Don't Call Me Princess

by Peggy Orenstein

It wasn’t so long ago that women fought to keep their breasts after a cancer diagnosis, lobbying surgeons to forgo radical mastectomies for equally effective lumpectomies with radiation. Why had that flipped? I pondered the question as I browsed through the “Stories of Hope” on the American Cancer Society’s Web site. I came across an appealing woman in a pink T-shirt, smiling as she held out a white-frosted cupcake topped by a pink candle. In a first-person narrative, she said that she began screening in her mid-thirties because she had fibrocystic breast disease. At forty-one, she was given a diagnosis of DCIS, which was treated with lumpectomy and radiation. “I felt lucky to have caught it early,” she said, though she added that she was emotionally devastated by the experience. She continued screenings and went on to have multiple operations to remove benign cysts. By the time she learned she had breast cancer again, she was looking at a fifth operation on her breasts. So she opted to have both of them removed, a decision she said she believed to be both logical and proactive.

  I found myself thinking of an alternative way to describe what happened.

  Fibrocystic breast disease does not predict cancer, though distinguishing between benign and malignant tumors can be difficult, increasing the potential for unnecessary biopsies. Starting screening in her thirties exposed this woman to years of excess medical radiation—one of the few known causes of breast cancer. Her DCIS, a condition detected almost exclusively through mammography, quite likely never would become life-threatening, yet it transformed her into a cancer survivor, subjecting her to surgery and weeks of even more radiation. By the time of her second diagnosis, she was so distraught that she amputated both of her breasts to restore a sense of control.

  Should this woman be hailed as a survivor or held up as a cautionary tale? Was she empowered by awareness or victimized by it? 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. “You could attribute the rise in mastectomies to a better understanding of genetics or better reconstruction techniques,” Tuttle said, “but those are available in Europe, and you don’t see that mastectomy craze there. 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.”

  “Nearly forty thousand women and four hundred men die every year of breast cancer,” Lynn Erdman, vice president of community health at Komen, told me. “Until that number dissipates, we don’t think there’s enough pink.”

  I was sitting in a conference room at the headquarters of Susan G. Komen, near the Galleria mall in Dallas. Komen is not the country’s largest cancer charity—that would be the American Cancer Society. It is, however, the largest breast-cancer organization. And although Komen’s image was tarnished last year by its attempt to defund a Planned Parenthood screening program, its name remains virtually synonymous with breast-cancer advocacy. With its dozens of races “for the cure” and some two hundred corporate partnerships, it may be the most successful charity ever at branding a disease; its relentless marketing has made the pink ribbon one of the most recognized logos of our time. The ribbon has come to symbolize both fear of the disease and the hope it can be defeated. It’s a badge of courage for the afflicted, an expression of solidarity by the concerned. It promises continual progress toward a cure through donations, races, volunteerism. It indicates community. And it offers corporations a seemingly fail-safe way to signal goodwill toward women, even if, in a practice critics call “pinkwashing,” the products they produce are linked to the disease or other threats to public health. Having football teams don rose-colored cleats, for instance, can counteract bad press over how the NFL handles accusations against players of rape or domestic violence. Chevron’s donations to California Komen affiliates may help deflect what Cal OSHA called its “willful violations” of safety that led to a huge refinery fire last year in a Bay Area neighborhood.

  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. At $75 million, that’s enough to give credence to the claim that Komen has been involved in every major breast-cancer breakthrough for the past twenty-nine years. Still, the sum is dwarfed by the $231 million the foundation spent on education and screening.

  Though Komen now acknowledges the debate over screening on its Web site, the foundation has been repeatedly accused of overstating mammography’s benefits while dismissing its risks. Steve Woloshin, a colleague of Welch’s at Dartmouth and coauthor of the “Not So Stories” column in The British Medical Journal, points to a recent Komen print ad that reads: “The five-year survival rate for breast cancer when caught early is 98 percent. When it’s not? It decreases to 23 percent.” Woloshin called that willfully deceptive. The numbers are accurate, but five-year survival rates are a misleading measure of success, skewed by screening itself. Mammography finds many cancers that never need treating and that are, by definition, survivable. Meanwhile, some women with lethal disease may seem to live longer because their cancer was found earlier, but in truth, it’s only their awareness of themselves as ill that has been extended. “Imagine a group of a hundred women who received diagnoses of breast cancer because they felt a breast lump at age sixty-seven, all of whom die at age seventy,” 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 sixty-four, but treatment doesn’t work and they still die at age seventy. Five-year survival is now 100 percent, even though no one lived a second longer.”

