Barbara Ehrenreich on Breast Cancer
Barbara Ehrenreich offers a unique and valuable point of view about an issue that so many care so passionately about...
Actually cancer was not my first run-in with a breast-related disease. About 20 years ago, the American Society of Plastic and Reconstructive Surgeons announced that small-breastedness is itself a disease: "There is a substantial and enlarging body of medical information and opinion to the effect that these deformities [small breasts] are really a disease." They even gave this disease a name-micromastia.
I was myself a sufferer from micromastia. It wasn't easy. Oh, I managed to hobble around, raise my kids and get my work done, but I knew how ill I really was.
Then just 3 years ago, a doctor told me that I didn't have to worry about breast cancer too much, because my breasts were small.
Now there's a doctor who doesn't have to worry about brain cancer too much...
Here's another relevant personal fact: In the 70s I was an activist in what we then called the women's health movement. We campaigned for safe contraceptives, against unnecessary surgery, for the option of unmedicated childbirth, for the right to choose abortion.
In the area of breast cancer, we battled against the practice of proceeding directly from biopsy to mastectomy, without even letting the patient wake up to make the decision herself. We wanted women to have the information and the right to make their own health care decision. We even took on the psychiatrists, with their peculiar theory that ambitious or outspoken women were suffering from "penis envy."
Anybody here ever envied a penis? Wanted to be one?
Anyway, when I was diagnosed with breast cancer 2 years ago, I did what any veteran of the Women's Health Movement would do: I started researching, looking especially for support and information from other women who had the disease. I ordered a half dozen book, mostly women's accounts of their breast cancer experiences. I waded out into the net and found scores of breast cancer websites, which I nervously devoured. I was looking for tips, ways to survive the treatments, questions to ask the doctors, and of course emotional support-sisterhood. I was sure that I would find the Women's Health Movement alive and well and able to help me.
I found a lot. But what I found shocked me. Yes, I found useful tips and information, but I found something else-that a whole culture (I don't know what else to call it) has grown up around breast cancer. And it certainly did not contain the sisterhood I was searching for.
How to define breast cancer culture?
It's very pink and femme and frilly - all about pink ribbons, pink rhinestone pins, pink t-shirts and of course a lot about cosmetics. The American Cancer Society offers a program called "Look Good�Feel Better" which gives out free cosmetics to women undergoing breast cancer treatment. The Libby Ross Foundation gives breast cancer patients a free tote bag containing Estee Lauder body cr�me, a pink satin pillowcase, a set of Japanese cosmetics, and 2 rhinestone bracelets. And no one, so far as I could determine, was complaining about the strange idea that you can fight a potentially fatal disease with eyeliner and blush.
I found that the culture of breast cancer is highly commercialized. First, in the sense that many apparently grassroots fundraising efforts are in fact sponsored by large corporations eager to court middle-aged females. Among them: Revlon, Avon, Ford, Tiffany, Pier 1, Estee Lauder, Ralph Lauren, Lee Denim, Saks Fifth Avenue, JC Penney, Boston Market, Wilson athletic gear. Where were they, I wondered, when the Women's Health Movement was fighting for abortion rights and against involuntary sterilization?
More amazing to me though, was the number of breast cancer-related items you can buy today: You can dress entirely in a breast cancer-theme: pink-beribboned sweatshirts, denim shirts, pajamas, lingerie, aprons, loungewear, shoelaces and socks; accessorize with pink rhinestone broaches, angel pins, scarves, caps, earrings and bracelets.
You can decorate your home with breast cancer candles, coffee mugs, pendants, stained glass pink ribbon candle holders, wind chimes and nightlights. You can pay your bills with special "Breastchecks" or a separate line of "Checks for a Cure."
To me, the most disturbing product, though, was the breast cancer teddy bears. I have identified four distinct lines, or species, of these creatures, including "Carol," the Remembrance Bear; "Hope," the Breast Cancer Research Bear; the "Susan Bear," named for Nancy Brinker's deceased sister Susan; and the new Nick and Nora Wish Upon a Star Bear, available, along with the Susan Bear, at the Komen Foundation website's "marketplace."
