“What I wish people knew about breast cancer…”

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.

Atlanta Falcons Cheerleaders

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.

In addition to the festive fundraising and awareness campaigns, there is also a lot of fearmongering and misinformation circulating about breast cancer.

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.

001 ProjectBoobiesAnother 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.”

In Sum

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.


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12 comments to “What I wish people knew about breast cancer…”

  • Some women do not have doctors so the BSE’s and mammograms are helpful tools. I’m not saying they are perfect but you are writing this as if everyone has a doctor and that doctor has the time and inclination to sit down and actually discuss “appropriate surveillance” when in fact, they do not.

  • You make a good point, Joede. Access to quality care is a prerequisite for any of this. Adding that caveat to the essay.

  • Kristine

    I HATE this article – I am a breast cancer survivor and considered young for the disease when I was diagnosed at the age of 41. I had a mammogram 6 months prior to finding my lump via self exam and then was diagnosed with Triple Negative Breast Cancer grade 3 – one of the deadliest breast cancers and the fastest moving. Had I not done my self exam I would not be here today because once the tumor was found a mammogram again showed nothing once we tried it out “just to see” if it would show. I was too young for a mammogram to help me because of my dense breast tissue and I really wish people would quit reporting that there is no benefit to them. I just find everytime I hear it I am mortified. DO YOUR SELF EXAMS and please do not listen to this BS!

  • Linda

    Women need to be more informed about their bodies and even if you have to go to a health department get the mammogram every yeah My doctor was very informative and did answer my questions

  • Being as informed as we can about our bodies is crucial. I think we agree on that point. It is also understandable, Kristine, that someone would appreciate the screening tool that saved their own life. But the data from populations shows that our screening tools are insufficient, especially because they do not guarantee that any diagnosis (no matter what stage) will not eventually be terminal. Too many people are diagnosed at stage 1, 2, 3 (even stage zero sometimes) and they eventually find themselves with a breast cancer recurrence. We need better tools.

  • tina

    I found both my Triple Negative Cancer tumors on a self exam. My first tumor (2.5) was in 2008 after having a negative Mammogram 5 months before. I had 6 surgeries including a mastectomy and 6 rounds of chemo. I found on a Self Exam two years exactly and again after a negative Mammogram, a 1cm tumor on my new fake breast. It was sitting on top of my implant. The cancer not only came back, it came back in the breast that really was no longer there.I then had to have two more surgeries, 16 rounds of chemo and 37 radiation treatments. If I had not done a self exam both times, I would have never found the tumors and my next mammogram wasn’t for another 7 months. Triple Negative Breast cancer is aggressive and it grows quickly. I was only 42 when I was dignosed the first time, now I am 46, I might have not survived my battle with breast cancer if I hadn’t have done the Self Breast Exam!

  • Lin

    This is not bullshit! I have Stage IIIC Inflammatory Breast Cancer that literally came on overnight — that is how aggressive and deadly it is. It is not a lump, doesn’t show in mammograms but could appear weeks after a mammogram so the mammogram wouldn’t matter anyway. Not all breast cancers are lumps and all the Pinkwashing has lumped it all together and made it a pink, happy dance celebration which it is not. Treatment for IBC is one full year or more of very aggressive treatment — chemo (losing hair, eyebrows, eyelashes), mastectomy without reconstruction due to its high recurrence rate — everyone assumes these days that it is no big dead because you get a new boob, and then 7 weeks of daily radiation. Depending on hormone status, treatment may continue. Early detection and mammograms is not enough and shouldn’t desensitize how deadly breast cancer still is.

  • Elaine

    That there is a very diverse personal experience of diagnosis of breast cancer, and there are so many types of breast cancer, and the individual woman (or man”s) experience speaks to the subtleties of the diagnosis, and the entire course must be thought of in a more individualized way. Indeed, I will venture to say, therein lies a future, I hope not too distant cure, personalized medicine, where our tumor culture is analyzed, and much more known about it that today, leading to a treatment with a much higher likelihood to work, or, dare I say, even cure, Stage IV breast cancer. I was diagnosed at 47 with infiltrating lobular bc, 4+ lymph nodes, Stage III. I began receiving mammograms at age 30, 17 years before, because I was being followed for benign cysts. I had a couple of ultrasounds along the way, but in August of 2005 received a clear test, even though I had a palpable lump. I returned that November, this time receiving an ultrasound and was diagnosed with multi-centric disease including that lump, 5cm.(the size of a chicken egg). Why did my mammogram not provide me with an early diagnosis? I had dense breast tissue, highly estrogenic and hard to see through. For ten or more years, as I had a slow growing breast cancer, I was being followed for what was thought to be benign cysts which had always been cancerous.

  • Elaine

    After the trifecta of treatment in 2005-2006, and AI’s (aromatase inhibitors) for the intervening period, I presented with some stomach pain last spring. Go, go to your oncologist, even if you think it’s nothing. It took them 3 months to diagnosis my mets as carcinomatosis, around my peritoneal wall, colon wall, inside my colon, in my spine. Another late diagnosis. It’s just cells. It doesn’t make a solid tumor. It never showed up on my tumor markers (blood tests) or on a CT or PET. You can’t generalize my experience. It is important to try to set standards of care which make sense to most people and are scientifically, rigorously scrutinized. I am Stage IV and in treatment again, but this time chemotherapy is the only thing in our arsenal. I am 53 now and I will die from this disease. But I do believe a cure is possible for those who follow, by concentrating on what is true and accurate information, not myths and fears, funding basic science research (it’s not superfluous), and fully funding research for Stage IV by 30%, as 30% of us will die. A number unchanged since the 1960’s, 40,000 a year in the US.

