During National Breast Cancer Awareness Month (NBCAM), and throughout the year, pink ribbons and products abound in supermarkets, shopping malls, magazines, newspapers, television shows, billboards, and work places with inspirational stories from pink ribbon culture to accompany them. The media-friendly interplay of pink femininity and cancer culture provides a light, entertaining, and at times comical depiction of the cause of breast cancer that some, including myself, find disturbing.
Like most everyone else spreading the pink, NBCAM has its own store for pink products. These include the typical t-shirts, pins, and tote bags. But, I was especially concerned about a public service announcement video on the official website. It uses clay animation of a talking pink ribbon with large lips and eyelashes. The ribbon, with a child-like voice, flies from one office cubicle to the next, first to tell an African American woman, and then a white woman, that “early detection saves lives…get a mammogram every year…Tell your friends!”
Go to the NBCAM website to view the Dancing Ribbon.
The animated ribbon makes breast cancer palatable, even laughable, while enforcing the role of mammography screening in solving the breast cancer problem. Pink kitsch produces visibility for the cause and offsets the lingering fear about breast cancer while encouraging individuals to support the cause through consumption and social networking. It’s like a pink pyramid scheme only instead of the individual networker benefiting sometimes exponentially from the transaction, corporations and wealthy nonprofits do.
In addition to the trivial depiction of the cause, the dancing ribbon makes light of a mammography controversy that has been ongoing publicly for a decade and among scientists for longer than that. Despite continued recommendations from the American Cancer Society (co-sponsor of NBCAM along with pharmaceutical company AstraZeneca), clinical trials have not shown that population screening provides adequate benefit. In a 2006 review of 7 clinical trials involving over half a million women that compared the effects of population screening on mortality, Gøtzsche and Nielsen found:
“For every 2000 women invited for screening throughout 10 years, one will have her life prolonged and 10 healthy women, who would not have been diagnosed if there had not been screening, will be treated unnecessarily.”
They concluded that screening decreased the risk of death by about 15 percent for women ages 50 to 69, while increasing the risk of overdiagnosis and overtreatment by about 30 percent. A recent study in Norway of 40,000 women showed a reduction in mortality due to screening of only 10 percent.
The data reviewed suggest that widespread population screening causes more harm than good, and that the benefit of mortality reduction that results for a minority of women is actually relatively small. Yet the limitations of mammography are hard to discuss since there is so much investment in population screening.
Certainly, some groups of women are at a higher risk of breast cancer and for them screening might make sense. Strong family history of the disease may warrant screening. Similarly, it is important to think about group differences. White women develop breast cancer on average over the age of 55, so screening at 50 provides a five-year window for a baseline. Yet African American women under age 45 have a greater incidence of breast cancer than white women in this age range, suggesting that this group of women may benefit from earlier screening. At this juncture, clinical trials have not focused on specific groups of women based on race or ethnicity. For men, the breast cancer incidence rate increased 0.9% between 1975 and 2006, but it had nothing to do with mammography.
What is clear is that population mammography screening has many flaws including high rates of false positives and false negatives, overdiagnosis, and overtreatment. A one size fits all approach to screening is ineffective and harmful to many. Dr. H. Gilbert Welch suggests that there is a growing understanding among doctors that instead of more screening, there should be a dialing down. Unfortunately, the dancing pink ribbon of NBCAM prefers that women jump on the pink bandwagon without seriously considering the risks, benefits, and limitations of this technology.
Gayle, I absolutely agree with you that there is not a one size fits all approach to breast cancer screening. Consider the facts of my own case which I believe show some of the limitations of the current mantra.
At age 33, by chance, I discovered what simply felt like a hardening of tissue in one of my breasts. There was no pea shape, no lump, no hard edges, no pain, and nothing to really suggest anything was amiss except a feeling that I had that something didn’t feel right. Upon meeting with my nurse practitioner I was examined (where she said she couldn’t feel anything), asked some standard questions pertaining to any known risk factors (in my case no family history, no smoking, no obesity etc, no, no, AND no !). I was summarily excused and told to perhaps consider breast massage and come back in 6-months if I still felt something. After begging and pleading, because I just felt something wasn’t right, I was given a prescription for a sonogram, since mammogram wasn’t considered appropriate for my age. Once again, nothing was found, and Nurse P summarily waved me off once again.
