Learning from breast cancer

By Felix Salmon
April 30, 2013

Over the weekend one of my friends took to Facebook to ask a very good question. Her four-year-old daughter was going to run a lemonade stand, and my friend wanted suggestions “to incorporate an element of giving into the project”. Which charity should the daughter start supporting with her lemonade-stand profits? There were some very good answers, but there was also one woman who suggested, of all things, breast cancer research.

The Facebook post appeared at roughly the same time as Peggy Orenstein’s excellent 6,600-word NYT Magazine cover story on the problems with the breast cancer industry. Orenstein concludes:

It has been four decades since the former first lady Betty Ford went public with her breast-cancer diagnosis, shattering the stigma of the disease. It has been three decades since the founding of Komen. Two decades since the introduction of the pink ribbon. Yet all that well-meaning awareness has ultimately made women less conscious of the facts: obscuring the limits of screening, conflating risk with disease, compromising our decisions about health care, celebrating “cancer survivors” who may have never required treating. And ultimately, it has come at the expense of those whose lives are most at risk.

There are broader lessons to be learned from what we’re seeing in the world of breast cancer.

Firstly, Americans are bad at statistics. When it comes to breast cancer, they massively overestimate the probability that early diagnosis and treatment will lead to a cure, while they also massively underestimate the probability that an undetected cancer will turn out to be harmless. They’re bad at pathology: they’re easily convinced that something called ductal carcinoma in situ (DCIS) is a form of cancer, for instance, partly because the cancer industry insists on referring to it as “Stage Zero” cancer. They’re bad at biology: they think that it’s physics, basically, and that cancers are discrete, localized growths which start small and get bigger, and that the earlier you find and treat them, in large part by physically cutting them out of the body, the more likely you are to be cured.

But bigger than all of these is the fact that Americans are loving, compassionate people who really want to think that they can help, or make a difference. So they wear pink t-shirts, and ribbons, and football cleats; they spread the word in the name of “awareness”; they file up in their millions for mammograms and encourage everybody else to do so as well. (“If you haven’t had a mammogram, you need more than your breasts examined.”)

Orenstein does a good job of glossing the unpleasant consequences of such actions. Money which could be put to research into treating metastatic cancer — the kind of cancer which kills you — is instead put overwhelmingly into “awareness” campaigns and mammograms. There’s an epidemic of overtreatment, which carries massive physical, psychological, and economic costs. (And even attempting to measure such costs is considered almost treasonous in the cancer community.) More recently, the pink wave has spread to teenage girls, who are being educated, as Orenstein says, “to be aware of their breasts as precancerous organs”.

When a loved one dies of breast cancer, we all want to feel that there’s something we can do, some way we can help, some possibility that might prevent other people going through the same thing. The urge which causes people to donate to the Red Cross when there’s a big natural disaster? Is very similar to the urge which causes people to donate to the Susan G Komen Foundation when they have a nasty run-in with breast cancer.

But there are much better places to send your money than Komen. In a follow-up blog post, Orenstein points to Breast Cancer Action as one of them. It doesn’t have the feel-good aura that Komen does, and it’s unabashedly political. But it’s passionate, it’s reality-based, it doesn’t hide the people who are dying of breast cancer, and it doesn’t pretend that we have a way of stopping that from happening.

There are lots of reasons why people give to charity, and there are lots of reasons why some charities grow into Komen-sized behemoths while others stay small. But scientists and policymakers shouldn’t give especial weight to big charities just because they’re big, and physicians shouldn’t fall into line behind the cancer industry’s talking points unless those talking points have a solid scientific basis.

More generally, it behooves all of us to be a bit more critical of our intuitions. The Komen Foundation has become a spectacular success by playing to Americans’ fallacious intuitions, rather than trying to gently correct them. That’s depressing. Especially when so many lives are at stake.