BREAST CANCER ACTION
For years, a San Francisco Bay Area woman with breast cancer had been seeking information about the causes and treatment of her disease. She consistently encountered an unresponsive group of government agencies and other organizations who provided inadequate, superficial information, not hard data. She grew angry and shared that anger with other women who had metastatic breast cancer. In the summer of 1990, they formed Breast Cancer Action (BCA), a grassroots organization of breast cancer survivors and their supporters.
The woman�s name was Elenore Pred, and Breast Cancer Action, the organization she helped to found, now has concerned supporters around the country. BCA has received national media attention for being at the forefront of the breast cancer activist movement. Because of BCA and other advocacy organizations, the public has grown more aware of the grim statistics of the breast cancer epidemic.
For too many years, breast cancer was considered each woman�s private trauma instead of the national public health emergency it is. Elenore Pred and her colleagues refused to let that happen any longer. As Elenore said, �This is not an individual woman�s personal tragedy; it is a tragedy for all women and together we have the power to change things.� Since Elenore Pred�s death in October 1991, BCA has continued the work she began.
BCA is a grassroots group: ordinary people who, by educating themselves on the facts and the issues related to breast cancer, have empowered themselves and others to create needed change. BCA works with in coalition with other organizations to bring about important policy changes on the local, state and federal levels.
As a result of our visioning and strategic planning process, Breast Cancer Action has identified three strategic priority areas on which to focus our work.
Visit Breast Cancer Action at their website for more information: http://www.bcaction.org
- Advocating for more effective and less toxic breast cancer treatments by shifting the balance of power in the Food and Drug Administration away from the pharmaceutical industry and toward the public interest.
- Decreasing involuntary environmental exposures that put people at risk for breast cancer.
- Creating awareness that it is not just genes, but social injustices - political, economic, and racial inequities - that lead to disparities in breast cancer outcomes.
Now I don't own a teddy bear-haven't had much use for one in 50 years. Why would anyone assume that, faced with the most serious medical challenge of my life, I would need one now? And that wasn't all: The Libby Ross tote bag that I just mentioned also contained a package of crayons-something else I haven't needed in many a decade. I began to get the feeling that this breast cancer culture is not only about being pretty and femme-it's also about regressing back to being a little girl-a very good little girl in fact.
There is, I would point out, nothing similar for me. At least men who are diagnosed with prostate cancer are not given gifts of matchbox cars.
But the worst of it, for me, was the perkiness and relentless cheerfulness of the breast cancer culture. The "Breast Friends" site, for example, features a series of inspirational quotes: "Don't Cry over Anything that Can't Cry Over You," "I Can't Stop the Birds of Sorrow from Circling my Head, But I Can Stop Them from Building a Nest in My Hair," and much more of that ilk.
You don't find a lot of complaining in breast cancer culture. Sure, people acknowledge that breast cancer is a terrible experience in many ways-you'll lose a breast or 2, you'll go through chemo and lose your hair and your immune response, you might get lymphedema and lose the use of your arms.
But guess what? You would turn out a better person for it-more feminine, more spiritual, more evolved. You would be something better than a mere cancer-free person; you would be a "survivor." Some quotes:
As "Mary" reports, on the "Bosom Buds" message board:
I really believe I am a much more sensitive and thoughtful person now� I enjoy life so much more now and am much happier now.
Cindy Cherry, quoted in the Washington Post, goes further:
If I had to do it over, would I want breast cancer? Absolutely.
And I've heard even worse on the health channel: gushing descriptions of breast cancer as a form of spiritual upward mobility. Something that a woman should be happy to experience.
