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Breast Cancer: The dreaded Pink Ribbon October

anonfemphil26 Comments

You may have already seen pink ribbon events planned for October. For a number of women with breast cancer, these events are opportunities for boycotts.
Boycotts? Why in the world? One major worry arises with many charity campaigns: Where is the money really going? But there is also here another concern: a disproportionate amount of the money that is actually spent on the disease goes to awareness, not research for a cure. Treatment for breast cancer is too often brutal and primitive, with about 150,000 women (USA) with the deadly metastatic form, 40,000 of whom will die in 2011. The treatment is slash, burn and poison, and even when that seems to work, the cancer can return 20 or so years later to catch you again, too often at a later and more deadly stage.

Some quotes from a large cancer discussion board:

I got my regular flier from the HEB grocery store today. HEB is a large chain in Texas. The foldover had their bid for your pink money. All coupons will be printed in pink. If you buy two boxes of cookie mix they’ll give you a free reusable grocery bag adorned in pink ribbons…..OR……OR……you can give them $19.97 for a pink fold out chair that says “Fight like a girl” on the back……..or…..or….. you can pay $6 each for some a coffee cup or tumbler with pink ribbons all over it. AAAAAAAAYYYYYYYYYYYYYYYYYYYYYYYIIIIIIIIIIIIIIIIIIIIIIIIIIIIIII. So glad I wasn’t in the store, I hurt to much to shop right now. So I hit their web page and here’s what I told the customer relation form:

Today I received in the mail your regular flier. To my dismay I noted your Pink notice encouraging us to join the fight against Breast Cancer. No where on that flier did it indicate how you support or fund research into curing Breast Cancer. It certainly encourages me to spend money at your store.

I am currently diagnosed with Stage IV Breast Cancer and my awareness has been raised as never before. Are you aware that even Susan B Komen contributes only 19% of their funding to research while spending nearly 40% “awareness” This month myself and many other Stage IV ladies who know we will die of complications from this disease are sick of PINK.  [Stage IV is metastatic; 5-year survival rate is 15%.]

We are asking corporations to stop co-opting this deadly issue to obtain revenue from their customers while doing very little to nothing to fund the research that actually could fight this disease.

Tomorrow I am interviewing with the Austin American Statesman on this issue and I intend to use your ad to point out the frustration we cancer “survivalists” have with the nauseating PINK campaigns throughout the month of October.

Where is your funding going for Breast Cancer????? Is it really helping????

You can do better! You know you can!

——

I got my anti hormonal pill bottle from the pharmacy with a pink lid. The others are white. I think it’s supposed to make me aware of my BC.

[Explanation:  the anti-hormone routine is the mildest of the “poison” part.  A standard one’s side effects include hot flashes, blood clots, strokes and uterine cancer.  A new one is better, but in addition to hot flashes, it can cause chronic joint pain and osteoporosis.  Both types can cause hair thinning.  Each is taken once a day for five years.]

——

I had to stop and chime in as i too dread Pink month..My 1st dx [diagnosis] was in Oct. of 2002 i recall scheduling surgery while this nice well meanin receptionist decided to load me down with all this FREE pink ribbon crap Pens pins etc…I bein naive actually asked whats all the pink ribbons for she said oh sweety its for breast cancer awareness month..My sister was quite horrified as i nicely pushed all this crap back from me and stated breast cancer awareness can kiss my a** as im very aware at this moment.. Thank you very much…since that very day i dread October comin as i know the ribbons will be back everywhere and over the years since i onced looked onto some of it but it seemed most went to pink ribbons or simply people couldnt tell me where it truly went…

—-

I have a relatively popular blog.  In fact, last time I called a company on their pinkwashing, they had to shut down.

I put right in the media section that I don’t support any awareness activities, only research.

Yet, I am being inundated with requests to promote pink products.  Somebody has a butter bell, somebody has a piece of jewely they designed, somebody else has pink Brillo pads.

I’m going to creating a big wall of shame.

I write them all back, saying that it’s disgusting that they are trying to profit off the backs of suffering women and donate money to groups that don’t help with anything that helps the only folks who die of breast cancer – us.

And, that I will certainly mention their product on my blog – in my Hall of Shame. 

That scares some people.  Wait until that blog post comes out.