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Comments
13 comments so far

Hi, this is Andrea Rader at Komen and I just want to weigh in here since it’s clear that there’s misunderstanding. Death rates from breast cancer have dropped by 33 percent since 1990 in the U.S., largely the result of research funded by Komen and others since our founding in 1982 ($755 million to date – the largest breast cancer research of any nonprofit). And people also need to know of the programs that are being funded by Komen in communities nationwide – paying for insurance co-pays, surgeries, wigs, prosthetics, groceries, living expenses and, yes, screenings. We helped 100,000 women with financial or psychosocial support last year, we paid for hundreds of thousands of screenings for uninsured and poor women, and we educated millions through out website and other outreach. We could do more. Women in the U.S. are still showing up for treatment too late to help them, mostly because they can’t or are afraid to access the healthcare system. We want every woman and man, especially the uninsured or poor, to know that Komen Affiliates can help them today while we fund the research that’s responsible for so many advances so far, with more to come. Thanks.

Posted by andreardr | Report as abusive

Well you say that Andrea…but death rates from all kinds of cancers have dropped substantially since then. Medical technology has been improving like crazy completely apart from anything your organization has done. You don’t get to just take all the progress that has been made and slap your stamp on it.

Posted by QCIC | Report as abusive

To andreadr, from Orenstein: “There has been about a 25 percent drop in breast-cancer death rates since 1990, and some researchers argue that treatment — not mammograms — may be chiefly responsible for that decline. They point to a study of three pairs of European countries with similar health care services and levels of risk: In each pair, mammograms were introduced in one country 10 to 15 years earlier than in the other. Yet the mortality data are virtually identical.”

And yet Komen maintains that “Women are showing up too late to help.” No, it seems that the disease is crafty, and the kind that kills you might be different than the kind that shows up in the screening.

Posted by Newalgier | Report as abusive

The other lurking variable is the fact that if you work like crazy to make sure that more and more slow growing, even non-lethal cancers are being detected and treated, and then reporting them as if they constitute the same disease as much more lethal cancers it’s going to look like there is a falling death rate, when in fact, the lethal kind of cancer is as lethal now as it has ever been. The truth is probably somewhere in between, but it’s closer to what I just described than what Ms. Rader claimed. Everyone knows someone who was zealous about getting mammograms and still died from breast cancer.

Breast cancer is BIG BUSINESS — for charities like Komen and for lots of radiologists and manufacturers of imaging equipment. (Just FYI, these manufacturers are especially concerned because Congress has made imaging reimbursement contingent on higher and higher rates of utilization of imaging equipment — fewer mammograms makes it much harder to recapture the cost and profit from the purchase of new imaging equipment.)

Posted by rb6 | Report as abusive

P.S. — if there is a reduction in the death rates associated with stage 2-3 breast cancer it is far more likely to be attributable to newer drugs (Tamoxifen and others) rather than to annual mammograms.

Posted by rb6 | Report as abusive

Peggy’s article quoted all the relevant statistics. In my opinion, she presented a fair and balanced representation of the big business of breast cancer. It is no longer a disease. Today, it is the “Poster Child of all Cause Marketing and the Bully of All Cancers” and it’s truly a disgrace.

I am a breast cancer patient, I am six years post treatment. I can hear “Yay, you passed the five year mark” and I want to scream. Why? My mom is a 2 x breast cancer patient. She was diagnosed with her first primary in 1987. After my diagnosis of an invasive cancer, my mom was diagnosed with a second primary in 2007.

Today, she is metastatic. Terminal. It is likely from the cancer in 1987. In other words, her cancer spread to a bone despite full mastectomy, chemotherapy and hormonal treatment. TWENTY FIVE YEARS …..

First.. I think we are aware. Second…. I think that ribbon has created what I like to call the illusion of progress. Third….. I know there has been very little MEANINGFUL progress in research. We have perfected surgical techniques, we have found kinder, gentler ways of administering chemotherapy but we are still amputating body parts and infusing toxins into our bodies in the name of a CURE. My treatment in 2006 was nearly identical to my mom’s treatment in 1987. Same surgery, better plastic surgery options. SAME chemo drugs (which have affected my brain), I had the benefit of an IV drip while my mom’s were “pushed” ….. Where in any of that do you see meaningful progress? My mom was on tamoxifen for over 7 years after the first cancer and she was still on its post menopausal equivalent when her cancer spread.

