Friday, April 26, 2013

4/26/13 Our Feel Good War on Breast Cancer

Great discussion of why I cringe at the pink Komen ribbon and have actually put products back on the shelf when I see them bearing it.

Don't want to read a nine page article? Here's the skimmer's version, all directly quoted except for bracketed material, emphasis mine in B, U, and I :

Breast cancer . . . . does not always behave in a uniform way. It’s not even one disease. There are at least four genetically distinct breast cancers. They may have different causes and definitely respond differently to treatment. Two related subtypes, luminal A and luminal B, involve tumors that feed on estrogen; they may respond to a five-year course of pills like tamoxifen or aromatase inhibitors, which block cells’ access to that hormone or reduce its levels. In addition, a third type of cancer, called HER2-positive, produces too much of a protein called human epidermal growth factor receptor 2; it may be treatable with a targeted immunotherapy called Herceptin. The final type, basal-like cancer (often called “triple negative” because its growth is not fueled by the most common biomarkers for breast cancer — estrogen, progesterone and HER2), is the most aggressive, accounting for up to 20 percent of breast cancers.

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. 

Mammograms, it turns out, are not so great at detecting the most lethal forms of disease — like triple negative — at a treatable phase. [D.C.I.S., on the other hand, which isn't actually cancer, just some high risk markers, is detected by mammograms.]

In this country, the huge jump in D.C.I.S. diagnoses potentially transforms some 50,000 healthy people a year into “cancer survivors " and contributes to the larger sense that breast cancer is “everywhere,” happening to “everyone.” That, in turn, stokes women’s anxiety about their personal vulnerability, increasing demand for screening — which, inevitably, results in even more diagnoses of D.C.I.S. 

When you’ve oversold both the fear of cancer and the effectiveness of our prevention and treatment, even people harmed by the system will uphold it, saying, ‘It’s the only ritual we have, the only thing we can do to prevent ourselves from getting cancer.’ ”

Thousands of women now consider double mastectomies after low-grade cancer diagnoses. According to Todd Tuttle, chief of the division of surgical oncology at the University of Minnesota and lead author of a study on prophylactic mastectomy published in The Journal of Clinical Oncology, there was a 188 percent jump between 1998 and 2005 among women given new diagnoses of D.C.I.S. in one breast — a risk factor for cancer — who opted to have both breasts removed just in case. Among women with early-stage invasive disease (like mine), the rates rose about 150 percent. Most of those women did not have a genetic predisposition to cancer. Tuttle speculated they were basing their decisions not on medical advice but on an exaggerated sense of their risk of getting a new cancer in the other breast. Women, according to another study, believed that risk to be more than 30 percent over 10 years when it was actually closer to 5 percent.

The fear of cancer is legitimate: how we manage that fear, I realized — our responses to it, our emotions around it — can be manipulated, packaged, marketed and sold, sometimes by the very forces that claim to support us. That can color everything from our perceptions of screening to our understanding of personal risk to our choices in treatment.  . . .There is so much ‘awareness’ about breast cancer in the U.S. I’ve called it breast-cancer overawareness. It’s everywhere. There are pink garbage trucks. Women are petrified.”

More than anything else, though, the ribbon reminds women that every single one of us is vulnerable to breast cancer, and our best protection is annual screening. Despite the fact that Komen trademarked the phrase “for the cure,” only 16 percent of the $472 million raised in 2011, the most recent year for which financial reports are available, went toward research. 

 “Imagine a group of 100 women who received diagnoses of breast cancer because they felt a breast lump at age 67, all of whom die at age 70,” Woloshin said. “Five-year survival for this group is 0 percent. Now imagine the same women were screened, given their diagnosis three years earlier, at age 64, but treatment doesn’t work and they still die at age 70. Five-year survival is now 100 percent, even though no one lived a second longer.”

At the same time, the function of pink-ribbon culture — and Komen in particular — has become less about eradication of breast cancer than self-perpetuation: maintaining the visibility of the disease and keeping the funds rolling in. 

And they whitewash illness: we’re made ‘aware’ of a disease yet totally removed from the challenging and often devastating realities of its sufferers.

[What does it say about Komen when "awareness" includes] "a Web site called Pornhub that would donate a penny to a breast-cancer charity for every 30 views of its “big-” or “small-breast” videos."

The median age of diagnosis in this country is 61. The median age of death is 68. The chances of a 20-year-old woman getting breast cancer in the next 10 years is about .06 percent, roughly the same as for a man in his 70s. And no one is telling him to “check your boobies.”

“A lot of people are under the notion that metastatic work is a waste of time,” said Danny Welch, chairman of the department of cancer biology at the University of Kansas Cancer Center, “because all we have to do is prevent cancer in the first place. The problem is, we still don’t even know what causes cancer. I’d prefer to prevent it completely too, but to put it crassly, that’s throwing a bunch of people under the bus right now.”

Perhaps for that reason, metastatic patients are notably absent from pink-ribbon campaigns, rarely on the speaker’s podium at fund-raisers or races. Last October, for the first time, Komen featured a woman with Stage 4 disease in its awareness-month ads, but the wording carefully emphasized the positive: “Although, today, she has tumors in her bones, her liver and her lungs, Bridget still has hope.” (Bridget died earlier this month.)

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.


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