This is an important topic.  Opposing views are welcome.

26 thoughts on “Breast Cancer: The dreaded Pink Ribbon October”

  1. I’ve been railing about this for years, as have many of y’all. The last straw, for me, was getting on a Delta flight last October and seeing the flight attendants wearing as many pink accessories as they could think of. Because, you know, that makes breast cancer go away.

  2. My breast cancer was discovered accidentally. I had a “clean” mammogram on May 31 of last year (2007). I ran the Casper Marathon on June 8, 2007. I was feeling myself all over the next day, thinking “Ow, everything still hurts,” when I found a very small lump the size of a green pea in my left breast nearly under my arm. I immediately made an appointment with my physician, who decided to watch it a couple of months to see if it would go away on its own. When it was still present on July 23, we agreed I should have a diagnostic mammogram. Upon reading the mammogram, the radiologist said, “I can’t see anything”… not anything as in “no cancer” but as in “diddlysquat…your breasts are too dense to read.” She said I needed an ultrasound, which I then had and which clearly indicated on the screen, even to me, that something different was present. I returned two days later for a fine core biopsy and a research MRI for a clinical study. Results from the biopsy and the MRI indicated the presence of cancer. This experience has totally demolished my confidence in mammograms. I feel as though I have been brainwashed by the flood of propaganda about getting my yearly mammograms (which I have done every year for the past 19 years). This cancer had been present for an estimated five to six years, yet no mammogram or yearly physician’s exam had detected it. My yearly mammogram report always said something to the effect that I have dense breasts that make the mammograms more difficult to interpret….but nowhere or at any time was I ever told that the physician could not see “anything” as in “diddlysquat,” and that to be safe, I should have an MRI. My physician says that the insurance will not pay for such MRIs and that is why doctors don’t recommend them.
    Jym Leonhard
    Buy vicodin

  3. The 2009-2010 annual report for the Susan G. Komen foundation (available at their website) states that they spent 24% of their annual revenue on research, 34% on education, 15% on screening and 7% on treatment. Administrative overhead, including fundraising, was right at 20% (which is not bad for an organization of that size). It’s my understanding that early detection of breast cancer improves one’s prognosis. Granted, early detection may involve more than mammography, especially for women under 40, for whom the breast tissue is still very dense (as noted in the comment above). However, if education and screening play a role in early detection, and early detection improves one’s prognosis, then it seems that there is some justification for spending money in these areas. Also, it seems that a good percentage of the community outreach sponsored by Komen involves providing access to healthcare for both a.) local groups of underserved women (specifically African-American women, who have a breast cancer mortality rate 62% higher than white women); and b.) underserved women in 50 different countries, some of whom suffer tremendous obstacles to cancer screening and treatment. (It seems that women in other countries aren’t quite as inundated with “pink” as women in the developed world.) It would be nice to see some numbers on how effective these community health programs are and how they’re measuring efficacy. I am sure that information is available because granting entities are required to make public reports, but I don’t have time at the moment to track it down. However, without knowing for sure how effective the local and global community outreach programs have been, I am still inclined to say that these activities, while not focused exclusively on finding a cure, are worthwhile endeavors.

  4. Thanks for raising this issue, which I don’t know much about. If you know of any articles that lay out the basics of this stuff, I’d be very grateful!

  5. Pink football has always bugged me. I wondered outloud to my husband a couple years ago ‘how much do they spend on all this special pink equipment?’ and couldn’t it go directly towards research, or treatment?? Breast cancer awareness has ruined the color pink.

  6. I am aware that some funds raised for breast cance research are used unwisly. That is not right. however there are local groups, here on Long island where I live that spend a low 15% or less on administration, the rest being spent for the benifit of the folks, and yes men get it too, who have breast cancer.
    Please dont paint with so broad a brush. yes I hate the everything pink month too, but when I see a young man on a bike stop to put a few bucks in a pink can, well I guess its worth it. at least here for local groups.

  8. Jym, I’m so sorry to hear about your experience, which is certainly close to mine. I went to a very major cancer center for the second diagnosis and they bragged that their mammograms were really as good as an MRI. But their fine and thorough mammogram, followed by well over an hour of ultrasound, missed half of what the MRI found.