There is no cure and there is no prevention and the same number of women WILL die this year as did when my mom was first diagnosed. Why is that? The patients who are living with Stage IV disease are an inconvenience. They taint the message of hope that is being pushed by so many. Their lives are being sacrificed. They are largely written off and I challenge anyone to show me how this is not true.

I volunteer with a number of organizations and I hope that Peggy’s article sparks a conversation wherein ALL of the money being donated to all breast cancer organizations is scrutinized. The underserved should be helped. The survivors are not unscathed and where possible, they should be helped, too. Mostly, we should be looking to save lives. Awareness? I can’t think of a more wasteful use of donor dollars. We ARE AWARE. WE all know about mammography.

Frankly, to invest such a disproportionate amount of funds trying to convince women to come in for mammography….. women who are too scared or whatever nonsense is being bantered around….. to be completely crass…. I apply the seat belt analogy. They are CHOOSING to not buckle up. Yes, there should be outreach. But, there are other women who are scared, too. And they did everything according to the plan. Screening, check ups, follow ups and they are dying. How about we listen to the women begging for their lives and send a little more funding in their direction?

Posted by AnneMarieC | Report as abusive

I’m not shocked that a Komen representative- once again- misrepresented the facts. The truth of the matter is the breast cancer death rate has barely dropped in the past 30 years since the inception of Komen and anybody who wants t check that can do so on SEER. What drop there has been is attributable to new advances in treatment, such as herceptin.

What has increased is the diagnosis of forms of “cancer” (DCIS) that could never kill a woman, so naturally, that will skew the stats towards Komen’s early detection ideology. They include this non-cancer in their own statistics.

As the woman with metastatic cancer whom Peggy interviewed and quoted for her article, I am eager to let people know that Komen lies about these stats for their own purposes. Not only that, but they do a piss-poor job at anything but throwing a pink party. I’ve personally received help from the American Cancer Society and other charities but I don’t fit into Komen’s demo as a “survivor” and they completely ignore me, as well as other women with mets. To Komen, we don’t exist, as we belie the idea that early detection is the way to a cure.

You are right, Mr. Salman, when you say Americans don’t understand statistics and Komen uses that to their advantage. 1 in 8 women will not be diagnosed with breast cancer – that is a lifetime statistic. If eight 90 year olds are sitting around a nursing home, seven of them will have never had breast cancer. If 258 40 year olds are sitting in a conference room, one of them will have had breast cancer. It is neither as prevalent as Komen makes it seem nor is it the pretty pink reason for parties, fun runs, and products with pink labels.

The only valid reason for giving to a cancer charity would be research to cure the disease. Komen does an incredibly bad job at doing that, giving just a few percentage of their many millions in research where other charities give 100%. And, they give very little to patient support, despite what the Komen representative, speaking the party line, says. Their focus is on early detection and awareness and as Peggy pointed out, their focus may well be the wrong one for our times. Awareness? We are aware. Now we need a cure.

Speaking as a woman who is going to die of breast cancer, I would never give a penny to Komen. As I said in the article, they don’t represent me, and they don’t represent any of the ONLY people who are going to die of breast cancer, and that is those of us with metastatic disease.

Truly, they are disgrace, and Susan G. Komen, also with mets, would be sickened by what the organization created in her name has become. Nancy Brinker, overly plastic-surgerized and flying around on corporate jets, is not the face of any kind of breast cancer charity, nor are her successors.

I suggest, Ms. Rader, you stop drinking the kool-aide, do some research and then maybe actually join an organization that does good in the world of cancer. Komen is not it.

Posted by ButDocIHatePink | Report as abusive

“Firstly, Americans are bad at statistics… They’re bad at pathology: they’re easily convinced that something called ductal carcinoma in situ (DCIS) is a form of cancer, for instance, partly because the cancer industry insists on referring to it as “Stage Zero” cancer. They’re bad at biology: they think that it’s physics, basically, and that cancers are discrete, localized growths which start small and get bigger, and that the earlier you find and treat them, in large part by physically cutting them out of the body, the more likely you are to be cured.”

Perhaps the American people think those things because of the unrelenting Public service ads for early detection?
I just retired from the FDA, and the hallway in our office had public service ads posted from the 50′s through the 70′s about the need for early cancer detection.

