Back in 2009, a lot of people asked me what I thought aboutÂ Princess and the Frog, the film Disney said trumpeted as featuring its first African American princess. My gut reaction was, I'll get excited when they release the film with theirÂ thirdÂ black Disney princess. I mean, leaving aside for a moment whether it's progress to make the princess industrial complex an equal opportunity exploiter, what I find, whether it's women in general or women of color in particular, is that Hollywood (and Disney especially) makes a Big Deal when they finally, after oodles and oodles of movies
Today I got a press release from one of my least favorite breast cancer organizations: Keep-A-Breast, the folks that brought you those annoying I â™¥ BoobiesÂ bracelets. I've written about this before. There are so many things wrong with Keep-A-Breast it's hard to know where to begin. There is, of course, the whole issue of the blithe sexualization of breast cancer, a disease that, trust me, is anything but sexy (hey, Baby, want to see my mastectomy? I didn't get to "keep a breast," dang it). I wrote back in 2010 about how the fetishizing of breasts comes at the expense of the bodies, hearts and minds attached to them.Â What disturbs me more, though, is the way that focusing on a youth demographic--especially early detection in a youth demographic--is doing a disservice to the cause of breast cancer. Campaigns like this (as I said in last year's piece, "Our Feel-Good War Against Breast Cancer") Â are usually motivated by caring and grief: the woman who began Keep-A-Breast lost a friend to breast cancer in her 20s. But focusing on early detection--that Â is not going to reduce young women's death rates from the disease.Â Keep-A-Breast urges girls to perform monthly self-exams as soon as they begin menstruating. Though comparatively small, these charities raise millions of dollars a year â€” 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 thereâ€™s no reason for anyone â€” let alone young girls â€” to perform monthly self-exams. Many breast-cancer organizations stopped pushing it more than a decade ago, when a 12-year randomized study involving more than 266,000 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-aged crowd?
Young women do get breast cancer â€” 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 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 â€œcheck your boobies.â€
â€œItâ€™s tricky,â€ said Susan Love, a breast surgeon and president of the Dr. Susan Love Research Foundation. â€œSome young women get breast cancer, and you donâ€™t want them to ignore it, but educating kids earlier â€” that bothers me. Here you are, especially in high school or junior high, just getting to know to your body. To do this search-and-destroy mission where your job is to find cancer thatâ€™s lurking even though the chance is minuscule to none. . . . It doesnâ€™t serve anyone. And I donâ€™t think it empowers girls. It scares them.â€
Did you hear the big news? Earlier this week theÂ Supreme Court declined Easton Area School District's appealÂ to ban Keep A BreastÂ i love boobies!Â bracelets in their schools. Below is an excerpt of a responseÂ blog I wroteÂ on how I felt. Although this is a huge victory for freedom of speech for students everywhere and Keep A Breast we know our fight isn't over. We still need your support to keep educating young people on the importance of breast cancer prevention. I hope you will consider making a donation right now. Will you support Keep A Breast?
Iâ€™ve been camping since last Saturday, so wasnâ€™t here when my story on contralateral mastectomy was published in the New York Times. Â In its aftermath, Iâ€™ve gotten positive feedback from researchers, physicians and advocates, including Karuna Jagger of Breast Cancer Action, who wrote this follow-up; Gayle Sulik, author of Pink Ribbon Blues and founder of the Breast Cancer Consortium; and Susan Love, author of Susan Loveâ€™s Breast Book (bible for the newly diagnosed)Â and medical director of Dr. Susan Love Research Foundation. The blogger who goes by The Risky Body also wrote two really thoughtful responsesÂ aimed at--though not exclusively for--the community of women with a known BRCA mutation. Iâ€™ve Â received email from individual women in the throes of making their initial treatment decisions; from women who chose CPM and later were diagnosed with metastatic disease; and from those for whom the decision to remove the healthy breast went horribly, painfully awry (reminding me that we tend to underplay the risks and potential complications of surgery.
Iâ€™ve also read online the articles in response to the piece by those who chose CPM and are happy with that decision or who want to explain their point of view. Like thisÂ one on Slate, and this one on Forbes. So for them, in particular, there are some things that Iâ€™d like to clarify. First of all, I want to reiterate that the data on survival does not apply to those who carry a genetic predisposition to breast cancer (such as a BRCA mutation) or those with a strong family history of the disease. It applies to women who were at average risk of contracting breast cancer and are at average risk of contracting a second cancer. The vast majority of women choosing CPM fall into this category, by the way.
There were so many things I couldn't fit into a 1200 word article--had I been able to write something longer I could've been far more comprehensive and nuanced. That said, I made the points that were most important to me to make. Two interesting facts I couldn't fit in: one, this trend towards CPM has happened even as treatment reduces the likelihood of contracting a second cancer. I find that interesting. Also, this is an American phenomenon: according to Todd Tuttle, chief of surgical oncology at the University of Minnesota (Ski-U-Mah!)Â there was not a similar uptick of CPM in Europe over the time period studied. Itâ€™s worth noting that there is also no greater incidence of contralateral cancer or death from the disease there over that time period. Nor do European women seem to choose CPM for cosmetic or other reasons cited by American women.
Why the difference? One reason, according to researchers, is the rise in use of MRIs, which have an inordinate rate of false positives, subjecting women to the physical and psychological stress of unnecessary biopsies. According to researchers at Sloan-Kettering:
Women who had a breast MRI as part of their preoperative evaluation were three times more likely to choose CPM,â€ she says. MRIs may detect additional areas of breast cancer that are missed by mammography, but the rate of false positives is quite high. â€œIf the MRI finds something that looks suspicious, many women say, â€˜I would rather just have a double mastectomy than go through the process of having biopsies on my other breast.â€™
Another reason, is that choices are not made in a vacuum. They are made in a cultural, political and economic context. Â As I wrote in my New York Times Magazine piece last yearÂ (and Karuna Jaggar wrote this week, in the piece linked above),Â pink ribbon culture has inadvertently stoked a fear of breast cancer so that women consistently over-estimate their risk of disease. In the end, I believe, that over-estimation comes at the expense of effective advocacy.
My goal with the CPM piece, as with all my pieces on breast cancer, was to report solid information that has not been adequately reported in mainstream media, information that can reduce harmâ€”such as over-screening and over-diagnosisâ€”and tremind people of what is important about breast cancer advocacy: reducing the number of women who are harmed by and especially who die of breast cancer. To my mind that means focusing on potential environmental factors involved in the disease; focusing on prevention; focusing on less toxic and more effective treatment; understanding DCIS and, in particular, understanding the mechanisms of metastatic disease. One concern I had about the rise of CPM--and the statistics showing the rise was due to over-estimation of its benefits and over-estimation of the risk of a second cancer-- was that by giving women a false sense of security, misleading them into thinking they were improving their odds at survival, it would detract attention and resources from where they need to go. I canâ€™t imagine that anyone, including those who chose CPM for some other reason, would think that was a good idea. I can't believe anyone, including those who chose CPM for other reasons, would want women to choose it because they are misunderstanding risk and benefit. I can't imagine anyone including those who chose CPM for other reasons, would want women choosing CPM because they think it will save their lives when multiple studies--and this new one in particular--have shown that it won't.
The research on CPM is clear, in multiple studies, that many women pursue it both because they over-estimate their risk of a second primary and because they believe CPM will be life-saving (I'll put some links at the end of this post). Again, I would think that regardless of why you personally chose CPM you would believe it is important that newly diagnosed women make their decisions based on accurate information. In Todd Tuttleâ€™s research, cited in my New York Times Magazine story, women estimated their chances of contralateral cancer to be 30% over 10 years when it was actually less than 5%. Maybe the women who have written in response to my piece that they chose CPM for other reasons already knew that, but obviously many women do not. Do you really want them making decisions about surgery based on such misinformation?Â That scares me. And itâ€™s wrong from a public health perspective.
From that perspective women should understand, loud and clear, that CPM is not, for a woman at average risk of cancer, a medical necessity. As Steven Katz said to me during our interview, conversations with the newly diagnosed should start with, â€œCPM is a futile procedure in terms of prolonging life.â€ Then-- again from a public health perspective--we can have a discussion about whether surgery should be the frontline treatment for those with intense fear or anxiety about cancer even when that surgery has no medical basis.
A number of women have written to me and said they had CPM for cosmetic reasons. Thatâ€™s a choice, certainly, as any cosmetic procedure is a choice. In making it, you certainly have to balance the risks of surgery with other factors. Personally, Iâ€™d like newly diagnosed women to know that I donâ€™t feel at all â€œunbalancedâ€ with one fake breast and one real breast. My breasts are not asymmetrical, or no more asymmetrical than the average woman's or than they were before after 50+ years of wear and tear. With my clothes onâ€”including scoop necks and low-cut bathing suits--you canâ€™t tell at all. Naked, my breasts look about as good as they did before, though the reconstructed breast has more scars both from where the tumors were removed and because in the last four months Iâ€™ve had two biopsies on that side (both turned out to be--guess what?--not one but TWO rare surgical complicationsâ€¦.). Also, again in the spirit of full disclosure, my previous radiation compromised the nipple-sparing surgery, so while I have a nipple it doesnâ€™t look as good as it might or like the one on the other side. CPM wouldn't have changed that. But if those things werenâ€™t true, youâ€™d have a hard time visually distinguishing the fake from the real. Internally (i.e., to me) they do feel different. My natural breast feel natural. My fake one feels like I'm wearing a tight bra all the time that I can't take off. Women who are considering implants (I have a DIEP-flap because my previous radiation makes implants difficult) can certainly wait to have a second breast removed and reconstructed to see how they feel about it, even though it does mean further surgery. But, really, thereâ€™s no rush. DIEP has to be done all at once, which complicates the issue. Ultimately, I would advise a woman considering her choices who is concerned about symmetry to talk to those who have had DIEP on one side and on both sides and ask, if possible, to see their breasts. Iâ€™m happy to show mine (but only in personâ€”not on the web!!) . You really have to see reconstruction in person to totally get it.