Is there any other disease that has been so warmly embraced by its victims? (And yes, I use the word "victim"-that's another part of the perkiness-the failure to acknowledge that some of us are in fact victims of a hideous disease.) No one thinks TB, AIDS, or heart disease is supposed to be a "growth opportunity" and make you into a better person. No one is thankful for colon cancer, diabetes or gonorrhea. Why, I began to wonder, is a disease that primarily attacks women supposed to be something they should be grateful for?
So when I went looking for the Women's Health Movement to sustain me in my breast cancer ordeal I found something very different. In the 70s we used to get angry and militant about women's health issues: we barged into medical meetings, picketed hospitals, showed up uninvited at Congressional hearings. In the case of breast cancer, all that fighting spirit had been transformed into�pink cotton candy.
As for my own mood a year ago, when I was undergoing treatment. It wasn't sweet or spiritual or "feminine" in the old fashioned sense. I was angry, as angry as I have ever been in my life. I wondered if it was possible to express this anger in the breast cancer culture I'd been exploring. So I wrote a letter and posted it on the message board run by the Komen Foundation, the largest of the breast cancer foundations. What I said was:
I was diagnosed 6 months ago and have been through a mastectomy and chemotherapy. I don't think of myself as a "survivor" because too many women have gone thru the same "treatments" only to have their cancers recur a few years later.
What I am is angry.
Angry about "treatments" which are in fact toxic and debilitating.
Angry about all the emphasis on "early detection" when there is no way of knowing how early any detection is. Some small tumors are very fast-growing and some big ones are very slow. But no one seems to be making the distinction.
Angry about insurance companies: I'm not battling cancer, I'm battling Aetna, which is still refusing to pay for the biopsy�And what about all people without insurance? (Bush wants to cut help for them in his next budget, and I don't hear anyone from the breast cancer groups screaming.)
Angry about all the sappy pink ribbons, breast cancer teddy bears and other cute accessories when the fact is WOMEN ARE DYING.
And finally, angry that with all the money pouring into research, no one knows what the cause of breast cancer is. If I want to protect my daughter, we need to know the CAUSE.
Anyone else out there sick of the breast cancer hype?"
That's what I wrote; that's what I was feeling at the time.
The responses I got were alarming. "Suzy" wrote to say "I really dislike saying you have a bad attitude towards all of this, but you do, and it's not going to help you in the least." Several women offered to pray for me to achieve a better state of mind.
"Kitty," however, thought I'd gone around the bend:
You need to run, not walk, to some counseling... Please, get yourself some help and I ask everyone on this site to pray for you so you can enjoy life to the fullest.
It was at this point that I realized that there is nothing feminist-and not much even sisterly-about the culture that has grown up around breast cancer. Because one of the first principles of second wave feminism was that you honor women's experience and respect their feelings. You don't tell a woman who's been raped or assaulted or subject to medical maltreatment to "cheer up" and stop whining. We thought there was something powerful and constructive about anger-I still think there is-because it was anger, more than anything, that made us into tireless activists for women's health.
But here I was-expressing my heartfelt feelings-and being told by other women who had been through similar experiences to shut up and put on a happy face. To be a "Stepford patient." I began to suspect that the purpose of the breast cancer culture-with it's teddy bears, and crayons and cosmetics and pinkness-is to get us to regress to a child-like state, to suspend critical judgment, and get us to accept whatever the medical profession wants to do to us.
Now of course there are-or have been-rationales for all the aspects of breast cancer culture I found so offensive:
Being cheerful is supposed to save year life. Everything depends on your attitude, I was told again and again by the books and websites I consulted. Anger and sorrow will kills you; being upbeat will save you. Having an upbeat culture of breast cancer survivors-with their public displays of energy and athleticism-is justified again and again as a way of getting women to come forward and have their mammograms. If women neglect their annual screenings, it must be because they are afraid that a diagnosis amounts to a death sentence. I was told by doctors and breast cancer establishment figures that beaming survivors, proudly running races and climbing mountains, are the best possible advertisement for routine screening mammograms, early detection, and the ensuing round of treatments. Trouble is: neither of these rationales holds up under close examination.
