The breast cancer movement that came into its own 20 years ago succeeded in bringing attention to breast cancer as a women’s health issue. It brought breast cancer out of the closet, injected federal funds into breast cancer research, created some support systems for certain groups of women, and made inroads with public policy. For a time, the pink ribbon served as a useful symbol to promote this agenda, but today the ribbon has morphed into a logo that has come to represent the breast cancer brand, and as such, has lost its potency for social change.
Yet while there have been marked improvements in treatment that are responsible for the overall decrease in breast cancer deaths in the last few decades, we do not know what causes breast cancer, how to prevent it, how to keep it from coming back post-treatment, or how to prevent people from dying from it. The statistics for metastatic breast cancer (the terminal cancer that spreads to bones, lungs, liver, or brain) remain virtually unchanged. Some 40 thousand people continue to die each year from metastatic disease. Not early stage breast cancer. Pink ribbons do not save these lives. Neither does personal will, an upbeat attitude, or eating all of your fruits and vegetables.
There are also few options for those who are diagnosed with stage zero pre-cancers, known as DCIS (ductal carcinoma in situ). Even though many of them would never progress to become life threatening, they tend to be treated as if they would. Bi-lateral mastectomies remain a treatment of choice for many. Neither of these scenarios represents a success story for breast cancer. Chief medical officer in the American Cancer Society, Otis Brawley MD argues that, doctors have known for some time that not all breast cancers are dangerous. But he says it’s been difficult to figure out how many breast cancers are being treated when they probably don’t need to be. This reality is a hard sell, but it is getting some traction. Dr. Len Lichtenfeld of the American Cancer Society, while noting the successes in the field of breast cancer also acknowledges that the system has “overpromised” and “underdelivered.” Pink parties and superficial awareness campaigns are not bringing us any closer to finding the answers we need.
Pink ribbon culture has been successful in convincing the public to “celebrate breast cancer awareness” to such a degree that the celebration has taken on a life of its own. A person can shop for the cure, laugh for the cure, drink pinktinis for the cure, listen to music for the cure, test-drive a BMW for the cure, watch a porn site for the cure. While all of these activities may leave consumers feeling as though they’ve done something meaningful, such campaigns lack transparency and consumers are usually giving only pennies on the dollar to breast cancer initiatives and in some unscrupulous cases, none at all. Conversely, there are those that feel “any money is good money” and are indifferent to money being donated by companies that may have dubious ties to breast cancer risk factors or that exploit women and sexualize a serious disease.
I recently saw an advertisement from an insurance company stating that, “breast cancer will affect 1 in 8 women.” Then it went on to sell whatever it was selling. The problem? The statement is not true. The chance of a woman getting breast cancer increases with age. By the time a woman would die of old age, about 1 out of 8 who avoided equally serious life-threatening events while younger, would likely to be diagnosed with breast cancer. Seven out of 8 women by that time will not. It’s not like if I’m in a room with seven other women, one of us will definitely get breast cancer so we should all look around and wonder who it is. Such messaging uses fear to try to coerce women to take some kind of action, whether it is to make a lifestyle change, participate in an event, or simply open up their wallets.
Another popular breast cancer awareness message is the importance of breast self exams (BSE). Many of the “boobie campaigns” targeting younger women have focused on BSE as a mechanism for saving your life from breast cancer. In truth, BSE has not been found to find breast cancers early, nor has it been found to provide any survival benefit. The body of evidence for the last ten years at least has pointed to evidence of no benefit for BSE in terms of early detection or mortality reduction. To the contrary, there is strong evidence of harm through excessive biopsies. The boobies campaigns, promoted as fun and light-hearted education, present BSE as something women can do to protect themselves. It is something women can do, and for those without access to quality health care it may be one of few options. But the campaigns send the wrong message by suggesting BSE is a good screening tool. Additionally, such campaigns create an uneasy paradigm that a woman is somehow responsible for detecting her own breast cancer. For those who don’t find it themselves, this is a particularly heavy emotional burden.
Screening mammograms are another overly popularized awareness message. Numerous campaigns resort to peer pressure to persuade women to get mammograms without acknowledging the very real limitations of the screening tool, setting it up as if choosing NOT to have a mammogram is like putting a gun to your head. Komen for the Cure has been called out on numerous occasions, most recently in a British Medical Journal, for suggesting that mammography is a guarantee that a woman will “survive” breast cancer. The advertisement, which is still on Komen’s website, misrepresents survival statistics, taking them out of context to send an overly optimistic message. The accompanying “Get Screened Now” directive also treats women as if they don’t have the capacity to make decisions for themselves. Even worse, there are women who wrongly believe that mammograms are a preventive measure against breast cancer, rather than a diagnostic tool.
Mammograms, if they are successful, detect breast cancers that already exist; they do not prevent breast cancer from developing. What’s more, mammograms miss cancers for a number of reasons, such as the ability of the X-ray to clearly capture the image, the lack of certainty about how to interpret “suspicious” areas on an image, differences in the ability of radiologists to assess images accurately, and the rate of tumor growth. Mette Kalager, MD, a breast cancer surgeon and epidemiologist with the Harvard School of Public Health cautions: “What women have been told before is, ‘You look for cancer and we’ll save you.’ That’s not the whole story. I think we have to inform women about the downside or harm of mammography screening.”
Women need to be their own advocates – stay informed, know their bodies and personal risk factors as much as possible, and act on what they know. Based on this, doctors (if they have them) can recommend age and risk-factor appropriate surveillance plans and diagnostic tools. Equally important is reading between the lines and not accepting anything pink at face value. Look at any donation as an investment in your own health – read the fine print. Ask what organization the product or campaign supports, what percentage is going to the Cause (including any maximum caps or time stamps on the promotion) and, if the proceeds are going to a particular organization investigate that organization’s reputation, policies, programs, and budget allocations.
The breast cancer movement today is split into organizations that “commercialize for the cure” and those that are still working toward systemic change. Since shopping for a cure hasn’t bought us one, its time to shop around for a new approach.