As for those who have decided to go flat, that too is an option and always has been. I definitely considered it. As long as it's understood that it's not life-prolonging for those at average risk or that what you're doing is somehow implicitly superior (in terms of treatment or in terms of maternal sacrifice) to those who, say, have a lumpectomy and radiation.
Anyway. Iâ€™m not here to litigate anyoneâ€™s past choices, including my own. My belief is that you make the treatment decisions that you make with the information you have at the time of diagnosis understanding that such information may change, become obsolete or incorrect. And you donâ€™t look back. When I was originally diagnosed chemo was not recommended. A few years later, all women under 40 with cancer were treated with chemo as a matter of course. Oops. A few years after that, they went back to the way it was when I was first diagnosed. Oops again. I was among the first women to have a modified sentinel node biopsy. A few months earlier, they wouldâ€™ve done the big scoop. A few months later, I would have had an actual sentinel node biopsy. So it goes. I've been around this world a long, long time. Longer than most patients, I'd wager. I've seen a lot.
I think about the women who had the Halsted radical mastectomy (which, according to Robert Aronowitz, even he knew would only prevent local recurrence, not metastatic disease); I wonder how they felt when it first became clear that lumpectomy and radiation would have sufficed. Were they resistant? Angry? Sorry? Did they celebrate that other women, that their own daughters, would not have to go through what they did?
Because that is the great news, isnâ€™t it? Women at average risk do not have to fear keeping their healthy breast when diagnosed with cancer. Iâ€™m so grateful for that for the sake of anyone diagnosed in the future. And again: shouldnâ€™t we be making sure that newly diagnosed women know that so that they make their decisions from a perspective of the greatest knowledge?
Finally, Â as promised, here are some links beyond those listed above. I would encourage anyone interested in this issue, whether or not you have chosen CPM, to actually look at the research.
I imagine that now I will get a lot of comments from women explaining why they personally had CPM. That's fine, I guess. But not the point. The point is to ensure women have a realistic understanding of what the procedure can and cannot do for them. It is tragic and even cruel for someone to have CPM based on the false belief that it will prevent death. I hope we can all agree on that.
So you know when you're watching CNN or MSNBC or FOX news orPBS or whatever and they have some talking head on a monitor chatting with the host? Well here's how they do that when you're the guest: you are sitting alone in a black-walled, darkened room staring into a camera lens. You do not see the host. You do not see the other guests. You do not see yourself. You have no idea whether or not you are on-screen at any given moment. You hear the host and the other guests through the earpiece and you talk earnestly at nothing at all. It's a seriously weird deal. But that's how it goes, especially if you live in California and most of the media is in New York. I never get used to it. But I did it the other night because I was asked to be on the PBS News Hour with Gwen Eiffel and, really, how cool is that? Anyway, here's how it came out:
"Ick!" My daughter said. "What does that have to do with sports, Mom?"
"Absolutely nothing," I responded.
She Â glanced at the next magazine over, Â also Sports Illustrated, with this cover of Mikaela Shiffrin looking very real and really happy with her incredible accomplishments.
My daughter looked back and forth for a moment, then grabbed the Â Shiffrin cover and put it on top of the swimsuit issue, blocking it from view.
"There," she said, satisfied, and walked away.
Yes. That's my grrrl.
Like a lot of moms, I faced the Barbie dilemma when my daughter was younger. I solved it--ta da!--through hypocrisy and mixed messages. Ok, maybe that's a little harsh. But I Â figured a little bit of Barbie would sate her appetite (and stop the nagging) without doing tooÂ much harm. Like a vaccination, or homeopathic innoculation against the Big Bad. I told myself my daughter didn't use her dolls for fashion play anyway: her Barbie "funeral," for instance, was a tour de force of childhood imagination. I told myself I only got her "good" Barbies: ethnic Barbies, Wonder Woman Barbie, Cleopatra Barbie. Now that she's 10 and long ago gave the dolls away (or "mummified" them and buried them in the back yard in a "time capsule"), I can't say whether they'll have any latent impact on her body image or self-perception. It would seem ludicrous, at any rate, to try to pinpoint the impact ofÂ one toy. To me it was never about a single product anyway--not even the Princesses, though I'm often accused of thinking that--it was about the accrual of products, the conveyor belt we put girls on at ever-younger ages that tells them that how they look, first and foremost, is who they are. But now, according to a study published this week, Â it turns out that playing with Barbie, even career Barbie, may indeed limit girlsâ€™ perception of their own future choices. Psychologists at Oregon State and the University of Santa Cruz randomly assigned girls ages 4-7 to play with one of three dolls. Two were Barbies: a fashion Barbie (in a dress and high heels);
and a "career" Barbie with a doctorâ€™s coat and stethoscope.
Â (NOTE: I just pulled these images from the web: I don't know which Barbies or Potato Heads they used. Interestingly, though, the doctor Barbie I found on Amazon costs $35Â whereasÂ the fashionista Barbies are $11-$15. AndÂ one more note: I'm from the era when we used actual POTATOES for our Potato Head dolls, sticking them with push-pin pieces on which you could easily impale yourself--or your sibling. Those were the days, eh? Anyway, back to the topic at hand...).
Ahem. So, after just a few minutes of play, the girls were asked if they could do any of 10 occupations when they grew up. They were also asked if boys could do those jobs. Half of the careers, according to the authors, were male-dominated and half were female dominated. The results:
Girls who played with Barbie thought they could do fewer jobs than boys could do. But girls who played with Mrs. Potato Head reported nearly the same number of possible careers for themselves and for boys.
More to the point:
There was no difference in results between girls who played with a Barbie wearing a dress and the career-focused, doctor version of the doll.
Obviously, the study is not definitive. Obviously, one doll isnâ€™t going to make the critical difference in a young womanâ€™s life blah blah blah. Still, it's interesting that it doesnâ€™t matter whether the girls played with fashion Barbie or doctor Barbie, the doll had the same effect and in only a few minutes. That reminded me of a study I wrote about in CAMD in which college women enrolled in an advanced calculus class were asked to watch a series of four, 30-second TV commercials. The first group watched four netural ads. The second group watched two neutral ads and twoÂ depicting stereotypes about women Â (a girl enraptured by acne medicine; a woman drooling over a brownie mix). Afterward they completed a survey andâ€”bing!â€”the group whoâ€™d seen the stereo- typed ads expressed less interest in math- and science-related careers than classmates who had watched only the neutral ones. Let me repeat: the effect was demonstrable after watching two ads. And guess who performed better on a math test, coeds who took it after being asked to try on a bathing suit or those who had been asked to try on a sweater? (Hint: the latter group; interestingly, male students showed no such disparity.)
Now think about the culture girls are exposed to over and over and over and over and over, whether in toys or movies or tv or music videos, in which regardless of what else you areâ€”smart, athletic, kind, even feminist, even oldâ€”you must be "hot." Perhaps, then, the issue is not â€œwell, one doll canâ€™t have that much of an impact,â€ so much as â€œif playing with one doll for a few minutes has that much impact what is the effect of the tsunami of sexualization that girls confront every day, year after year?â€
(If Barbie were life-sized she'd beÂ 6 feet tall with a 39" bust, 18" waist, and 33" hips. This representation was made by then-high school studentÂ Galia Slayen and originally fromÂ a post by Today News)
Children come to life innocent, unaware of the harsh aspects of pain and suffering and how cruel people can be. Part of the job of parenting is to protect them from that harsh truth long enough for them to develop a sense of goodness and core values of optimism, trust, internal curiosity, and a hunger for learning. If they see too much too soon--before they're neurologically and emotionally ready to process it--it can short-circuit that natural curiosity. Boys and girls alike are easily traumatized by premature exposure to the media-based adult culture that cultivates cynicism and cynical values, treats sex and violence as entertainment, routinely sexualizes perceptions of girls and women, and encourages aggression in boys.
As a parent, I was initially taken aback by how actively I've needed to protect my child's childhood (and her creative imagination) from predatory marketers and crass media. I had no idea that would be such a challenge. If you haven't seen Steiner-Adair's book check it out. It has great thoughts on how to guide your kids through the digital wilderness (and, I'm warning you now, won't let you off the hook about your own habits). Â If her name sounds familiar, it's because she's also authored a path-breaking curriculum on Â fostering health and leadership Â among girls. Â
So I am in the Twittersphere dog house and, it seems, justifiably so. Itâ€™s hard to respond in 140 chars (especially hundreds of times) so whether I dig myself in further here or adequately respond, at least I have a little space. Here goes.
I was wrong, stupid and insensitive to not read Lisa Bonchek Adams herself before promoting Bill Kellerâ€™s editorial. The internet is often a reactive place, and although I try to resist that impulse, to think before I tweet, I messed up. I hit the send button without doing the research I should have based on something in his piece that did resonate quite strongly with me â€”the idea that the American medical establishment prioritizes quantity over quality of life in end-of-life care. I didn't much think about the personal example being used to make that point, just assumed he was right (and you know what happens when you assume....).
Here was my thinking:
I am hyper-sensitive to the idea that cancer patients who donâ€™t â€œdo everythingâ€ are lesser than others. I have a dear friend who opted to stop treatment for metastatic disease. She faced pressure by her doctors. She faced pressure by her family (and yes, she had small children --she was in her 30s). People accused her of â€œgiving up.â€ She was not seen as brave or heroic or self-determining. Years later I bumped into a mutual friend who still referred to Â this woman as someone who â€œgave up the fight.â€ That rankled. So when I read a journalist saying we needed to think about our attitude regarding end-of-life care and "heroic measures," it landed deeply with me.