The idea that attitude can save your life was based on studies purporting to show that women who participate in breast cancer self-help groups are both happier and live longer than those who don't. More recent studies show that women in support groups may be happier, but they don't live any longer than the sourpusses and social isolates who don't go to groups.
I'm all for support groups-it's just that they don't count as form of treatment! And I'm all for being happy, but it won't save your life.
As for the need to have a highly visible, cheerful, breast cancer culture in order to get women to get "squished"-the Oct 20 issue of the Lancet carried a study of past studies of the effectiveness of screening mammography-a study showing that all the past studies were flawed and that mass mammography screening does nothing to lower a country's breast cancer mortality rate.
We haven't heard the last word on this, and the breast cancer establishment is scrambling to find some new evidence that mammograms are worth it. But for now: fact is, they don't seem to do much, as some doctors have suspected for a long time. Ten years ago, the famous British surgeon Michael Baum called routine screening mammography "one of the greatest deceptions perpetrated on the women of the western world."
In other words, the establishment breast cancer culture-represented by the races for the cure, the pink ribbons and teddy bears-rests on a paradigm that has been disproved and discredited.
We don't need to be cheerful. And we may not need to get those mammograms every year-which means we don't need all this breast cancer "awareness' that the corporations and the foundations are always encouraging.
So what does it hurt to have this massive breast cancer culture? You could say: whatever gets you through the night...
But there are at least 2 major problems with it:
First, the breast cancer culture has encouraged a dangerous complacency about current medical approaches to breast-cancer treatment. Implicit in all the pink ribbons and the drumbeat for regular mammograms was the promise that your cancer could be cured-if only you bring it to the doctors' attention early enough. In other words, there's nothing wrong with the so-called treatments-the burden is on you to get your tumor detected "early."
But as I wrote to the Komen message board: not all small tumors are "early" and more easily treated. In fact, there is no single disease "breast cancer"-probably a multitude of diseases of various degrees of virulence. But right now, they're all being treated as a single disease.
Worse, current treatments-surgery, chemotherapy and radiation-carry no guarantee of long-term survival and are notoriously debilitating and disfiguring themselves. Every year, more than 40,000 American women die of breast cancer, large numbers of whom had duly submitted to screening mammograms and to the nightmarish treatments that ensued.
Even mammograms are something to worry about: Only one carcinogen has been definitely established as a cause of breast cancer, and that is ionizing radiation of the kind emitted by mammography machines.
A second big problem with the pink ribbon culture: While they want a cure-we ALL do-they say almost nothing about the need to find the CAUSE of breast cancer, which is very likely environmental. This omission makes sense: breast cancer would hardly be the darling of corporate charities if its complexion changed from pink to green.
But by ignoring or underemphasizing the issue of environmental causes, the pink-ribbon crowd function as willing dupes of what could be called the Cancer Industrial Complex: by which I mean the multinational corporate enterprise which with the one hand doles out carcinogens and disease and, with the other, offers expensive, semi-toxic, pharmaceutical treatments. Breast Cancer Awareness month, for example, is sponsored by AstraZeneca (the manufacturer of Tamoxifen) which until 1999 was also the fourth largest producer of pesticides in the United States, including at least one known carcinogen.
So the more I immersed myself in the pink ribbon culture - during those awful months of chemo last year-the more disgusted I got. But I had one lifeline, one source of hope and genuine sisterhood: My cousin happened to send me three back issues of the Breast Cancer Action newsletter. I read them cover to cover, absorbing information, thrilled to find other women who had confronted the disease and managed to keep their wits about them and their dignity intact.
I am deeply grateful that Breast Cancer Action was there for me when I needed it most. It is one of the few voices of clarity and consistently feminist determination within the vast sea of pink ribbons out there, and I'm here to ask you-implore you, in fact-to help it not only survive but grow.
