Published on Sunday, December 23, 2001 in the Los Angeles Times
The Pink-Ribbon Trap
Breast cancer activism has to go beyond simply encouraging women to get mammograms and joining support groups
by Barbara Brenner and Barbara Ehrenreich
For almost a decade, American women, along with their families and friends, have marched, run, hiked and even climbed mountains in the name of breast-cancer "awareness. " They have affixed pink ribbons to their lapels or worn special breast-cancer-themed garments like the Ralph Lauren pink pony T-shirt. They have distributed and displayed hundreds of breast cancer-related tschotchkes, from pink teddy bears to breast cancer awareness bank checks. One goal of all this activism has been to raise money for breast-cancer research, but the larger, more diffuse, aim is always "awareness": getting out the message that "early detection saves lives" and that the best means of detection is the annual screening mammogram, or, as Rosie O'Donnell puts it, going out and getting "squished. " So it must have come as a shock to most of America's grass-roots breast-cancer activists that a Danish study, reported in the Oct. 20 Lancet, found no evidence that routine mammography reduces the death rate from breast cancer. There will be continuing debate and no doubt--given the American medical establishment's huge financial investment in mammography screening--sharp attacks on the Danish study. But this is not the first major study to challenge the dogma that mammography is our first and best line of defense against the disease. It was five years ago, in 1996, that David Plotkin, director of the Memorial Cancer Research Foundation of Southern California, concluded from a review of studies available then that the benefits of routine mammography are "not well established; if they do exist, they are not as great as many women hope."
True, mammography may, in some cases, detect tumors at an earlier and more treatable phase than that at which they might otherwise have been discovered. One of us was diagnosed by mammography, and, as a result, possibly treated at an earlier phase of the disease than she might have been otherwise. But the mass mammographic screening of healthy women has significant downsides, too. For one thing, not all cancers are detectable by mammography --as the other of us knows too well from her own diagnoses. Twice, she found tumors through breast self-examination that recent mammograms had missed. And for every breast cancer that is detected by mammogram, there are two to four false alarms: so-called "bad" mammograms leading, unnecessarily, to anxiety-producing and sometimes disfiguring surgical biopsies.
Furthermore, mammography carries its own risks, as a woman can't help but note when the mammography technician dashes for shelter behind a lead shield before flicking on the machine. It has to be the ultimate irony that the technology we rely on to detect breast cancer utilizes ionizing radiation, which is, at this point, also the only well-established cause of breast cancer.
But perhaps the most insidious effect of our mass reliance on mammograms has been to induce a dangerous complacency about current medical approaches to breast-cancer treatment. Implicit in the drumbeat for regular mammograms was the promise that your cancer could be cured--if only you bring it to the doctors' attention early enough. But not all small tumors are "early" and more easily treated. Worse, current treatments--surgery, chemotherapy and radiation--carry no guarantee of long-term survival and are notoriously debilitating and disfiguring themselves. Every year, more than 40,000 American women die of breast cancer, large numbers of whom had duly submitted to screening mammograms and to the nightmarish treatments that ensued.
It's time to admit that, contrary to the promotion for mammograms, the disease is not always treatable, no matter how "early" detection takes place. In fact, we should probably stop talking about "breast cancer" as if it were a single disease. There are many forms of breast cancer. Some are highly treatable, others are not.
The emphasis on mammograms has put the burden of fighting the disease squarely on women themselves: Have your mammograms, or it's your own fault if you end up with an advanced case of breast cancer. Beyond that, women are often made to feel that the outcome of their treatments depends on their attitude--an idea derived in part from a 1989 study showing that breast-cancer support groups gave women with metastatic disease both a more optimistic outlook and a 25% increase in longevity. But a new, larger and more definitive study published on Dec. 13 found that participation in support groups adds nothing to a patient's life expectancy. While sharing experiences can be psychologically helpful, we need to understand that a good attitude won't cure the disease, and a bad attitude won't accelerate it.
Most women would like nothing better than to have more control over the detection and course of their disease. But it's beginning to look like there's not much we can do as individuals. What we can do is band together to demand better treatments, more research into the causes of the disease and more reliable methods of detection. On the detection front, there is one piece of good news: A recently completed clinical trial in Canada showed that low-tech, manual breast exams by trained medical providers are at least as likely to save lives as mammograms. But it will take a major paradigm shift to wean the American breast-cancer establishment away from its reliance on mammograms, and this is unlikely to happen unless and until American women demand it.
What we really need, then, is a new kind of breast-cancer activism. Today we are all fully "aware," thank you very much, and the time has come for a more outward-looking approach, one that shifts the burden back onto the medical and scientific establishment. A newly invigorated breast-cancer movement will not be as pink and cuddly as the one it replaces; it will be angry and shrill at times. But that's how the breast-cancer movement began 10 to 15 years ago--with protests and marches to demand more research and less damaging forms of treatment. We didn't abolish the most savage form of breast-cancer surgery--the Halstead radical mastectomy--or win women the right to participate in their treatment decisions by "racing for the cure" or wearing pink ribbons.
Yes, it's hard to relinquish a comforting faith, such as the one the mammography dogma represented. But we all live with uncertainty every day--or certainly have for the last several months. Women can, and must, face up to the failures of breast-cancer detection and treatment methods if we are to mobilize effectively against the epidemic.
Barbara Brenner is the director of Breast Cancer Action in San Francisco. Barbara Ehrenreich is the author of "Nickel and Dimed: On (Not) Getting By in America."Women are often made to feel that treatment outcomes depend on their attitudes.
Copyright 2001 Los Angeles Times