  9. There is an article that gives the argument that there is too much stress on simply finding tumors. It’s copywritten and I can’t reproduce the whole thing, so I’ll make some general comments and then turn to the article and quotes from it.

    It can seem hard to argue with the idea that early detection makes it easier to treat the cancer, and so early detection should be promoted vigorously. The problem arises, however, when you haven’t done the research to refine the detecting apparatus or the treatment protocols. One kind of problem, which the article I’ll mention alludes to, is dcis or ductal carcinoma in situ. First of all, mammograms can miss it, but it is one of the more easily detected cancers. The trouble is that as long as it is “in situ” it is not invasive and will not cause problems. Some of it will, however, become invasive; the last estimate I hear was that 50% will not become invasive. But since we don’t know what iis a good marker of future invasion, all are treated as though they can kill you. And the treatment is slash/burn/poison. Unless it is very small, you’ll be pressured to have a mastectomy, followed by five years of hormone therapy and, if the tumor is close to the chest wall, or there aren’t clear margins about it, radiation. And if you have a lumpectomy, again you’ll have radiation. And the radiation isn’t really a good thing. If it’s on the left side, it can damage the heart. The latest technique is to have patients inhale and hold so you get the breast without the heart. And it’s going to get some of the lung on any side, possibly weaken your ribs, so that a fall results in cracked ribs, and so on. Finally, the radiation leaves some women with weeks of deadly fatigue. You also may well have lymph notes “resectioned” and the risk here is lymphocema, which causes the arm on the side being treated to swell us, become more difficult to use, etc.

    There has been one advance in the hormone therapy that is part of the “poison” segment in the last 10 or 20 years. But you take it for 5 years, during which it can thin your hair, cause signigicant joint pain and osteoporosis.

    Remember that so far we’re talking early breat cancer perhaps 50% do not need treatment at all. I’m slightly beyond the first stage, with microinvasive carcinoma. I do feel pretty pissed that the treatment feels like something much more appropriate to witches in the Middle Ages or rather, given there weren’t any real witches, women with breast cancer are treated as though they were witches. Of course, move much further on from me and you get chemotherapy and we are talking poison indeed.

    Secondly, people without good health insurance are not always getting some of the procedures needed. One of these is the very expensive MRI, which gives much more information about grade and location. A second is modified IMRT (intensity modulated radio therapy). Before you receive radition, you go through a simulation with ct scans to see how the radiation bean(s) should be placed. Since the breast is connical in shape, if you were to match radition intensity to the breast shape, you’d have a fiercely complication amount of calculations to do and an exceptionally sophisticated machine to produce such modulated distribution. It takes about a week of a very expensive highly trained team of people to do it, and it doubles the cost of the therapy. But it has a much better trackrecord of, e.g., not creating hot spots in breasts, of not having your skin come close to dissolving, etc.

    Thirdly, the cost of screening everyone is huge. It is very easy to feel that huge amounts are being spent on awareness and on screening, and we are in the pits as far as what happens afterwards/

    To here is the article I mentioned:
    Title: The Mammogram Melee.
    Authors: Park, Alice
    Pickert, Kate
    Source: Time; 12/7/2009, Vol. 174 Issue 22, p40-42, 3p,

    The whole thing is worth reading, but this seems to me to catch very important parts:

    The Limits of Screening

    A decade ago, doctors saw breast cancer as a monolithic disease that always progressed the same way, beginning with a single mutant cell that continued to divide and spread to the rest of the body. At the time, screening all women made sense, especially since annual mammograms had reduced deaths from breast cancer 3% each year since 1990. But as Dr. Russell Harris, a professor of medicine at the University of North Carolina at Chapel Hill and a member of the task force, points out, breast cancer occurs less frequently in younger women, and not every cancer is the same. Some tumors are indolent and slow-growing; others are aggressively malignant and blanket a body within months. Mammography is best at spotting the slowest-growing tumors, which are most common and generally do not spread beyond the breast or require treatment. Although these tumors are malignant, they rarely go on to cause clinical symptoms. But when detected, they are still treated as if they were potentially faster-growing–with a combination of chemotherapy, radiation, surgery and hormone therapy. “We can’t figure out which is which,” says Harris. “So we end up having to treat them all.”