Even not end-of-life care. I am supposed to be in treatment for my own disease for four more years. Or maybe 9 more years, if my doctors have their way. I will have to make a decision about that at some point. It makes my stomach sink to think about nine more years of crappy side effects. But when do you say when? How do I weigh survival benefit versus lifestyle benefit? I struggle mightily with this. I suspect that if I choose to say no to the treatment it will be a stigmatizing choice, explicable only to a few of those close to me. If I were later to be diagnosed with metastatic disease, would I be blamed? Would I blame myself?
Meanwhile, I am still feeling the sting of what Gayle Sulik called â€œheartfelt misinformationâ€ spread by Amy Robach in the wake of her cancer diagnosis. I wish her well, of course I do. I mean obviously. Unfortunatelyâ€”and I know this from personal experience, too--when you put yourself in the public eye as a cancer patient you no longer get a free pass. Gayle Sulik wrote beautifully about this: So I was, I guess, feeling easily triggered by anyone's personal story that smacked of that.
Yet Lisa Adams' does not. And none of the above is an excuse for not doing my own research to find out. she was not a good choice for a discussion of end-of-life care. Â I apologize to her for thoughtlessly piling on. Again, I refer Â to Gayle Sulik, who Â wrote her own piece about the Keller-Adams controversy that says it all.Â Â
Some have accused me of backing â€œteam NY Timesâ€ in this debate because of my relationship there. Let me give you a little inside baseball: while we Â have the amazing gift of prominence and audience for our work, we Magazine writers do not have much by way of internal status. We operate in a netherworld, our inclusion on â€œthe teamâ€ situational, depending on whether we reflect well or poorly on the corporation. Nor do I know Bill Keller personally, at least I donâ€™t recall ever meeting him (so please don't tell me that I did in 1988 and just forgot). I do, however, know Â his wife, Emma Gilbey Keller. We have met in person once, for about 30 seconds, but we are Twitter pals. After my recurrence, she emailed me to tell me sheâ€™d been through the surgery I was facingâ€”the DIEP-flap reconstructionâ€”and offered herself as Â a resource. I knew no one who had gone through this so that was a Godsend. Emma was unstintingly generous with her time, sending me long emails, checking in on me when she didnâ€™t hear from me, letting me know what to expect, guiding me through a deeply frightening and painful (physically and emotionally) process, boosting my morale and offering information. She even sent me a good luck blanket to take into the hospital, because she had so often been cold during the week in intensive care. All, as it turned out, while her father, with whom she was extremely close, was dying and she was recovering from her own cancer surgery. Again, we are essentially strangers--I blurbed a book of hers that I liked years ago, but we don' t know each other. I am so grateful to her and always will be. So if anything colored my willingness to back Bill without question, it was my gratitude and loyalty to Emma. That means I will not add to the discussion and speculation about them in this space.
Again, that is not an excuse. I was wrong not to do my due diligence. And I apologize, again, to Lisa Adams, her followers as well as my own followers and readers for that. One of the unsettling parts of the internet is that you canâ€™t take things back. I would have done this differently. Itâ€™s a lesson learned.
Just in case you stop by this blog and are wondering: Hey, Peggy, where you at? I am, for the moment, trying to stay offline as I report and frame a new book. Unless I pull way back from other forms of communication, I have a super hard time doing that. So I'll be back at some point, when I'm further along. Meanwhile, thank you for your patience and on-going interest in my work! -Peggy
I'm trying to stay off blogging and social media for awhile while I launch a new project (procrastination is just too tempting) so this will be brief. I don't think there is much to say anyway except, whoa! Hell no! NEIGH to the evolution of my little pony!
Here's Huffington Post on the new MLP, featuring a quote from me.Â I had a lot more to say, obviously, but what they quoted was certainly blunt.
It's taken me awhile to read the story I wrote in 2007 for MORE magazine on being tested for BRCA mutations. I find it difficult to go back and read anything I've written about cancer. It's emotional, painful. Once a part of the journey is in the past I'd like to keep it there. But that's not my destiny, I guess. So I went back and read the piece and found I still stand by it, I still like it and I think it still has value, especially now, although at the time I didn't know or understand about gene patenting. I read a blog on "The Broad Side" in which the writer said:
I’ve read pieces that call into question the science, hope that Jolie becomes a voice for breaking up the monopoly on the BRCA test itself and far more who fawn over Jolie’s courage. Yet, rare in the pages and pixels spilled over Jolie’s decision is any real framing of what it is to sit where she sat and make that decision.
I can't really say whether that's true-I haven't read all the media. But if it is, for the record, I thought I'd reprint my piece here and you can see exactly what it feels like to go through testing. I'm not sure if, technically, I'm allowed to reprint a whole piece, even my own. But I hereby give myself permission because, heck, it's MY PIECE (do I sound the like granddaughter, daughter and sister of a bunch of lawyers?). And then, really, I've got to sign off for awhile:
Put to the Test: The Breast Cancer Gene
A woman with breast cancer undergoes genetic testing to find out whether she carries a breast cancer gene
Was My Breast Cancer Just a Fluke?
The thing I remember most about being told I had breast cancer was how the colors in my home office — where I’d been tidying up for the day, preparing to go to a movie with my husband — went flat. Isn’t that odd, I thought, looking down at my newly alien torso. My red shirt has turned gray. My red shirt has turned gray, and I might die.
That spectrum shift was the first sign that I’d passed through an invisible membrane into the parallel universe of the ill. I turned to my husband, Steven, who was standing in the doorway, listening in disbelief on the extension as the surgeon told us that I was a lucky woman, that the cancer was low-grade and slow growing, eminently treatable with a lumpectomy and six weeks of radiation. We stared at each other for a beat, as close and as distant as we had ever been. He reached his hand out, as if to keep me with him. "But I eat organic broccoli!" I wailed, and then began to cry.
That was January 1997, only six weeks past my thirty-fifth birthday. The odds of being diagnosed at that age were one in 233. A fluke. "Do you have a family history?" an acquaintance asked when I told her the news. I suppose it was a natural question, although fewer than a quarter of breast cancers are familial. But it struck me — along with the inevitable queries I’d field about whether I held in anger, had endured a trauma, or had been depressed — as a way for other women, under the guise of caring, to reassure themselves that they were safe. "No, I don’t," I snapped. "No one in my family has had breast cancer. I’m just like you."
As far as I knew, that was true.
A week later, I read an article in the paper about a blood test that could detect inherited mutations in the BRCA genes, BRCA1 and BRCA2. In most women the BRCA genes suppress tumor growth. In some families, however, the gene contains a flaw, passed along by either the mother or the father, that makes it do the opposite, predisposing its carriers to breast and ovarian cancer. About one in 800 people carry the BRCA1 mutation in the general public, but among Ashkenazi Jews — those whose ancestors emigrated from middle or Eastern Europe — the rate of mutations in either gene is closer to one in 40. I’m an Ashkenazi Jew. My aunt had died of ovarian cancer at 54. At the time, we thought that was a fluke too. Yet even as the thought, this could be me, entered my head, I rejected the idea. No one else in my extended family had been sick. Besides, I already knew my lifetime breast cancer risk: It was 100 percent.
There is a little bit of Vegas in predictive genetic testing, a roll of the statistical dice. Even if you found, let’s say, that you had an 80 percent risk for some disease, who’s to say you wouldn’t be in the other 20 percent? What if the known risk-reducing treatments come with risks of their own, the way tamoxifen, the widely used breast cancer drug, increases the risk of uterine cancer? Increasingly, all of us will be running the numbers and weighing the trade-offs on one scary condition or another — we all have skeletons lurking in our skeletons. In its zeal to find them, science has outpaced the medical, psychological, and ethical implications of its discoveries.
Cardiovascular disease. Diabetes. There will be gene tests for all of them and more, and each will bring with it the same questions: Who should be tested? What is the benefit of knowing you’re at risk, especially if, as with the degenerative and ultimately fatal Huntington’s disease, there is no cure available? What responsibility does a person who tests have to family members, including those who might not want to know the status? Should genetic testing be a factor in choosing whom you marry? Would some couples want to abort if their fetuses were found to have a tendency toward cancer? Mutations are not a guarantee of cancer, remember, and cancer is by no means a death sentence. Maybe there are some things we can’t, or shouldn’t, control.
The BRCA tests were among the first gene tests to hit the marketplace, and since they involve half the population and are harbingers of so much to come, they’re important and bear watching. That doesn’t make them any easier to deal with. "There are people who come in for their first genetic counseling session, then we never see them again," said Richard King, director of the division of genetics and molecular medicine program at the University of Minnesota, in Minneapolis. "The risks are scary to face. But I’ve also seen the benefits of testing, even with Huntington’s disease. Families can get things organized and understand things better, be more prepared.
"Would I be tested in that position?" he paused. "I don’t know. I can’t give a direct answer without thinking about it. Just like everyone else."
A Schism in Our DNA
My mother mentioned something in passing: My Great Aunt Goldie had died of a "stomach ailment."
"You mean she had ovarian cancer?" I asked.
She hesitated. "It’s possible," she said. "Though who knows? Back then, it could’ve been appendicitis."
Oh, she continued, and Great Aunt Jane? On Grandpa’s side? She had breast cancer in her 70s. And Anice, my first cousin once removed? The one who’d lived on a ranch in Montana? Breast cancer killed her in her early 40s. Then there was Great Aunt Minnie; she died of breast cancer too. "But she was phobic," my mom assured me, as if mental illness changed the physical one. Minnie wore only white and lived in an all-white house in Los Angeles with all-white furniture, including her grand piano. When she got sick, she refused to go to a hospital for treatment — she was afraid there’d be germs there. It seemed to me that Minnie had a lot more to worry about than breast cancer.