I know it can, because when I published my thoughts on the pink ribbon culture-in Harpers last October-I was deluged with letters from women saying: Thank god, somebody feels the same way I do! Here's a project I'd like to see BCA have the resources to launch: a website for women don't want teddy bears and ribbons, who want ACTION! I'd like to see an interactive website to connect these women to each other, because this is what I needed a year ago-not to mention probably for the rest of my life. I'd call it "bad girls of breast cancer"-like the BCA t-shirt. This is MY dream for BCA and I hope you'll help make it possible.
Because we don't need to be infantilized when we're dealing with a potentially fatal disease, we don't need to be patronized with cosmetics and jewelry, and told to keep smiling, no matter what.
We don't need more "awareness" of breast cancer-we're VERY aware, thank you very much. We need treatments that work, and above all, we need to know the cause of this killer, so we can stop it before it attacks another generation.
And we certainly don't need a breast cancer culture that, by downplaying the possible environmental causes of cancer, serves as an accomplice in global poisoning-normalizing cancer, prettying it up, even presenting it, perversely, as a positive and enviable experience.
What we need is a truly sisterly response to this ghastly disease-one that is both loving and militant, courageous and caring, willing to confront the Cancer Industrial Complex and, when necessary, the entire $16 billion a year breast cancer industry, including the medical profession.
Are you with me? Will you be with me if my cancer returns?
Good!-then this is the time to stand with BCA and give them what you can - your time, your talent, your money!
Has feminism been replaced by the pink-ribbon breast cancer cult? When the House of Representatives passed the Stupak amendment, which would take abortion rights away even from women who have private insurance, the female response ranged from muted to inaudible.
A few weeks later, when the United States Preventive Services Task Force recommended that regular screening mammography not start until age 50, all hell broke loose. Sheryl Crow, Whoopi Goldberg, and Olivia Newton-John raised their voices in protest; a few dozen non-boldface women picketed the Department of Health and Human Services. If you didn’t look too closely, it almost seemed as if the women’s health movement of the 1970s and 1980s had returned in full force.
Never mind that Dr. Susan Love, author of what the New York Times dubbed “the bible for women with breast cancer,” endorses the new guidelines along with leading women’s health groups like Breast Cancer Action, the National Breast Cancer Coalition, and the National Women’s Health Network (NWHN). For years, these groups have been warning about the excessive use of screening mammography in the U.S., which carries its own dangers and leads to no detectible lowering of breast cancer mortality relative to less mammogram-happy nations.
Nonetheless, on CNN last week, we had the unsettling spectacle of NWHN director and noted women’s health advocate Cindy Pearson speaking out for the new guidelines, while ordinary women lined up to attribute their survival from the disease to mammography. Once upon a time, grassroots women challenged the establishment by figuratively burning their bras. Now, in some masochistic perversion of feminism, they are raising their voices to yell, “Squeeze our tits!”
When the Stupak anti-choice amendment passed, and so entered the health reform bill, no congressional representative stood up on the floor of the House to recount how access to abortion had saved her life or her family’s well-being. And where were the tea-baggers when we needed them? If anything represents the true danger of “government involvement” in health care, it’s a health reform bill that – if the Senate enacts something similar -- will snatch away all but the wealthiest women’s right to choose.
It’s not just that abortion is deemed a morally trickier issue than mammography. To some extent, pink-ribbon culture has replaced feminism as a focus of female identity and solidarity. When a corporation wants to signal that it’s “woman friendly,” what does it do? It stamps a pink ribbon on its widget and proclaims that some miniscule portion of the profits will go to breast cancer research. I’ve even seen a bottle of Shiraz called “Hope” with a pink ribbon on its label, but no information, alas, on how much you have to drink to achieve the promised effect. When Laura Bush traveled to Saudi Arabia in 2007, what grave issue did she take up with the locals? Not women’s rights (to drive, to go outside without a man, etc.), but “breast cancer awareness.” In the post-feminist United States, issues like rape, domestic violence, and unwanted pregnancy seem to be too edgy for much public discussion, but breast cancer is all apple pie.