    It’s impossible to say how frequently such “overdiagnosis” occurs, according to the task force, but the data did conclusively show that in order to save the life of one woman in her 40s from breast cancer, 1,904 women would have to be screened every year for up to 20 years. Because it judged that the risks of harm from annual screening outweighed the benefits, the panel issued its controversial recommendation that most women ages 40 to 49 need not get routine mammograms. “We felt that women would be better served if they understood the trade-off between the benefits, harms and risks of starting at 40 or waiting a few years into their 50s,” says Petitti.

    That calculus is precisely what drives comparative-effectiveness research, a strategy embraced by both the House and Senate health care reform bills: figuring out which tests and treatments work best–instead of using every available treatment just because it’s there–while saving money without adversely affecting health. Using magnetic resonance imaging (MRI) to screen for breast cancer, for example, isn’t necessary for the vast majority of women who are at low risk of the disease; because most tumors are not aggressive, most women will not benefit from finding the first signs of tiny tumors that an MRI can detect.

    Both bills in Congress would set up new institutes to organize and fund more comparative-effectiveness research, ostensibly to help guide health care policy. (The $787 billion American Recovery and Reinvestment Act of 2009 has already authorized $1.1 billion for the field.) And yet as Diana Buist, a researcher at Group Health in Seattle who received some of the stimulus funding, says, “[Comparative-effectiveness research is] a hard sell. It always has been.” According to a 2007 Congressional Budget Office (CBO) report on the topic, “Some experts believed that less than half of all medical care is based on or supported by adequate evidence about its effectiveness.” Instead, said the CBO, health care in the U.S. is often motivated by factors like “enthusiasm for the newest technology” and a fee-for-service payment system that rewards doctors based not on outcomes but the number and price of treatments they prescribe and perform.

    The status quo won’t be easy to change, largely because evidence-based medicine often runs counter to our personal understanding of risk. It’s intuitively difficult for a woman in her 40s to stop getting annual mammograms when she is fully aware that they could save her life. Feeding this instinct is the relentless effort on the part of doctors and disease advocacy groups to promote preventive-health behaviors. Many feel the push may have done the public a disservice by instilling the belief that screenings are purely beneficial. “We have not rounded out that discussion with the American public about the harms,” says Dr. Therese Bevers, a professor of clinical cancer prevention at M.D. Anderson Cancer Center in Houston.

    Even doctors are not always mindful of the risks of overscreening. Busy physicians often prescribe routine screening as a substitute for in-depth discussions with patients about their individual risk of developing cancer and the relative benefit a yearly mammography would offer. “These are hard conversations,” says Dr. Eric Winer, director of breast oncology at the Dana-Farber Cancer Institute and chief scientific adviser to Susan G. Komen for the Cure. “So it’s easier to tell women to get a mammogram beginning at age 40. But simple isn’t always what’s best.”

    The Calculus of Risk

    So is there any way to reconcile the weight of evidence about screening with patients’ natural impulse to take every available precaution? Science may ultimately provide a way out. A better understanding of what triggers abnormal growth of breast tissue, for example, would lead to more effective and targeted therapies, rather than the treat-one-treat-all approach in place today. Current screening can pick up only suspicious growths; smarter technology could help doctors know exactly what to do with them. “The goal is not finding cancer; the goal is reducing death and suffering,” says Dr. Lisa Schwartz, a professor of medicine at the Dartmouth Institute for Health Policy and Clinical Practice.
    In the future, that may help reduce the risks to women from screening, says Dr. Stephen Taplin, program director for the Breast Cancer Surveillance Consortium at the National Cancer Institute, which is reviewing its guidelines that now advise biennial mammography for women in their 40s. But that will also require women to come to grips with the full range of risks associated with being proactive. Taplin says the oft-cited statistic that 1 in 8 women will eventually develop breast cancer requires doctors and patients to be vigilant but judicious about using mammography. Says Taplin: “We need to think about the seven who don’t get breast cancer as well as the one who will.”

  11. Jender, yes!
    I am not, of course, an expect on this situation, just a pissed-off consumer. I think a point worth stressing that both sides need to take account of is that our media-influence common sense may not be a great deal of help in getting to better or best policies.

  12. The solution, if there is one, seems to be having a doctor who knows you and who
    knowing how healthcare really works, is on your side.