I, on the other hand, was getting increasingly nervous — maybe cancer really did lurk in my family’s gene pool. I still hoped to have children; what might I be passing on to them? A year after finishing my breast cancer treatment, I finally mentioned it to my GP. "Everyone has some family history of cancer," he said, shrugging. But he suggested I make an appointment with a genetic counselor, saying, "I think it will ease your mind."
I eyed the other patients at the Comprehensive Cancer Center at the University of California San Francisco. Were they getting treatment, or were they also waiting for someone to read their genetic tea leaves? An elderly couple shuffled in with his-and-hers walkers, the legs of which had been made scuff-proof by attaching Day-Glo tennis balls. In another context I might have pitied them their frailty, but nowI found myself envious. At least they’d made it this far.
Calculating My Breast Cancer Risk
My counselor was a young, sweet-faced woman named Lisa, who would assess my risk of a mutation from what was already known; then the decision of whether to get tested would be mine. She took my family history, tapping her pencil on her desk a few times before explaining that a Jewish family with just one case of early onset breast cancer, combined with one case of ovarian cancer at any age, was statistically likely to have a mutation. Then she pulled out a pie chart. "See this section?" she asked, pointing to a large white slice. "This is sporadic breast cancer. It’s random. It represents about 70 percent of all breast cancers. These women have no previous family history of disease."
I nodded. That, I had assumed, was me. "Now see this section?" she continued, pointing to a smaller, striped area. "These are people with familial cancer, but without any known cancer-gene involvement; they may have other behavioral or inherited factors at work, such as body size or a naturally higher level of estrogen. This represents about 20 percent of cases.’‘
I nodded again. "Now this section," she said, pointing to a thin, black sliver of the pie. "This is where I think you fall. These are people with a genetic mutation. My suspicion would be that you have a BRCA1 mutation. It carries a 60 to 85 percent lifetime risk of breast cancer and a 20 to 50 percent risk of ovarian cancer." She went on to say that if I did have children, there was a 50 percent chance that I would pass the mutation on. She continued, but my mind had already floated away. It was so tacky to make that pie segment black, I was thinking, so insensitive. Couldn’t they make it green? Or polka-dotted? Less of a grim reaper?
I focused my anger on the chart; I couldn’t absorb what the counselor was saying. Not yet. If she was guessing right, that meant I could get cancer again and again? And the next time, it could be in my ovaries? If I had children and they got sick, it would be my fault. Should I not have them? What if my mother hadn’t had me?
If I did have the mutation, I finally heard Lisa say, the most effective risk-reducing options for mutation carriers were a double mastectomy and an ovariectomy, removal of one or both ovaries. That is: amputation of healthy body parts. Once again, I gazed down at my body, which suddenly seemed like an assassin, a stranger. I’m a journalist, someone who believes in the power of knowledge. But for the first time in my life, I was weary of information. I wanted to go back to the land of the well; I wanted my visa to this other, desolate country permanently revoked.
The Gene I Didn’t Get
A long time later, I would find a kind of terrible beauty, a poetry in the BRCA mutations. They are ancient flaws, which some say date back to about 75 CE, around the time when the Romans sacked Jerusalem and forced the Jews into an exile that would last nearly two thousand years. There are now as many as 11 million Ashkenazim scattered throughout the world, but, since we’ve had a tendency to intermarry, we mostly descend from the same few thousand forbears. As devastating as the thought of having a mutation was, it was still a tangible connection to my deepest past, to a web of ancestors stretching across millennia. One of my grandparents had carried that legacy, deadly yet sacred, in its history. So had his or her grandparents. And their grandparents. And theirs. The schism in our DNA had flowed through each of them into my own mother’s blood and finally into mine. Somehow, knowing they were all in me — with me — through this made me feel stronger.
I also read about a study of people with perfect pitch. That trait too may be partially genetic and, as it happens, may be disproportionately found in Ashkenazi Jews. My brother has it, as does his son. I do not. Great, I thought. They got the perfect pitch gene, while it looks like I got the cancer gene — and I might add, the fat upper arms.
Taking the Genetic Test
Why is there no exact feminine equivalent of the word emasculated? That’s how I felt about the idea of prophylactically removing both of my breasts. Maybe they aren’t the only source of my femininity, my sexuality, but I’m rather attached to them (as they are to me). We have a lot of history together, me and the girls: standing up to those junior high boys who called me a pirate’s dream (because of my "buried treasure"); chanting the legendary bust-increasing mantra from"Are You There God? It’s Me, Margaret." (It didn’t work.) Giving pleasure. Getting pleasure.
I had chosen lumpectomy before, in part because I felt it would leave me less scarred, psychologically as well as physically, by my illness. Some women feel the opposite — mastectomy, even when clinically unnecessary, is a reassertion of control over their bodies, their destinies — but I needed to be able to look into the mirror each day and see, more or less, what I always had. I was willing to wager that the kind of breast cancer I had was the kind my body would always make: slow growing and treatable. I had no idea whether that was actually true.
Ovarian cancer was a different story — it’s hard to detect, and nearly 65 percent of sufferers die within five years of diagnosis. I’d seen my aunt’s abdomen swell to the size of a basketball and watched the mischief and vitality drain from her lovely face. "Numbers aren’t the only way women make these decisions," said Beth Crawford, manager of UCSF’s cancer riskprogram. "If you’ve experienced loss, you may make a different choice than someone with little history of cancer in her family. I’ve met women who don’t have retirement accounts, they’re so convinced that they’ll die young. For them, knowing they can reduce risk with a mastectomy or ovariectomy comes as a relief."
Yes, No, Maybe?
About a third of the women who test positive in Crawford’s program have risk-reducing double mastectomies, and two-thirds undergo a risk-reducing ovariectomy. Seventeen percent of the latter group have turned out to have early stage, highly treatable cancers, tumors which, without the surgery, would probably not have been caught until they were lethal. That was a pretty powerful argument. On the other hand, I wasn’t eager to experience the jarring discomforts or health risks of early, surgical menopause. "Risk tolerance is different for everyone," Crawford said. "Some women can just monitor themselves closely and sit comfortably with that; others can’t. Everyone has to come to the decision that best allows them to go forward."
And what would that decision be for me? I stood at the craps table, feeling truly crappy, wondering what testing would mean to my mind, my body, my heart. I kept shaking those dice for the next six years. Then, at age 41, I gave birth to my daughter, and it became clear: I wanted to be here for her first day of kindergarten, to dance at her wedding and to meet my grandchildren. I needed to be tested. Either way, I’d keep my breasts, but if it came out positive for the mutation, I wanted my ovaries gone. Now. And so one day, in between the breastfeeding and diaper changing, I drove to the hospital, had my blood drawn and let those dice roll. The strangest thing was, I wasn’t even sure which result I was rooting for.
It came out negative.
"We were as surprised as you are," Crawford told me. "We calculated that you had a 90 percent chance of being positive.
"We call this an uninformed rather than a true negative," she added, explaining that if you thought of the BRCA gene as a document, the current test functioned as a spell and grammar check: It could find missing, extra or transposed letters and words. But if a whole sequence or chapter was gone, the test wouldn’t know anything was missing and would come out clean. So I might still have a mutation, they just couldn’t yet find it. I’d expected a yes or a no — or, more precisely, I’d expected a yes. But a maybe? No one told me that was a possibility. "Do I still have the ovariectomy?" I asked.
"Well, we can’t really make any recommendations beyond regular surveillance, because you don’t have a known mutation. Maybe in another year or so we’ll have something new to offer you." She smiled sympathetically. "I’m afraid this is a bit like peeling an onion."
I walked out of the hospital into the Northern California fog more lost and frightened than when I’d gone in. Perhaps my body really was a time bomb. Or maybe my cancer and my aunt’s were totally unrelated. A fluke, after all. I’d finally gambled on the test, and what did I learn? Bupkes. Part of me wished I had tested positive. At least then I’d know how to protect myself. Instead, I was left with the unknown — like everyone else.
The truth is, it’s not possible to ward off all evil, all disease, all ill luck. Maybe, someday, there will be much better detection, better treatment of breast and ovarian cancers, more understanding of the causes, even cures. I’ll be pushing for all of that, for myself and for my daughter, regardless of our risks. Meanwhile, simple as it sounds, I’m left with one last, best choice: living my life as it comes, every day — just as I always have.
Breast Cancer Special Report
Originally published in MORE magazine, October 2007.
...But then Katie Ford Hall sent me this amazing blog post she wrote reflecting on her own bilateral mastectomy after a stage III cancer diagnosis and the on-going conversation about Angelina Jolie. It's beautifully nuanced and gets at the complexities and subtleties (I think). Take a read.
I'm off to my college reunion and going on blog hiatus. See you!
Yesterday, in the comments section of this blog, I was reprimanded by a reader named Becca, a young woman with breast cancer who has chosen to have her healthy breast removed to reduce her risk of future disease. She took exception to my last post. I wrote a long response to her in the comments section, then realized I'd rather put that response here, where it's more visible. Here is what Becca wrote:
Fear is not the only reason women get bilateral mastectomies. Younger women with breast cancer (like myself, diagnosed at 35) are more likely to have this surgery for a lot of reasons, such as: * we have many more years of life to develop a new primary in the other breast. My surgeon, also at MSKCC, estimated my risk to be 25% or higher. (I’m BRCA negative) * we want a symmetrical chest * we want to lessen our need for additional surgeries in the future, which we would likely need to achieve symmetry as our natural breast aged.