  When I asked Chandini Portteus, vice president of research, evaluation, and scientific programs at Komen, in January why the foundation continued to use that statistic, she didn’t so much explain as sidestep. “I don’t think Komen meant to mislead,” she said. “We know that mammography certainly isn’t perfect. We also know that it’s what we have and that it’s important in diagnosing breast cancer.” (The statistic was subsequently removed from its Web site.)

  In Pink Ribbon Blues, Gayle Sulik, a sociologist and founder of the Breast Cancer Consortium, credits Komen (as well as the American Cancer Society and National Breast Cancer Awareness Month) with raising the profile of the disease, encouraging women to speak about their experience and transforming “victims” into “survivors.” Komen, she said, has also distributed more than $1 billion to research and support programs. 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. “You have to look at the agenda for each program involved,” Sulik said. “If the goal is eradication of breast cancer, how close are we to that? Not very close at all. If the agenda is awareness, what is it making us aware of? That breast cancer exists? That it’s important? ‘Awareness’ has become narrowed until it just means ‘visibility.’ And that’s where the movement has failed. That’s where it’s lost its momentum to move further.”

  Before the pink ribbon, awareness as an end in itself was not the default goal for health-related causes. Now you’d be hard-pressed to find a major illness without a logo, a wearable ornament, and a roster of consumer-product tie-ins. Heart disease has its red dress, testicular cancer its yellow bracelet. During “Movember”—a portmanteau of “mustache” and “November”—men are urged to grow their facial hair to “spark conversation and raise awareness” of prostate cancer (another illness for which early detection has led to large-scale overtreatment) and testicular
cancer. “These campaigns all have a similar superficiality in terms of the response they require from the public,” said Samantha King, associate professor of kinesiology and health at Queen’s University in Ontario and author of Pink Ribbons, Inc. “They’re divorced from any critique of health care policy or the politics of funding biomedical research. They reinforce a single-issue competitive model of fund-raising. And they whitewash illness: we’re made ‘aware’ of a disease yet totally removed from the challenging and often devastating realities of its sufferers.”

  I recalled the dozens of news releases I received during last October’s National Breast Cancer Awareness Month, an occasion I observed in bed while recovering from my mastectomy. There was the one from Komen urging me to make a “curemitment” to ending breast cancer by sharing a “message about early detection or breast self-awareness that resonates with you”; the one about the town painting itself pink for “awareness”; the one from a Web site called Pornhub that would donate a penny to a breast-cancer charity for every thirty views of its “big-” or “small-breast” videos.

  Then there are the groups going after the new hot “awareness” demographic: young women. “Barbells for Boobies” was sponsoring weight-lifting fund-raisers to pay for mammograms for women under forty. Keep A Breast (known for its sassy “I ♥ Boobies” bracelets) urges girls to perform monthly self-exams as soon as they begin menstruating. Though comparatively small, these charities raise millions of dollars a year—Keep A Breast alone raised $3.6 million in 2011. Such campaigns are often inspired by the same heartfelt impulse that motivated Nancy Brinker to start Komen: the belief that early detection could have saved a loved one, the desire to make meaning of a tragedy.

  Yet there’s no reason for anyone—let alone young girls—to perform monthly self-exams. Many breast-cancer organizations stopped pushing it more than a decade ago, when a twelve-year randomized study involving more than two hundred sixty-six thousand Chinese women, published in The Journal of the National Cancer Institute, found no difference in the number of cancers discovered, the stage of disease, or mortality rates between women who were given intensive instruction in monthly self-exams and women who were not, though the former group was subject to more biopsies. The upside was that women were pretty good at finding their own cancers either way.

  Beyond misinformation and squandered millions, I wondered about the wisdom of educating girls to be aware of their breasts as precancerous organs. If decades of pink-ribboned early-detection campaigns have distorted the fears of middle-aged women, exaggerated their sense of personal risk, encouraged extreme responses to even low-level diagnoses, all without significantly changing outcomes, what will it mean to direct that message to a school-age crowd?

  Young women do get breast cancer—I was one of them. Even so, breast cancer among the young, especially the very young, is rare. The median age of diagnosis in this country is sixty-one. The median age of death is sixty-eight. The chances of a twenty-year-old woman getting breast cancer in the next ten years is about 0.06 percent, roughly the same as for a man in his seventies. And no one is telling him to “check your boobies.”

  “It’s tricky,” said Susan Love, a breast surgeon and president of the Dr. Susan Love Research Foundation. “Some young women get breast cancer, and you don’t want them to ignore it, but educating kids earlier—that bothers me. Here you are, especially in high school or junior high, just getting to know your body. To do this search-and-destroy mission where your job is to find cancer that’s lurking even though the chance is minuscule to none. . . . It doesn’t serve anyone. And I don’t think it empowers girls. It scares them.”

