves great harm. Carcinogenic pesticides on vegetables which are not raised organically also concern Soffa, who has switched to a grain-based diet since she was diagnosed with breast cancer.
Perhaps as a result of the pressure it is feeling to work on prevention, the NCI is currently planning to test the preventive abilities of a drug now being used for the treatment of breast cancer. Tamoxifen, which is manufactured by the British-based Imperial Chemical Industries (ICI), has been used successfully to halt the development of cancers in post-menopausal women, and evidence suggests that women who have had cancer in one breast can prevent the development of tumors in the other breast by taking tamoxifen. NIH is now considering a trial of the drug on healthy women as a preventive measure against breast cancer. While they are anxious for developments in prevention, women's health advocates and many scientists have serious questions about the proposed trial.
They point out that there is still much that can be learned from observing the long-term health effects of the drug on women who are taking it to halt the development of already developed cancers.
Cynthia Pearson of the National Women's Health Network says that women taking tamoxifen face a small chance (approximately one to three percent with five years use) of blood clots and endometrial cancer. She says that while for women with breast cancer this level of risk is outweighed by the potential benefit of lowering a 20 to 30 percent chance of recurrence, it is not an acceptable risk for apparently healthy women. There may be other risks associated with long-term use, as well. Rats which are given tamoxifen doses metabolically equivalent to those given to women have developed high rates of liver cancer after long-term exposure. Pearson criticizes the proposed NCI study, saying that to test a drug that has been shown to cause liver cancer in laboratory animals on healthy women as a breast cancer preventor is simply to trade one disease for another.
Challenging the medical establishment
As the number of breast cancer diagnoses rises and more women are forced to confront both the disease and the scientific and medical community's weaknesses in dealing with it, dissatisfaction is growing. Soffa says she is not willing to let stand "the myth that breast cancer is under control." More and more women are demanding that women with breast cancer participate in every level of the decision-making process, from individual treatment decisions between women and their doctors, to regulatory decisions made by government agencies, to determining the research agenda for the scientific community.
Soffa sees the challenge posed by grassroots groups such as hers as the most hopeful development of recent years, saying they may succeed in pressuring the medical establishment to change its approach to breast cancer. She says, "There are 1.6 million women living with breast cancer. Our only hope now is that these women will raise their voices and say what they want and what is wrong with what they have gotten" from their doctors.