I’m starting to resent this idea that women are getting too much surgery because we are uninformed, pressured by our doctors, or sniveling cowards. I’m part of a group of about 1000 young women who’ve had breast cancer. Most of us had bilateral mastectomies. None of us regret it. The women who do have regrets? Those who need constant monitoring of the “good” breast — which means every-6-month mammograms or MRI, and biopsies of anything suspicious. Those trying to get dressed every day while being very lopsided. But most of all, those women who end up developing a new breast cancer and have to go through surgery/chemo/radiation AGAIN. I think you’re downplaying how terrifying, disruptive, difficult and damaging this is to a woman.
Bilateral mastectomies are not the right choice for every woman diagnosed with breast cancer. But they were right for me, and for so many of my co-survivors. Please respect our choices too.
Also this: “Anyone can have body parts cut off.” What!? Really?
And here is my response:
Becca, I understand how emotional this issue is, believe me. I've been through cancer treatment twice, the first time at a very young age. In fact, I'm still in cancer treatment and will be until at least 2017.
I don't think women who choose bilateral mastectomy are cowards. But I also don't think they are heroes. Not even Angelina Jolie. Is she really braver than someone who opted for surveillance, or to have her ovaries removed? If so, why? So many of the choices we have with cancer are murky and lousy. My point in saying that "anyone can cut off body parts" was that if that's where she stops it is really not enough. Rather than arguing, we who have faced this need to be agents of change, to educate ourselves as thoroughly as possible and push for better options for the next generation so they don't have to go through what we did. I don't want my daughter's only choice, should they some day find a new genetic mutation that I have and, Heaven forbid, she has, to be the brave choice of surgery. I just don't. Nor do I don't want women to believe we can amputate our way out of an epidemic.
You may have made a fully informed choice to remove both breasts. I have a number of friends over the years who've made the same decision and they were also fully informed. But the research clearly indicates that many women--perhaps not you or your friends or my friends-- are opting for bilateral mastectomies without an accurate understanding of their risk or education about what the procedure will and will not do for them in terms of future cancer. I can't believe you would think that's ok. Women (typically cancer patients are older than you or I) are estimating their risk of a new cancer over ten years to be 30% when it is closer to 5%. If they are basing surgery on that assumption, it is simply not informed choice.
It also worries--and, frankly, offends--me that Angelina Jolie's reconstruction is being called a "boob job." If you accuse me of playing down the disruptiveness of surveillance (though personally I never found it especially disruptive), I would say the far bigger danger at this moment is playing down the risks and realities of mastectomy.
Gayle Sulik writes about the aggressive publicity campaigns launched by some reconstructive surgeons since Jolie's announcement. I have, as a journalist, experienced a similar onslaught and find it repugnant. These PR-releases also only discuss the positives. None mention women who after reconstruction suffer, as Sulik writes, "on-going pain and weakness, scar tissue, nerve damage, risks of infection and implant rupture, and other complications." I've known many women with implants, which is what Jolie has and what you apparently have. Some are very happy with them as you are. They are lucky. Others have had constant issues and deflations and multiple surgeries and wish they'd never done it. Some implants look relatively natural. Others harden and look like bad porn star boobs. Flap surgeries, which I had, carry their own risks, of which I was informed.
What's more, no matter how good-looking or symmetrical reconstruction may be, it is, essentially, a permanent prosthesis. A reconstructd breast has no sensation. You may look good in clothes and hot to others, but you will feel nothing when touched. It is the sensory equivalent of having a ball of socks on your chest. Why isn't that out there along with Angelina's "beautiful results" so women considering such surgery are fully informed? I find that when I tell my friends that my reconstructed breast is numb they are shocked: they had no idea that would be so. Just like they don't know that breast cancer in your breast doesn't kill you. Just like they don't know that breast cancer doesn't spread laterally. Just like they don't know that lifetime risk is not the same as current risk. If you understand all of that, again, and you choose bilateral mastectomy, that's fine. Or if mastectomy is required, as in my case, that's the way it goes. But I am extremely concerned about misinformed decision-making.
Also, I'm sure you know that while you may not need surgery to adjust for sagging, implants tend not to last more than about 10-15 years. So, since you were so young, you will eventually need additional surgeries to replace the implants. Your implants may also get in the way of detecting a chest wall recurrence.
I was also diagnosed young: in 1997, at 35 years old. I considered mastectomy at the time, but since lumpectomy with radiation has been proven over and over to be equally effective (possibly more so) that was the direction I went. I did have concerns about the radiation at such a young age, and it wasn't an easy decision.
I never considered removing my healthy breast (I tested BRCA-) although my risk of a new primary in my other breast was also about 25% over my lifespan. I figured that made my risk 13% higher than someone else's over several decades. Which sucks, but then again, there was a 75% chance I wouldn't get a second cancer. At that time I didn't take tamoxifen, which would've reduced that risk considerably. The drug puts you into menopause, at least temporarily, and I wanted to have a child. Since my recurrence I have started taking it and it lowers that lifetime risk in the other breast to 12%--that of an average woman. You may have a more aggressive form of disease than I did, or a form that won't respond to tamoxifen. That is a different set of decisions as well. A woman who dislikes the size, shape or other aspects of her healthy breast may also make a different set of choices and be less concerned with sensation.
There were benefits to waiting to do a mastectomy (though I didn't do mine by choice). As an older woman (and after having a baby) I have enough belly fat to use for reconstruction. I was too thin to do that in my 30s (sigh) and, anyway, it was less commonly done. That means my new breast is not an implant. It was made from my own flesh. It won't degrade. It matches my healthy breast and will (for better or worse) be similarly affected by gravity. So no replacement down the line, no nip and tuck. I am done with surgery. And I am not, nor will I be, "lopsided" as a result of keeping my healthy breast. (I probably would have had an implant if I could have--the initial surgery is WAY easier, but I'm glad it ended up this way).
I also benefited because nipple-sparing mastectomy was not then available. Now it is. Again, still no sensation, but it looks better. For those considering prophylactic mastectomy who can possibly delay, know that there are new techniques in the offing that may be less invasive and create a better result. Maybe, some day, they will even spare the nerves. That's another reason to take into account how your risk changes over time.
Becca, being diagnosed with cancer young is horrifying and scary and I'm sorry it happened to you, too. Often it means the cancer you have is more aggressive. This was not the case for me (I have "little old lady" cancer) and I hope it's not for you. It may interest you to know what has happened to the women in my initial support group of women under 40 with breast cancer.
Sadly, two have died. They had aggressive disease from early on and mastectomy would have made no difference to them.
Those of us who are still here are now in our fifties with full, busy lives. Most of us are faring well. Two have metastatic disease; one has been living with mets for 15 years. A mastectomy would not have made a difference to either of them. Three have had chest wall recurrences, one despite mastectomy. I am the only one who has had a local recurrence.
Removing my healthy breast would not have changed that. Admittedly, a mastectomy would have. Still, the chances that this would have happened were very small--maybe 6% at most. There have been advantages to delaying mastectomy 15 years. And while a local recurrence does raise my risk of metastatic disease, it is not by much. So for me, living with that small risk of recurrence was worth it, even though things have not fully gone my way.
Everyone else, as far as I know, has remained healthy and I hope always will. Three of us who had not yet had children have gone on to become mothers, which has been a great gift.
In every case except perhaps mine, our status has played out as the original biology of our tumors would predict.
No one has been diagnosed with a new cancer in her other breast.
I hope for and work towards better options so that none of our friends, sisters, mothers, aunts, daughters, neighbors etc will have to face the choices we did.
So, still on Angelina here. And why, aside from her marriage to Brad Pitt and her right leg having its own Twitter account, you and I are not like her. This clip from CNN is the best and most responsible summations I've seen over the last week. http://www.youtube.com/watch?v=P32GgL2n03g
I love it because Dr. Monica Morrow from Memorial Sloan-Kettering is smart, calm and clear. She explains not only what you need to know but what you should ask your own doctor if 1) you're concerned about a genetic mutation or 2) you are a woman of seemingly average risk diagnosed with breast cancer in one breast and think you should respond by having a double mastectomy "just in case."
The other reason this clip is great is because of the intelligence and sensitivity of the interviewer, Zoraida Sambolin, who is herself dealing with a breast cancer diagnosis (though she doesn't reveal the nature of her cancer). When she starts talking about her decision-making process her voice shakes. I can see how hard this is for her to talk about on camera. But she sees it through in a way that is real, beautiful and, yes, brave.
Some key statements Dr. Morrow made that bear repeating:
Most women, even those with a mother or sister with breast cancer, don’t have a BRCA mutation.
In the U.S. we’re seeing an incredible increase in double mastectomy in women [diagnosed with cancer in one breast] paradoxically at the same time that the risk of cancer in the other breast has gone steadily down because the medicine we use to treat the cancer you already have reduces that risk.
I am, you may recall, one of the beneficiaries of that risk reduction. I take a drug every day called tamoxifen, which I'll be on for a total of five years. It is not perfect--its side effects range from annoying night sweats to a small increase in your chance of uterine cancer--so you wouldn't want to take it without real cause. But you also wouldn't want to do chemo without cause. You take a drug because you need it. And I need it. Tamoxifen reduces my risk of cancer in my healthy breast to that of an average woman. As I wrote in the New York Times Magazine:
Average risk, after all, is not zero. Could I live with that? ...What did doing “everything” mean, anyway? There are days when I skip sunscreen. I don’t exercise as much as I should. I haven’t given up aged Gouda despite my latest cholesterol count; I don’t get enough calcium. And, oh, yeah, my house is six blocks from a fault line. Is living with a certain amount of breast-cancer risk really so different? I decided to take my doctor’s advice, to do only what had to be done.