Now, I don’t believe it was a conspricy by the cancer “industry” to have useless tests done. It was something much more pernacious – well meaning people indoctrinated with simple well meaning ideas. Combine that with a strain of American anti intellectualism and a “can do” spirit, and you get a lot of counter productive policy.

Posted by fresnodanhome | Report as abusive

rb6-

Exactly. If in 1980 the average woman lived 2 years after getting breast cancer but it was typically discovered when she was 50, but today she lives 12 years but it is discovered when she was 40 there has not been actual progress.

Now the numbers are not that bad, but it is an extremely important effect to take into account. And that is not even getting into the over-treatment it leads to in people whose cancers were not going to lead to their death.

There are dozens of “cancers” in each and every person’s body and if we lived to 200 everyone would be riddled with them. But typically something else gets us first. If you just started screening and fighting all of them there would be a huge amount of resources spent and little improvement in outcomes.

Posted by QCIC | Report as abusive

Fact: 15-20% of breast cancers are a category that are hormone receptor negative and
Her2 negative. Fact: These are very aggressive and appear in younger women and women of color at a slightly higher frequency. Fact: There is Not a targeted treatment
for this group of breast cancers. Fact: Triple Negative Breast Cancer is not given the media attention —- deserved. Physcians who counsel patients to “wait and see” and
re-mammogram changes that are seen on mammograms (6 months) can and do contribute to the extent of a patient’s cancer when diagnosed. Fact: Many primary care providers do NoT know that this “20% of breast cancer diagnosis” exists.
Are 15-20% of TNBC patients really disposable; because “providers” don’t recognize that the characteristics of TNBC and hormone positive breast cancers present differently on mammograms and ultrasounds? Who is advocating for the 20% ??????
I am a female physician diagnosed with invasive TNBC.

Posted by drverite | Report as abusive

The co-opting of the women’s health initiatives to understand breast cancer was pointed out more than ten years ago by Barbara Ehrenreich in a book about her own experience. We moved from critical examination of health care, environmental issues, etc., to the meaningless wearing of pink ribbons. On Long Island, the One in Nine group successfully lobbied for funds to investigate what appeared to be a breast cancer cluster, but inconculsive results seem to have diverted this effort as well.

Posted by vintagewine | Report as abusive

I can only hope that the discussion that Peggy Orenstein’s article ignited lasts throughout the spring and summer and into Pinktober. BRAVO. I cannot begin to address all the intelligent comments here, but I will acknowledge that it’s hardly surprising that Komen has made a statement.

One tactic that hasn’t been published anywhere is the fact that people affiliated with Komen (including board members and even Eric Brinker) have attempted to silence people who publicly speak out against them. This has happened to a number of people I know on Facebook (as few people have pseudonyms). Not sure what you’d call it when you find a bunch of Komen people looking at your LinkedIn profile, but I’d call it harassment. Or bullying. (And lack of social media experience for not changing their privacy settings before snooping, but it’s still completely wrong).

And as long as Ms. Rader has chimed in about how “helpful” Komen is to women going through the hell that is BC, there are COUNTLESS stories (blogs, articles, etc.) of women who reached out to Komen for help and WERE TURNED AWAY. No one expects an organization to help everyone, but for goodness sake, stop bragging about everyone you help when others are left drowning in medical bills or without insurance. And if you think THAT is appalling …

People would also like to understand how Nancy Brinker could receive a 64% salary increase after she was pressured to step down as CEO after the damage caused by the Planned Parenthood debacle. IN WHAT PINK WORLD DOES THIS HAPPEN?!? Not to mention, Komen is a NON-PROFIT. If research (and specifically, metastatic research) was properly funded, I don’t think anyone would care how much Brinker made, even with her missteps. But according to Komen’s very own financials that were recently released, research funding dropped from 29% of revenues in 2008-09 to 15% in 2011-12.

GAME ON, KOMEN! You want “awareness”? Just wait until someone comes up with a campaign and ads to inform all of your supporters about how their money is REALLY being spent. Shame on you!

Posted by Blonde.Ambition | Report as abusive

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Posted by caiencer89 | Report as abusive
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