  • Sharon

    My beef with the cancer industry is that it seems to me that all the money, time and attention is given to prevention and no one seems to be concerning themselves with finding out why and how certain cancers metastasize. I agree wholeheartedly with what the article is saying. People who have found their cancers by self exam are bound to be blinkered. They feel that the method saved their lives, and it may well have done but then again, I don’t want to alarm anyone but it might not have, only time will tell. In any case, if you read again the article is not saying don’t self exam, it’s saying that self examination may not deserve the reputation it is getting from adverts and campaigns as being an almost 100 percent effective prevention tool. If you are like me, someone who found their cancer on self exam, had 8 cancer free years followed by a diagnosis of stage 4 terminal metastising cancer, self examination doesnot look like such a life saver. If there had been a better way of preventing my cancer from spreading, then my life might have been saved, as it is I’m among the group of 1000’s of women to who were always going to die from cancer because nothing was done to prevent it.

  • A breast cancer awareness campaign by the research advocacy group Susan G. Komen for the Cure overstated the gain that mammograms have on survival prices of women with breast cancer, researchers say in a new editorial.

  • Mary

    Gayle, I agree with all you have said. There is no one method that will find all breast cancer. How can we call mammography “the gold standard” when it can miss 20% of cancers, maybe more. I, at the time 60 years old, found a particularly aggressive cancer that was not found on regular mammograms since age 50. Yeah we “oldies” can have dense tissue, too. I found the second, less than two years later. That one was missed on mammogram, ultrasound and MRI. For me, and I’m sure many others, there is no good high tech detection tool. You take your chances. All this “pinking” and it is basically a roll of the dice.

To speak her truth, she needed to give her words and identity away, to a trusted poet and friend @stevedavenport breastcancerconsortium.net/ov…

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* GAYLE IN THE MEDIA *

"Seeing clearly through the pink haze" Toronto Sun

*Sad face*: Being happy does not help you live longer" New Scientist

How should we address breast cancer when norms continually change? The Guardian

Your Fun 'No Bra Day' Photos Are Overshadowing Terminal Breast Cancer Patients Broadly

Backlash against “pinkwashing” of breast cancer awareness campaigns BMJ

Breast Cancer to Rise 50 Percent by 2030? Hey, Not So Fast! Health News Review

Breast Cancer: The Flaws in the Cause iafrica.com

How to Make the Biggest Impact With Your Breast Cancer Donations Money

The Very Pink, Very Controversial Business of Breast Cancer Awareness Racked

NFL, Pink Ribbons Not Enough to Win over Women CNN

3 Questions We Need to Answer for Breast Cancer Awareness Month Chronicle of Philanthropy

The problem with National Breast Cancer Awareness Month Women's Health Magazine

Pink Ribbon Envy: Living with an Uncool Cancer The Nib

A Year After Bombings, Some Say 'Boston Strong' Has Gone Overboard NPR, All Things Considered

Canadian Mammogram Study KCRW, NPR Affiliate

Time to Debunk the Mammography Myth CNN

Breast Cancer: Awareness, Activism & Pinkwashing NPR Charlotte

Buying Pink Al Jazeera's The Stream Watch »

The Pink Backlash Orlando Sentinel

Why Jolie's Test Costs So Much CNN

Preventative Mastectomies: Disease and Deception BlogTalkRadio

Angelina Jolie and the 'Breast Cancer Gene' KCRW

Our Feel-Good War on Breast Cancer The New York Times Magazine.

The Story Behind the Pink Ribbon Campaign Sisters Talk Radio

WISH Interview Women's International Summit for Health

Making Cancer About The Patient, Not The Body Part CBS Pittsburgh

Sexy breast cancer campaigns anger many patients USA Today

The perils of pink The Daily

Komen pink campaign creates breast-cancer blues for some Dallas Morning News

A yellow flag for the NFL's pink New York Daily

Gayle Sulik named #7 in SharecareNow’s Top 10 Online Influencers in Breast Cancer

Breast cancer cancer causes so easily derailed Philly Inquirer

Komen Charity Under Microscope for Funding, Science Reuters

The Fight Against Cancer - And Abortion? Salon.com

Susan G. Komen For the Cure defunds Planned Parenthood. In Deep with Angie Coiro

Amid Breast Cancer Month, Is there Pink Fatigue? NPR's All Things Considered

How is Breast Cancer Culture Undermining Women's Health? America’s Radio News Network

Pink Ribbon Culture and Breast Cancer The Kojo Nnamdi Show

The Big Business of Breast Cancer
Marie Claire

Does Breast Cancer Awareness Month Crowd Out Other Diseases? Slate

Pink Inc. Has Many Starting to See Red The Sacramento Bee

Get Your Pink Off Ottawa Citizen

Komen Pink Ribbons Raise Green and Questions USA Today

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