Back to the CNN piece. Another crucial statement by Dr. Morrow:
It’s important for women to understand that having your other breast removed does not prolong your life. Many women believe that’s true. Unfortunately, it’s not. Breast cancer doesn’t spread from breast to breast so removing one breast doesn’t reduce your risk of the cancer spreading.
When you are diagnosed with breast cancer I know, believe me I know, you want it out yesterday. But in most cases there's really no rush. Take a few weeks: gather information, ask questions, find the right doctor. You will live with these decisions for the rest of your life which will hopefully be long and fruitful. Make them from a place of knowledge, not emotion. Find out what your true risk is not only of breast cancer but of metastatic disease (which is the kind that kills you) and how removing your breast or breasts will affect that. Recognize that in many cases lumpectomy and radiation are as good and possibly better than mastectomy in terms of survival. Remember that what you do to your breast will not affect your survival as much as what you do systemically. To any physicians reading this: I know that today's sensitive docs are taught to "listen" to their patients. But you are still responsible for educating them completely and fully. You can correct misinformation; you can give your opinion and argue for it.
Remember: Primum Non Nocere.
Finally, my favorite thing Dr. Morrow said, something I may have tattooed right across my fake breast (since it's numb, I wouldn't feel the needles---bonus!) :
SURGERY IS A BAD WAY TO TREAT FEAR.
I respect Angelina Jolie's decision, but the take-away ought to be that it was a lousy choice to have to make. I'm not so sure having surgery makes her "brave," but what she does next might: like whether she becomes a voice against gene patenting, something you can find out more about from in this video from the ACLU or from groups like Breast Cancer Action or Breast Cancer Consortium (you will see nothing about gene patenting on Komen's site, by the way, perhaps because Myriad Genetics, which owns YOUR genes, is a donor!).
Anyone can have body parts cut off; courage comes from asking why the choices are so grim; bravery from becoming an agent of change. So far, the only beneficiary of Jolie's revelation had been Myriad, whose stock rose in the wake of her announcement. I can't believe that was her intent.
Angelina, don't you want better choices for your children?
Shiloh Jolie-Pitt, Angelina and Brad's 6-year-old daughter, February 2013
Largely because of the cover story I wrote on breast cancer a few weeks back in the New York Times Magazine, I spent yesterday being asked my reaction to Angeline Jolie’s announcement of her preventative double mastectomy. I talked to newspaper reporters, was on TV, on the radio. I wrote a post for the New York Times Magazine blog. But sometimes in this new media era of quick turn-around, we're compelled to react so fast we don’t have much of a chance to actually think. And twenty-four measly hours later, as the dust has settled a bit, these are the issues I believe are stake: The advisability of removing your breasts and ovaries when you have a rare genetic mutation such as Jolie’s (the BRCA1 mutation affect .6% of the general population; about 1% of Ashkenazi Jews; about 5-10% of women diagnosed with breast cancer). Hers was a totally understandable and medically warranted choice. It’s worth noting, however, that research on those families is primarily based on those that have been devastated by cancer. It may turn out over time that if families with less incidence are included, the risk of death is lower than previously believed. Still, it’s a viable choice. And a lousy one to have to make. Which brings me to:
The expense of the test-$3,000--and crummy options for women with a positive result. Myriad Genetics owns the patent on the BRCA genes. That's right: Owns. Genes. As Karuna Jaggar, exectutive director of Breast Cancer Action writes on the organization’s blog that means it controls all research, testing (including its costs), diagnostics and development of treatments related to the BRCA genes. Elsewhere she writes:
This monopoly prevents anyone else from so much as examining the genes, and creates barriers to scientific research and medical care relating to breast and ovarian cancer, including:
• High testing costs. • No second opinions. • Undermining research. • Blocking the development and availability of alternative tests. • Lack of data sharing and analysis. • Limited information for underserved populations.
Breast Cancer Action, along with researchers, genetic counselors and cancer patients joined a lawsuit to overturn Myriad Genetics’ patent (and by extension any company’s patent on our genes). The case was heard last month by the U.S. Supreme Court; a ruling is expected this summer.
Facing the decisions high risk women confront is excruciating. Perhaps by pushing beyond the personal story and into the larger questions we can make things a little better for the next generation. You might be wondering where Komen stands in all of this. They are silent. Perhaps because Myriad Genetics is one of their donors.
Another issue is the way we talk about breast cancer. Breast cancer is not one disease; it is a family of diseases that range from the virulent to the relatively benign. So it is not, by a long shot, an automatic death sentence and we need to recognize that so we can respond reasonably and appropriately--tumor biology matters. As patients, our situations are not all the same; they run a huge gamut that requires a range of decision-making.
Meanwhile, Pink ribbon culture, as I wrote in the piece, has stoked our (understandable) fears of breast cancer creating, if unintentionally, an exaggerated perception of risk among the average woman. That’s affecting our health choices and, ironically, deflecting attention from those who truly need it--those with metastatic disease.
I reported in my piece that there has been a steep rise in the percentage of women choosing to have both breasts removed after a low-grade cancer diagnosis in one breast. That will not keep the disease from spreading elsewhere in your body (which, again, is what is lethal, not cancer in your breast) . The hope is to prevent a new cancer on the other side. One would assume that women making such a radical decision would be provided with the most accurate information and deepest understanding of personal risk. Yet, researchers have found that such women vastly over-estimated their risk of a new cancer, believing it to be be 30 percent over 10 years when it was really 5 percent. Meanwhile, for those of us whose cancer allows it, treatments like Tamoxifen and aromatase inhibitors both reduce the chances that our existing disease will spread and reduce our risk in the other breast.
Ultimately our fear of breast cancer--or the manipulation of those fears-- can distract us from what actually needs to be done to reduce the incidence of this potentially deadly disease and lower risk for everyone. It distracts us from demanding research into prevention; the mechanisms by which cancer spreads; less toxic, more effective treatments; the impact of social social inequity.
Barbara Brenner, a breast cancer activist who died last week, used to say we can’t shop our way out of the breast cancer epidemic. Sadly, we can’t amputate our way out of it either.
So many people have sent me links to Jamie Moore's work. Moore is a photographer and mom to a 5-year-old girl, Emma. In response to the cultural omnivorousness of Disney Princess, she she began to think about:
...all the REAL women for my daughter to know about and look up too, REAL women who without ever meeting Emma have changed her life for the better. My daughter wasn’t born into royalty, but she was born into a country where she can now vote, become a doctor, a pilot, an astronaut, or even President if she wants and that’s what REALLY matters. I wanted her to know the value of these amazing women who had gone against everything so she can now have everything.
Gosh, that is so beautifully written, isn't it? Anyway, she and Emma chose five of those women for Emma to dress up as to honor for her fifth birthday.
...but there are thousands of unbelievable women (and girls) who have beat the odds and fought (and still fight) for their equal rights all over the world……..so let’s set aside the Barbie Dolls and the Disney Princesses for just a moment, and let’s show our girls the REAL women they can be.
You have got to see the results. GOT TO. This is exactly what I mean when I talk about "fighting fun with fun." Everyone has their own limits, tolerance, acceptance for the Disney Princesses and all that comes after, but wherever you stand on that spectrum, it's important to give your daughter a broader view (no intended, sort of) of what it means to be a girl and a woman. So thank you SO MUCH for giving me something beautiful I can share with my daughter, Ms. Moore and Emma.
I hope you don't mind if I reprint one of your photos here....And could you please, please keep going with this project? We need it!
I often wonder if the general reader knows about fact-checkers. A fact-checker at a magazine verifies every single fact that a writer includes in an article. Every. Single. One. So, say, when I turned in my recent article, "Our Feel-Good War On Breast Cancer" to The New York Times Magazine I had to provide an annotated copy of the piece along with acceptable documentation for everything I had written. In this case, that included multiple articles from peer reviewed publications such as The New England Journal of Medicine, The Journal of Clinical Oncology and the British Medical Journal, statistics from National Cancer Institute and its SEER database, things like that. Statistics quoted in other articles are unacceptable—even other fact-checked publications. If I see an interesting statistic in Time or on Reuters I have to track down the original source or it's a no-go. Nor could I use a stat from a breast cancer advocacy group without tracing it to its source. I also had to supply the emails and phone numbers of every person I interviewed so they could be contacted to verify what they said to me.
As you can imagine, this is a laborious, grueling process. Some facts that would have made it into a blog post or a less stringent magazine did not stand up to the test of the Times. I lost some battles I felt I should have won. I got frustrated and snippy. But in the end, I know that what I wrote has integrity. It's solid. It's accurate. And I’m grateful for that. I'm not saying the New York Times Magazine (or the paper itself) never makes errors--it does, sometimes bigtime. But there is accountability. To my mind, that's why journalism—real journalism—continues to be an important public service. Fact-checked media can still sometimes be wrong, misled, deceived. But it is accountable.
So when someone named Tara Meltzer called me “irresponsible” in The Huffington Post I took the slur seriously. And when she--and by extension HuffPo--makes statements with no attribution, research or fact-checking I have to respond: it is not only a matter of my reputation, but of public health. If Meltzer had attacked me on a personal blog, I’d let it go—that’s her dinner party. But this is HuffPo, a publication that itself has pretentions towards mainstream respectability and accountability. They can't have that and be indifferent accuracy. So, here we go.
Meltzer starts her column out, after expressing her personal anger towards me, by saying:
A mammogram isn't something you stare into space twirling your hair thinking about twice. If you don't have a family history, get a baseline at 35 and annually once you hit 40. If you do have a family history, you probably have to start earlier.