  Rather than offering blanket assurances that “mammograms save lives,” advocacy groups might try a more realistic campaign tagline. The researcher H. Gilbert Welch has suggested, “Mammography has both benefits and harms—that’s why it’s a personal decision.” That was also the message of the 2009 task force, which was derailed by politics: scientific evidence indicates that getting mammograms every other year if you are between the ages of fifty and seventy-four makes sense; if you fall outside that age group and still want to be screened, you should be fully informed of the downsides.

  Women are now well aware of breast cancer. So what’s next? Eradicating the disease (or at least substantially reducing its incidence and devastation) may be less a matter of raising more money than allocating it more wisely. When I asked scientists and advocates how at least some of that awareness money could be spent differently, their answers were broad and varied. Many brought up the meager funding for work on prevention. In February, for instance, a Congressional panel made up of advocates, scientists, and government officials called for increasing the share of resources spent studying environmental links to breast cancer. They defined the term liberally to include behaviors like alcohol consumption, exposure to chemicals and radiation, and socioeconomic disparities.

  Other researchers are excited about the prospect of fighting or preventing cancer by changing the “microenvironment” of the breast—the tissue surrounding a tumor that can stimulate or halt its growth. Susan Love likened it to the way living in a good or bad neighborhood might sway a potentially delinquent child. “It may well be,” she told me, “that by altering the ‘neighborhood,’ whether it’s the immune system or the local tissue, we can control or kill the cancer cells.” Taking hormone-replacement therapy during menopause, which was found to contribute to escalating rates of breast cancer, may have been the biological equivalent of letting meth dealers colonize a street corner. On the other hand, a vaccine, the current focus of some scientists and advocates, would be like putting more cops on the beat.

  Nearly everyone agrees there is significant work to be done at both ends of the diagnostic spectrum: distinguishing which DCIS lesions will progress to an invasive disease as well as figuring out the mechanisms of metastasis. According to a Fortune magazine analysis, only an estimated 0.5 percent of all National Cancer Institute grants since 1972 focus on metastasis; out of more than $2.2 billion raised over the last six years, Komen has dedicated $79 million to such research—a lot of money, to be sure, but a mere 3.6 percent of its total budget during that period.

  “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.”

  One hundred and eight American women die of breast cancer each day. Some can live for a decade or more with metastatic disease, but the median life span is twenty-six months. One afternoon I talked to Ann Silberman, author of the blog Breast Cancer? But Doctor . . . I Hate Pink. Silberman started writing it in 2009, at age fifty-one, after finding a lump in her breast that turned out to be cancer—a Stage 2 tumor, which she was told gave her a survival rate of 70 percent. At the time she was a secretary at a school in Sacramento, happily married and the mother of two boys, ages twelve and twenty-two. Over the next two years, she had surgery, did six rounds of chemo, took a trio of drugs including Herceptin, and, finally, thought she was done.

  Four months later, a backache and bloated belly sent her to the doctor; the cancer had spread to her liver. Why didn’t the treatment work? No one knows. “At this point, you know that you’re going to die, and you know it’s going to be in the next five years,” she told me. Her goal is to see her youngest son graduate from high school next June.

  It isn’t easy to face someone with metastatic disease, especially if you’ve had cancer yourself. Silberman’s trajectory is my worst fear; the night after we spoke, I was haunted by dreams of cancer’s return. 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 firs
t time, Komen featured a woman with a 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.)

  “All that awareness terminology isn’t about us,” Silberman said. “It’s about surviving, and we’re not going to survive. We’re going to get sick. We’re going to lose parts of our livers. We’re going to be on oxygen. We’re going to die. It’s not pretty, and it’s not hopeful. People want to believe in ‘the cure,’ and they want to believe that cure is early detection. But you know what? It’s just not true.”

  Scientific progress is erratic, unpredictable. “We are all foundering around in the dark,” said Peter B. Bach, director of the Center for Health Policy and Outcomes at Memorial Sloan Kettering Cancer Center. “The one thing I can tell you is some of that foundering has borne fruit.” There are the few therapies, he said—like tamoxifen and Herceptin—that target specific tumor characteristics, and newer tests that estimate the chance of recurrence in estrogen-positive cancers, allowing lower-risk women to skip chemotherapy. “That’s not curing cancer,” Bach said, “but it’s progress. And yes, it’s slow.”

  The idea that there could be one solution to breast cancer—screening, early detection, some universal cure—is certainly appealing. All of us—those who fear the disease, those who live with it, our friends and families, the corporations who swathe themselves in pink—wish it were true. Wearing a bracelet, sporting a ribbon, running a race, or buying a pink blender expresses our hopes, and that feels good, even virtuous. But making a difference is more complicated than that.

  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 treatment. And ultimately, it has come at the expense of those whose lives are most at risk.