So welcome to the Women’s Movement 2.0: Instead of the proud female symbol -- a circle on top of a cross -- we have a droopy ribbon. Instead of embracing the full spectrum of human colors -- black, brown, red, yellow, and white -- we stick to princess pink. While we used to march in protest against sexist laws and practices, now we race or walk “for the cure.” And while we once sought full “consciousness” of all that oppresses us, now we’re content to achieve “awareness,” which has come to mean one thing -- dutifully baring our breasts for the annual mammogram.
Look, the issue here isn’t health-care costs. If the current levels of screening mammography demonstrably saved lives, I would say go for it, and damn the expense. But the numbers are increasingly insistent: Routine mammographic screening of women under 50 does not reduce breast cancer mortality in that group, nor do older women necessarily need an annual mammogram. In fact, the whole dogma about “early detection” is shaky, as Susan Love reminds us: the idea has been to catch cancers early, when they’re still small, but some tiny cancers are viciously aggressive, and some large ones aren’t going anywhere.
One response to the new guidelines has been that numbers don’t matter -- only individuals do -- and if just one life is saved, that’s good enough. So OK, let me cite my own individual experience. In 2000, at the age of 59, I was diagnosed with Stage II breast cancer on the basis of one dubious mammogram followed by a really bad one, followed by a biopsy. Maybe I should be grateful that the cancer was detected in time, but the truth is, I’m not sure whether these mammograms detected the tumor or, along with many earlier ones, contributed to it: One known environmental cause of breast cancer is radiation, in amounts easily accumulated through regular mammography.
And why was I bothering with this mammogram in the first place? I had long ago made the decision not to spend my golden years undergoing cancer surveillance, but I wanted to get my Hormone Replacement Therapy (HRT) prescription renewed, and the nurse practitioner wouldn’t do that without a fresh mammogram.
As for the HRT, I was taking it because I had been convinced, by the prevailing medical propaganda, that HRT helps prevent heart disease and Alzheimer’s. In 2002, we found out that HRT is itself a risk factor for breast cancer (as well as being ineffective at warding off heart disease and Alzheimer’s), but we didn’t know that in 2000. So did I get breast cancer because of the HRT -- and possibly because of the mammograms themselves -- or did HRT lead to the detection of a cancer I would have gotten anyway?
I don’t know, but I do know that that biopsy was followed by the worst six months of my life, spent bald and barfing my way through chemotherapy. This is what’s at stake here: Not only the possibility that some women may die because their cancers go undetected, but that many others will lose months or years of their lives to debilitating and possibly unnecessary treatments.
You don’t have to be suffering from “chemobrain” (chemotherapy-induced cognitive decline) to discern evil, iatrogenic, profit-driven forces at work here. In a recent column on the new guidelines, patient-advocate Naomi Freundlich raises the possibility that “entrenched interests -- in screening, surgery, chemotherapy and other treatments associated with diagnosing more and more cancers -- are impeding scientific evidence.” I am particularly suspicious of the oncologists, who saw their incomes soar starting in the late 80s when they began administering and selling chemotherapy drugs themselves in their ghastly, pink-themed, “chemotherapy suites.” Mammograms recruit women into chemotherapy, and of course, the pink-ribbon cult recruits women into mammography.
What we really need is a new women’s health movement, one that’s sharp and skeptical enough to ask all the hard questions: What are the environmental (or possibly life-style) causes of the breast cancer epidemic? Why are existing treatments like chemotherapy so toxic and heavy-handed? And, if the old narrative of cancer’s progression from “early” to “late” stages no longer holds, what is the course of this disease (or diseases)? What we don’t need, no matter how pretty and pink, is a ladies’ auxiliary to the cancer-industrial complex.
Copyright 2009 Barbara Ehrenreich