Ms. Meltzer, what is the source for that medical advice? According to my reporting, the recommendations for a baseline screening under forty for women of average risk were dropped by the early 1990s. The National Cancer Institute, for instance, currently says:
studies to date have not shown a benefit from regular screening mammography in women under age 40 or from baseline screening mammograms (mammograms used for comparison) taken before age 40.
I discuss the potential benefits versus the harms of screening in your forties in my piece, so I won't reiterate that here. But it might be useful to look at what Dr. Susan Love wrote back in 2009, in (waddaya know!) The Huffington Post about why in this country we still screen women annually in that demographic when so many other countries do not (I am quoting Love because she is a recognized expert in the field):
...in January, 1997, there was a large consensus conference sponsored by the National Cancer Institute to discuss this issue. Independent experts representing researchers, clinicians, statisticians, epidemiologists, and consumers testified and 12 independent experts reviewed the data. Their conclusion was '...that the data currently available do not warrant a universal recommendation for mammography for all women in their forties.' They recommended that women decide with their doctors on the best approach to take.
You would have thought that this reasoned approach would settle the issue but immediately a storm of acrimonious protest broke out as well documented by Virginia Ernster in the American Journal of Public Health. Within days of the conference and heavy lobbying by various special interest groups, the Senate voted 98 to 0 to endorse a nonbinding resolution that the presidentially appointed National Cancer Advisory Board recommend mammography screening for women under 50. By March a press conference was held to announce the NCAB's recommendation that the NCI advises women age 40-49 to have screening mammograms. So, the current recommendations, far from being scientifically based, were based on lobbying by interested parties seeking to support a public view which exceeded the science. [emphasis mine)
You (or Ms. Meltzer) can also take a look at one of Tara-Parker Pope's excellent columns on mammography. Or read this Times op-ed by Dr. Love. I also just received copies of two books that look fascinating: The Big Squeeze and The Breast Cancer Wars. If you're really digging in, I'd suggest Pink Ribbon Blues; Pink Ribbons, Inc; and Unnatural History: Breast Cancer and American Society.
Okay, back to Ms. Meltzer's complaints:
What bothers me the most about Orenstein's article is that most people aren't privileged enough to live in NYC and have access to the best care and the most progressive thinking. If you live outside NYC, Los Angeles or any other cosmopolitan area, chances are strong a woman won't be encouraged to get a mammogram until her 50th birthday
First of all, I don’t live in New York City. I live in the Bay Area, which is indeed a bastion of progressive thinking. And while progressive thinking is in no way limited to major metropolitan areas, it is true that those of us who live in big cities often have better access to care.
But I wouldn't define "progressive thinking" as Meltzer does. In fact, given the most current research, it would not involve a blanket recommendation of screening mammograms beginning at 40. Quite the opposite. Nor would doctors who know their stuff base advice on personal anecdote. A good physician will take your health into account, your history into account, your age into account and look at the research. He or she will thoroughly explain the risks and benefits of mammography and may well tell you that screening every other year in your 50s and 60s will not increase your chances of dying of breast cancer (for reasons you can read about in my story), but will reduce your chances of over-diagnosis and harm from mammography.
Among the folks I quoted whom Ms. Meltzer apparently felt were non-progressive and unenlightened were Barry Kramer of the National Cancer Institute; Laura Esserman, director of the Carol Franc Buck Breast Care Center at the University of California, San Francisco; Susan Love, president of the Dr. Susan Love Research Foundation and author of the magnificent Dr. Susan Love’s Breast Book; Steven Woloshin and Gilbert Welch, colleagues and professors of medicine at the Dartmouth Institute for Health Policy and Clinical Practice. I also cited a survey on screening conducted by the Cochrane Collaboration involving 600,000 women around the world. Meanwhile, I have received positive feedback about the article from, among others, Otis Brawley, of the American Cancer Society (which I criticized in the article, so I'm particularly impressed that he was so open-minded); Susan Desmond-Hellman, the chancellor of UCSF (and an oncologist herself); V. Craig Jordan the "father of Tamoxifen" and Harvey Mamon, Clinical Director of the Department of Radiology at Brigham Young Women's Hospital/Dana Farber Cancer Institute .
As far as I can see, Ms. Meltzer herself, a TV producer, consulted no authority but her own as a patient.
That's where things get tricky. Ms. Meltzer writes:
Under those guidelines [i.e., mammograms every other year between 50 and 74 as recommended by the federal independent task force], I wouldn't have made it to that first appointment. I guess Ms. Orenstein would say I might of, and I should have, taken a gamble. After all, I had the good kind of cancer: Stage 1 DCIS (Ductal Carcinoma In Situ); or in layman's terms, the one that grows slowly.
I am very, very sorry Ms. Meltzer has had to go through any form of cancer diagnosis and treatment. I know, in the deepest possible way, what it means to have the rug of your life pulled out from under you. You never trust the ground you’re standing on again. Having had invasive breast cancer and then a recurrence I respect the fear women have of the disease. Whenever I develop a lingering cough out of nowhere I am afraid. Whenever I get a back-ache that doesn’t go away I am afraid. Because of my diagnoses my daughter and my mother are now considered high-risk (I have no sisters). Because of my extreme youth the first time around, my nieces, cousins and aunt are also on alert. So, a breast cancer diagnosis affects not only a woman herself, but generations of female relatives as well as all those (male and female) who love her.
That said, Ms. Meltzer does not seem to understand that there are many different kinds of breast cancer. Not only, as I explained in my piece, are there at least four kinds of invasive cancer, but there is an important distinction between various forms of DCIS, for which she was treated, and invasive disease. Ms. Meltzer writes that she was diagnosed with:
...the good kind of cancer: Stage 1 DCIS (Ductal Carcinoma In Situ); or in layman's terms, the one that grows slowly.
Those are only "laymen's terms" if you don't think laymen deserve accurate information. By definition DCIS is Stage 0 cancer, not Stage 1. In order for cancer to be “stage 1” it has to be capable of invading other tissue. DCIS is not and in many, possibly most, cases never will be. DCIS is a condition--really a pre-cancer--in which abnormal cells are found in the lining of the milk-producing ducts. In my piece I wrote:
Before universal screening, D.C.I.S. was rare. Now D.C.I.S. and the less common lobular carcinoma in situ account for about a quarter of new breast-cancer cases — some 60,000 a year. In situ cancers are more prevalent among women in their 40s. By 2020, according to the National Institutes of Health’s estimate, more than one million American women will be living with a D.C.I.S. diagnosis.
D.C.I.S. survivors are celebrated at pink-ribbon events as triumphs of early detection: theirs was an easily treatable disease with a nearly 100 percent 10-year survival rate. The thing is, in most cases (estimates vary widely between 50 and 80 percent) D.C.I.S. will stay right where it is — “in situ” means “in place.” Unless it develops into invasive cancer, D.C.I.S. lacks the capacity to spread beyond the breast, so it will not become lethal. Autopsies have shown that as many as 14 percent of women who died of something other than breast cancer unknowingly had D.C.I.S.
There is as yet no sure way to tell which D.C.I.S. will turn into invasive cancer, so every instance is treated as if it is potentially life-threatening. That needs to change, according to Laura Esserman, director of the Carol Franc Buck Breast Care Center at the University of California, San Francisco. Esserman is campaigning to rename D.C.I.S. by removing its big “C” in an attempt to put it in perspective and tamp down women’s fear. “D.C.I.S. is not cancer,” she explained. “It’s a risk factor. For many D.C.I.S. lesions, there is only a 5 percent chance of invasive cancer developing over 10 years. That’s like the average risk of a 62-year-old. We don’t do heart surgery when someone comes in with high cholesterol. What are we doing to these people?” In Britain, where women are screened every three years beginning at 50, the government recently decided to revise its brochure on mammography to include a more thorough discussion of overdiagnosis, something it previously dispatched with in one sentence. That may or may not change anyone’s mind about screening, but at least there is a fuller explanation of the trade-offs.
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. Meanwhile, D.C.I.S. patients themselves are subject to the pain, mutilation, side effects and psychological trauma of anyone with cancer and may never think of themselves as fully healthy again.
I can’t say whether Ms. Meltzer’s DCIS would ever have become invasive cancer. Neither can she. Neither can the current state of research. I also can’t say (nor can medical science) whether her disease, had it turned to invasive cancer, would have been aggressive or not, treatable or not, life-threatening or not. What I can tell you, based on data, is this: if screening worked as it should, for every case of DCIS or early stage cancer it detected there ought to be one less case of late stage disease. But that hasn't happened. Since screening was introduced, there has been no change in the incidence of women presenting with metastatic cancer (the kind that kills you) and little decrease in the incidence of those presenting with late stage disease. Which is how we know there is a vast amount of overdiagnosis and overtreatment going on as a result of screening.
That ambiguity, rather than my article, is what ought to make Ms. Meltzer angry. Instead of her relief at the apparent triumph of early detection--something that may or may not have made a difference for her--why not focus energy, effort and funds in part towards understanding DCIS better, towards figuring out who really needs treatment and who does not? I'm with Dr. Esserman on this one. I hope some day my daughter can look back at what is now done to DCIS patients the way I look back at the Halsted mastectomy--as something excessive and barbaric. And the reason it changed was that women's health advocates and cancer patients demanded it.
Dr. Esserman and I were featured on KQED-radio after my piece came out, by the way. We talk extensively about DCIS, so if you're interested take a listen here.
Ms. Meltzer accuses me of a kind of rebellious "nose-thumbing" at pink ribbon culture (Nancy Brinker also called my critique a "distraction" rather than engaging with it and considering how her organization could do better--very disappointing). I think I'm pretty clear in the piece about my concerns which are hardly immature. Among them: distorted information to women and girls that results in exaggeration of perceived risk and potentially poor health care decisions; corporate partnerships that create conflict of interests (or their appearance); deceptive statistics on the value of mammography; a limited percentage of funds dedicated to research (in Komen’s case, I report it was 16% of what they took in during 2011); marginalization of those with metastatic disease--the ones who will actually die of cancer. Beyond that, I report on which research is currently underfunded and needs our attention.