    It’s utopian to imagine that everyone can have a specialist for every possible disorder who knows you, but having a family doctor who keeps up on the literature on common diseases, such as breast cancer, would be ideal, albeit not always possible.

    I had a good doctor. He died.

    Then another, but she went up-market, abandoning all her middle class patients, since our insurance did not pay her enough.

  14. I just happened to click on this link, which a friend posted on her wall.

    Honestly, this is exactly why I stopped reading this blog. I read the blog for about a year, but stopped because I felt that most of this blog is a bunch of petty complaining and hurt the issues due to unbalanced assessments.

    With this issue, it’s good that you’re making sure that charities and corporations are honest. (Something that’s not only important for breast cancer research.) But what about the other questions that need to be asked? How has this campaign changed the perception of cancer in the eyes of the public? Are men and women less afraid now when they find symptoms? Do they now know what to do? Do they feel like they have support? Do people feel more likely to donate to charities involving cancer research? Would they more likely support legislation or funding initiatives for cancer research? If there are positive answers to any of this, I think that is a win for the campaign.

    These big public movements often dilute messages and do not stay as efficient as smaller enterprises. But they also garner massive support. So a grass-roots organization can dedicate 80% of their money to directly helping, but that 80% probably pales in comparison to the 50% of a massive movement like this, or maybe even a smaller percentage of huge campaigns.

    In my experience, these movements help more than they hurt. I guess the point that’s relevant here is that we should also be very careful with how and why we’re complaining, so as not to come off as someone as merely pissed off without a reason. And that includes entertaining what these campaigns really do well, not just what they do poorly.

    And for FemPhil blog, if they really want to focus a blog on feminism and philosophy, they should be more even-handed in their assessments, and less vent-y. It’s good to have an online community to vent to. But then you must also acknowledge that that’s what you’re doing here. And for a blog that spends so much time on awareness, it’s coming down pretty hard on a campaign whose major focus is awareness. Pot calling the kettle black?

  15. A concerned philosopher, you think this is “petty complaining”?

    Here’s another view of the issue I was describing, from the NY Times last year:

    The pink ribbon has been a spectacular success in terms of bringing recognition and funding to the breast cancer cause. But now there is a growing impatience about what some critics have termed “pink ribbon culture.” Medical sociologist Gayle A. Sulik, author of the new book “Pink Ribbon Blues: How Breast Cancer Culture Undermines Women’s Health” (Oxford University Press), calls it “the rise of pink October.”

    “Pink ribbon paraphernalia saturate shopping malls, billboards, magazines, television and other entertainment venues,” she writes on her Web site. “The pervasiveness of the pink ribbon campaign leads many people to believe that the fight against breast cancer is progressing, when in truth it’s barely begun.”

    The National Breast Cancer Coalition, a highly visible activist group based in Washington, D.C., has also taken a swipe at pink culture as it tries to reconfigure breast cancer activism through a highly ambitious plan to eradicate the disease by 2020. “Peel back the pink,” the group urges its advocates, “and go beyond awareness into action to end breast cancer.”
    …
    So how can the pink ribbon be objectionable? Among the first salvos against the pink ribbon was a 2001 article in Harper’s magazine entitled “Welcome to Cancerland,” written by the well-known feminist author Barbara Ehrenreich. Herself a breast cancer patient, Ms. Ehrenreich delivered a scathing attack on the kitsch and sentimentality that she believed pervaded breast cancer activism.

    Others added to Ms. Ehrenreich’s arguments, notably the San Francisco-based group Breast Cancer Action, which in 2002 initiated a “Think Before You Pink” campaign. The organization’s main concern was that pharmaceutical companies that manufactured breast cancer treatments, plus other industries that promoted the pink ribbon for publicity purposes, produced toxic waste that poisoned the earth — and actually promoted breast cancer. Rather than being used to study the causes of breast cancer and how to prevent the disease, a large proportion of pink money, the group argued, has been used to pay for local screening and treatment programs and research into new, expensive biological agents that have had little impact on women’s survival from breast cancer.

    The head of the National Breast Cancer Coalition, Fran Visco, in a recent e-mail to her membership, called for a “solution,” such as the development of a breast cancer vaccine, rather than just more hope. “We have to stop celebrating breast cancer awareness months and begin pushing for the end,” she wrote.