At this point, many people would have given up and put this feeling out of their minds. But something inside me wanted definitive answers. I called a trusted friend and got an appointment with her ob-gyn. Once again, this Doctor couldn’t feel anything nor did a second sonogram show anything conclusive. But this time was different. The Doctor listened to my concerns and agreed to send me for a mammogram that day. It came back highly suspicious. Two days later I went for a biopsy and had the diagnosis. Advanced stage invasive ductal carcinoma with axilliary node involvement. Tumor was large but with extremely undefined margins, hence it never felt like much at all, except to me. Oh, and the kicker, turned out I was BRCA1 gene positive as well, despite no family history whatsoever.
So my point in all of this, is that I tend to tune out any discussion that I hear about screenings and awareness as touted by the pink ribbon brigade. My case completely fell outside any of the advertised guidelines related to screening, statistics and risk factors. In fact, it was adherence to those very guidelines that I believe caused that Nurse Practitioner to tune out my concerns and wave me away. I would wager that if I had taken her advice to come back in 6-months, I don’t think I would be here today writing this post, some 7 years later.
I’m not sure where I stand on the recommendations that are currently out there, but the bottom line is this. The touted guidelines failed me, and will continue to fail those women who fall outside the statistical norms. Let’s not get caught up in statistics when it comes to our own bodies. Let’s have policies and a health system that encourages us to be our own advocates. Let people make up their own minds, in consultation with the medical professionals, as to whether they want the stress and other risk factors associated with cancer screenings. If you think something is wrong, find your voice. Be heard. You might just save your own life. You are so right. There is no one size fits all approach to screening (and treatment AND research) for this this insidious disease and this is the danger of a campaign that is primarily focussed on mammography by questionable statistics.
Thank you for sharing this. I’m so glad you trusted yourself and sought answers despite being turned away initially. I especially like your point: “Let’s have policies and a health system that encourages us to be our own advocates. Let people make up their own minds, in consultation with the medical professionals, as to whether they want the stress and other risk factors associated with cancer screenings. If you think something is wrong, find your voice. Be heard. You might just save your own life.” Coming back to that tenet of knowing “our bodies, ourselves” returns us to the beginnings of the women’s health movement. How did we go so far astray?
I don’t really trust mammograms; they can give you a false sense of security.
In early October 2008, being NBCAM, I had my annual mammogram. It came back clear. Thus I was flabbergasted when I felt my little “lump of coal” during my shower the morning of November 30. Being half asleep, I first thought it was simply a large bug bite on my right arm (I had been washing my left underarm when the inside of my right wrist brushed ever so slightly against the tumor popping out of the inside top right quadrant of my left breast). Imagine my surprise when it finally dawned on me that the bump wasn’t on my arm but on my breast. I was able to get an appointment with my primary care physician a couple days later. While waiting to see the doctor, the nurse assistant told me, “lot’s of women get lumps in their breasts before their period.” Excuse me? I’ve been having periods for THIRTY-FOUR years; I’ve NEVER had lumps in my breast before ANY of them! The primary care physician referred me to a surgeon. Three weeks later, the surgeon is asking me, just what did the primary care physician say to you about this? “She just said I needed to see a surgeon.” After feeling my breast, she had the nurse bring in the portable sonogram. After giving me a sonogram, she immediately performed a breast biopsy (not fun). Five days later I had my triple negative cancer diagnosis. Not a good way to start a new year.
I’m so sorry to hear this, Kathy. I can’t tell you how many people have told me a similar things about finding a lump in between mammograms. Eighty percent of women find their cancers themselves, like you did. Too often they are in between diagnostic tests. These stories don’t make for good NBCAM advertisements. No, that was not a good way to start a new year. I hope this is a better year.