But I can't reiterate in a blog post what took me months to write.
I do want to express support for Ms. Meltzer around mastectomy and reconstruction, which she implies she went through. It’s not uncommon for a DCIS patient to end up with mastectomy, because the condition can be scattered throughout the breast. Reconstruction, as she says, is not the same as “a boob job.” It may look like a breast (or not, depending on the skill of your surgeon) but it has no sensation. Think of it as having a ball of socks appended to your chest. And again, since we can’t distinguish between threatening and benign DCIS, that means at least some women are going through that surgery that don't medically need it. And again, that is another reason we need to put our effort towards making change.
I also understand Ms. Meltzer’s concerns about her fertility. Chemo and Tamoxifen can both compromise fertility. That's a special concern for the minority of us who are diagnosed young. In part because of that (and in part because the research was not yet clear on its benefit to premenopausal women) I opted against Tamoxifen in 1997. Although I subsequently had a local recurrence, I don’t regret that decision. It made sense at the time—the chances this would happen were very small and the impact of the recurrence on my long-term prognosis (that is, my chances of dying) is slight. Having a mastectomy at 51 has been a lot less traumatic for me than it would have been at 35. Most importantly, retaining my fertility allowed me to conceive my daughter. At this point, I'm totally cool with my Tamoxifen-induced menopause. In fact, I'm relieved to be done with the whole peri thing.
Finally, Meltzer reduces my 6500 word piece to "irresponsibility" about mammograms and being “mad” at Komen. At first that made me angry. Then I realized something important: Tara Meltzer reminds me of my younger self, the woman I was at the time of my first, terrifying breast cancer diagnosis. Like her, I was angry back in 1997 lashing out in print when, just weeks after I started treatment, I saw the research suggesting women of average risk didn't need to begin screening until 50 (important note: we are talking about screening mammograms not diagnostic mammograms which are done when a woman or her doctor find a lump. Also, if you find a lump in your breast get to a doctor right now!!!). I opened my current piece by writing:
I used to believe that a mammogram saved my life. I even wrote that in the pages of this magazine. It was 1996, and I had just turned 35 when my doctor sent me for an initial screening — a relatively common practice at the time — that would serve as a base line when I began annual mammograms at 40. I had no family history of breast cancer, no particular risk factors for the disease
So when the radiologist found an odd, bicycle-spoke-like pattern on the film — not even a lump — and sent me for a biopsy, I wasn’t worried. After all, who got breast cancer at 35?
It turns out I did. Recalling the fear, confusion, anger and grief of that time is still painful. My only solace was that the system worked precisely as it should: the mammogram caught my tumor early, and I was treated with a lumpectomy and six weeks of radiation; I was going to survive.
By coincidence, just a week after my diagnosis, a panel convened by the National Institutes of Health made headlines when it declined to recommend universal screening for women in their 40s; evidence simply didn’t show it significantly decreased breast-cancer deaths in that age group. What’s more, because of their denser breast tissue, younger women were subject to disproportionate false positives — leading to unnecessary biopsies and worry — as well as false negatives, in which cancer was missed entirely.
Those conclusions hit me like a sucker punch. “I am the person whose life is officially not worth saving,” I wrote angrily. When the American Cancer Society as well as the newer Susan G. Komen foundation rejected the panel’s findings, saying mammography was still the best tool to decrease breast-cancer mortality, friends across the country called to congratulate me as if I’d scored a personal victory. I considered myself a loud-and-proud example of the benefits of early detection.
Sixteen years later, my thinking has changed. As study after study revealed the limits of screening — and the dangers of overtreatment — a thought niggled at my consciousness. How much had my mammogram really mattered? Would the outcome have been the same had I bumped into the cancer on my own years later? It’s hard to argue with a good result. After all, I am alive and grateful to be here. But I’ve watched friends whose breast cancers were detected “early” die anyway. I’ve sweated out what blessedly turned out to be false alarms with many others.
Recently, a survey of three decades of screening published in November in The New England Journal of Medicine found that mammography’s impact is decidedly mixed: it does reduce, by a small percentage, the number of women who are told they have late-stage cancer, but it is far more likely to result in overdiagnosis and unnecessary treatment, including surgery, weeks of radiation and potentially toxic drugs. And yet, mammography remains an unquestioned pillar of the pink-ribbon awareness movement. Just about everywhere I go — the supermarket, the dry cleaner, the gym, the gas pump, the movie theater, the airport, the florist, the bank, the mall — I see posters proclaiming that “early detection is the best protection” and “mammograms save lives.” But how many lives, exactly, are being “saved,” under what circumstances and at what cost? Raising the public profile of breast cancer, a disease once spoken of only in whispers, was at one time critically important, as was emphasizing the benefits of screening. But there are unintended consequences to ever-greater “awareness” — and they, too, affect women’s health.
(Another note: fact-checkers can be infuriating sticklers. You may notice that in this post I have said I was diagnosed in 1997. That's true. But I had that first mammogram in mid-December 1996. So we had a big fight over which date was correct and they over-ruled me and said since I'm talking about the mammogram it needs to be 1996. Confusing, I know.)
I wrote that first piece out of fear and shock over my cancer diagnosis rather than striving for a true understanding of research, nuance, and public health. Parts of that piece are solid--especially my description of what it feels like to be a young woman diagnosed with a potentially lethal disease. I'm less happy with other aspects. I hope, over time, that Ms. Meltzer will realize she was wrong as well and that she will put her efforts—her time, her talent, her money—towards doing the work that really needs to be done.
As for HuffPo: I don't really get it. When I write an editorial for a newspaper--the LA Times, the New York Times, USA Today--there is at least some editorial process in place to make sure that what I write as "fact" is indeed "fact." They may have different standards for proof, but proof is required. As a credible news outlet it seems you should do the same. You publish Susan Love and Fran Visco. Why this?
Finally: while I'm writing such a long post, I'd like to apologize to all of you who have written to me about this piece. I've been deluged with email and simply been unable to keep up. Some day I hope to write back, but if I don't, it's not out of lack of appreciation.
(The Cancer Song by Larry Brewer)
In an earlier post, I wrote about Rose Kushner, wondering why her name and voice had been sidelined in the story of breast cancer activism. If anyone could be considered the heir to Kushner (insomuch as I understand her story), it is my friend and inspiration Barbara Brenner. Barbara put up her final "Healthy Barbs" blog post earlier this week. I will miss her fierceness, passion and uncompromising intelligence. I got to know Barbara as the head of Breast Cancer Action; back then, as I recall, the organization’s motto was, “The Bad Girls of Breast Cancer.” I liked that.
It often took me years of conversations to catch up with Barbara's thinking. She was the one who first talked to me about the over-promise of mammography. She also talked about the lack of centralized data on cancer patients and cancer research. That just sounded wonky to me, ut now I finally get how critical that work is.
Barbara may be best known for coining the term “pinkwashing" (again, years before anyone really "got it."). Pinkwashing is when companies claim to care about women and breast cancer by sporting the pink ribbon while at the same time producing products linked to the disease or other threats to public health. There are legions of examples. In my recent Times article I wrote:
Having football teams don rose-colored cleats, for instance, can counteract bad press over how the N.F.L. 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.
Barbara was first diagnosed with breast cancer in 1993 at age 41; about three years later, she had a local recurrence. Then, after fifteen years of breast cancer activism, she contracted another disease--ALS. Often (and incorrectly as she would tell you) called “Lou Gherig’s Disease,” ALS is a fatal degenerative neuromuscular illness. Barbara wrote a post about this outstanding PSA, put together by supporters of football player Steve Gleason to raise needed awareness, and how it differed from the typical pink-ribbon feel-goodism:
Discussing the two illnesses on her blog, “Healthy Barbs,” Barbara wrote:
The issues are both different and remarkably similar.
How I think about this illness and how I react are influenced by my years as a breast cancer activist. How people deal with me now makes me think about how people deal with others who are ill. The purpose of this blog, Healthy Barbs, is to encourage people to learn to think in new ways about illness and health and to prompt them to be critical of the mainstream coverage of health issues.
It’s not meant to be comfortable. It’s meant to make people THINK!
That is Barbara: it's not about making nice. It's about understanding, thinking, getting stuff DONE.
The last communication I had from Barbara was on May 7 in the comments to my previous post about Nancy Brinker's 64% pay raise. Barbara wrote: “Actually, Brinker is still the CEO. She will have that title untl Komen hires her replacement. Who in their right mind would take that job if Brinker is still involved? Got me.”
On May 8, just one day later according to her Caring Bridge site, Barbara decided to stop taking nourishment. She continues to take liquids.
I hope she won’t mind that I’m copying part of her final post here:
I have been blessed to lead a rich life, full of love and culture and travel and work that had meaning for me. I have no regrets except that I got ALS in the first place.
I have met amazing people both in person and on-line. Everyone I have come in contact with has had something unique to offer the world. The world is a better place because these people are or were in it. Some of these people I have mentored (and you know who you are), others have taught me. What I know about all of these people is that I have been blessed to know them, and that they will succeed at what they set their hearts and minds to do.
In the Jewish tradition there is a Priestly Blessing. I copy below it because it is what I wish for all readers of these words:
May the Lord bless you and keep you; May the Lord make his face shine on you and be gracious to you; May the Lord turn his face toward you and give you peace.
Barbara, you have made a difference in my life--and in that of so many others--as well as in my work. Your voice and spirit will always be in my heart. I love you. I will miss you.