    In “Pink Ribbon Blues,” Ms. Sulik offers three main objections to the pink ribbon. First, she worries that pink ribbon campaigns impose a model of optimism and uplift on women with breast cancer, although many such women actually feel cynicism, anger and similar emotions.

    And like Ms. Ehrenreich, Ms. Sulik worries that the color pink reinforces stereotypical notions of gender — for example, that recovery from breast cancer necessarily entails having breast reconstruction, wearing makeup and “restoring the feminine body.” …

    At least the petty complaining puts us in good company.

    Do note, however, that the post quite explicitly described itself as presenting one view. Opposimg views were clearly invited.

  16. For anyone following this, let me add that it was in reading the ny times piece that I understood the immense pressure I was put under to have a mastectomy for cosmetic reasons from my breast surgeon and plastic surgeon. The point was the following reconstruction.

    We are not just talking about getting flooded with literature. We’re talking about a surgeon exploding with anger, turning his back and addressing you over his shoulder. Or your breast surgeon bursting into laughter and saying she’d have to tell her surgery attendant when you say you are haappy with the results. And being referred to a psych consult for wanting the lumpectomy.

    By that time, I have seen enough pictures of surgery like mine to have a fair idea of what I was choosing, a lot of people were saying they were happy with the same sort of result. And I was completely perplexed by a very large cancer hospital not tolerating letting a women not wanting implants to hide her loss.

    But it all makes sense seen in terms of an ethos of ‘the feminine’.

  17. In light of Concerned Philosopher’s comment that we “must also acknowledge that [venting to an online community] is what you’re doing here,” I acknowledge that of the many things our contributors do, one is this. I’m not clear as to why we must acknowledge something so obvious, but consider it acknowledged.

    I disagree that criticizing something in a polemic, non-even-handed way comes off as petty complaining and unreasoned, but to each his/her own. At the least, though, I wish to recognize anonfemphil’s contributions to this blog, from the point of view of a person with an ongoing battle with cancer, as neither petty nor complaint without reason. anonfemphil, you have my thanks on behalf of many of us who appreciate your regular engagement as a woman with cancer, as a philosopher, and as a feminist.

  19. I like the Fem Phil Blog just as it is. Thank you to that community. Thank you also to anonfemphil, for sharing a careful perspective, based on first person experience, and for inviting the expression of opposing views. It would be lovely if such views were expressed in a way that was consistent with the spirit of the ‘be nice’ policy.

  20. I have found anonfemphil’s comments very helpful. I guess there’s part of me that always wants to see the other side. And if it’s not there, I feel like dogmatism is very nearby, or as though we’re doing the same thing to others that we don’t want done to ourselves.

    Thank you for the further reading materials and responses. Though, they do in fact make many of my questions very relevant.

    P.S. – Apologies for any harshness on my part. More than anything, it was an attack at the rhetorical part of of this blog, not necessarily the issues. Rhetoric matters, even in philosophy.

  21. …and I would imagine that Concerned would add, even in blogging! Especially philosophy-blogging.

    I shall try not to get too meta here, but wish to note briefly that indeed dogmatism is a potential side-effect of polemics. Since feminism is often pejoratively described as a politic “versus” a philosophical approach, we are regularly called upon to justify value-laden and perspectival approaches. Sometimes I find this a diversion of energy better spent on work like anonfemphil’s, but most of the time, I believe that attentiveness to the perils of dogmatism is worth the extra effort. This is a wordy way of saying that Concerned’s postscript is a reminder of shared values.

  22. Profbigk, well said, I think. Still, it’s worth noting that blogs are not philosophy journals.

  24. Profbigk, I meant just to point out that, not being journals, blogs can be less considered and more polemical.

  26. We see pink ribbons on yogurt lids, diaper bags, tampon boxes, cereal, on the backs of cars, on the jerseys of football players, and many more places. The ribbons are everywhere. It’s marketing for the company selling products and cancer awareness. Yes, there are donations from corporations, but 1-5% of a sale is not a whole lot to get excited about and does not support the cause as much as we would like. Other times, corporate donation has a cap, or is a preset sum, independent of how many items are sold. Yes, a small donation is better than none, but cancer is being used as a marketing tool. Is that sick, or what?

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