More on Mastectomy, Accurate Information and Treatment Choices

I’ve been camping since last Saturday, so wasn’t here when my story on contralateral mastectomy was published in the New York Times.  In its aftermath, I’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 Love’s Breast Book (bible for the newly diagnosed) and medical director of Dr. Susan Love Research Foundation. The blogger who goes by The Risky Body also wrote two really thoughtful responses  aimed at--though not exclusively for--the community of women with a known BRCA mutation. I’ve  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.

I’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 this one on Slate, and this one on Forbes. So for them, in particular, there are some things that I’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!) there was not a similar uptick of CPM in Europe over the time period studied. It’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,” she says. MRIs may detect additional areas of breast cancer that are missed by mammography, but the rate of false positives is quite high. “If the MRI finds something that looks suspicious, many women say, ‘I would rather just have a double mastectomy than go through the process of having biopsies on my other breast.’

Another reason, is that choices are not made in a vacuum. They are made in a cultural, political and economic context.  As I wrote in my New York Times Magazine piece last year (and Karuna Jaggar wrote this week, in the piece linked above), 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 harm—such as over-screening and over-diagnosis—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 can’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 Tuttle’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? That scares me. And it’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, “CPM is a futile procedure in terms of prolonging life.” 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. That’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, I’d like newly diagnosed women to know that I don’t feel at all “unbalanced” 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 on—including scoop necks and low-cut bathing suits--you can’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 I’ve had two biopsies on that side (both turned out to be--guess what?--not one but TWO rare surgical complications….). Also, again in the spirit of full disclosure, my previous radiation compromised the nipple-sparing surgery, so while I have a nipple it doesn’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 weren’t true, you’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, there’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. I’m happy to show mine (but only in person—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. I’m not here to litigate anyone’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 don’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 would’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, isn’t it? Women at average risk do not have to fear keeping their healthy breast when diagnosed with cancer. I’m so grateful for that for the sake of anyone diagnosed in the future. And again: shouldn’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,  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.

Increasing rates of CPM among women with DCIS

CPM among women with sporadic breast cancer

Increasing use of CPM among Breast Cancer Patients: A Trend Towards More Aggressive Treatment

Dana-Farber study on young breast cancer patients  over-estimating the benefit of removing the second breast.

Preventative Mastectomy Does Little to Increase Life Expectency (CBS News)

Tara Parker Pope on CPM

An interview with Steven Katz

The Cost of Peace of Mind

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.

140 Characters Isn't Enough to Say I'm Sorry

So I am in the Twittersphere dog house and, it seems, justifiably so. It’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 Keller’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 —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 don’t “do everything” 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 “giving up.” She was not seen as brave or heroic or self-determining. Years later I bumped into a mutual friend who still referred to  this woman as someone who “gave up the fight.” 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 “heartfelt misinformation” spread by Amy Robach in the wake of her cancer diagnosis. I wish her well, of course I do. I mean obviously. Unfortunately—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.  I apologize to her for thoughtlessly piling on. Again, I refer  to Gayle Sulik, who  wrote her own piece about the Keller-Adams controversy that says it all.  

Some have accused me of backing “team NY Times” in this debate because of my relationship there. Let me give you a little inside baseball: while we  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 “the team” situational, depending on whether we reflect well or poorly on the corporation. Nor do I know Bill Keller personally, at least I don’t recall ever meeting him (so please don't tell me that I did in 1988 and just forgot). I do, however, know  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 she’d been through the surgery I was facing—the DIEP-flap reconstruction—and offered herself as  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 didn’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 can’t take things back. I would have done this differently. It’s a lesson learned.

My BRCA Story Testing-I Finally Read it, Maybe You'd Like to As Well

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

By Peggy Orenstein

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."

What’s Next

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.

More on My Story and Why My Reconstruction is Not a "Sexy Boob Job"

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.

Be well.

Image 2This is what my  cancer looks like under the microscope. Weirdly pretty, isn't it?

This is the Woman You Want as Your Doctor

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.

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!) :


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

Even More Thoughts on Angelina, Me and You

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.

On Irresponsibility, Pseudo-Journalism and Women's Health

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): 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)

A Tribute to Barbara Brenner: A True Shero

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.

During her tenure at Breast Cancer Action, Barbara launched the high-profile “Think Before You Pink” campaign. She was also featured in the recent documentary, Pink Ribbons Inc.

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.


This picture taken from KQED-radio's "Perspective" series page; Barbara recorded an amazing piece in 2011 called "I Have a Voice"

Did Nancy Brinker Deserve a 64% Pay Raise?

Update: Ok, I changed the headline to this post because it was distracting people.  The new financials for Susan G. Komen for the Cure are out. According to the Dallas News, in 2012, the same year that the organization was roiled by the Planned Parenthood scandal (under Nancy Brinker's leadership and based largely on her say-so), the same year Brinker was forced to step down as CEO in an attempt by the organization to regain public trust, the same year donations dropped as a result of her miscalculations, Komen also gave Brinker  a 64% pay hike--from $417,000 to $684,717. Does that make sense?

Just so you know, a Charity Navigator survey found the median salary for the CEO of a not-for-profit organization to be $132,739.

Also, since Brinker is no longer the CEO of Komen, what is she doing in her "new role" for that kind of dough?

In case you've forgotten, the percentage the organization dedicates to research went down from 29% of revenues in 2008 to 15% in 2011.

I wonder, are the well-meaning Komen supporters "aware" of this?

I  do not want to be perceived as encouraging people to abandon breast cancer as a cause. Quite the opposite. I want your good will, effort, time and money to matter to a disease that has touched so many of us. Please let Komen know what you think about their skewed research allocations and Brinker's inexplicable pay hike. Contact them on Facebook tweet them at @komenforthecure Write or call them at :

5005 LBJ Freeway, Suite 250 Dallas, TX 75244 (1-877-465-6636)

You can change this.

And check out the good work of some of these other groups: Breast cancer Action; National Breast Cancer Coalition; Breast Cancer Consortium; Breast Cancer Fund; Susan Love Research Foundation.


Nancy Brinker from the Dallas News: Talking pink, earning green.

"Hippest Town in NJ" Doesn't Read the Bleeping New York Times!

I just got this press release. Made my jaw drop. Did they not know who they were writing to?  I get that Thomas could have missed  my blog post about this event. But come on, Dude. You're in New Jersey. You're a PR guy. The New York Times is your local paper. So let's give him some publicity--feel free to email Thomas at the linke below and tell him what you think of "paint your town pink." I responded by sending both the above links with this note:  "You are REALLY writing to the wrong girl. I think you are wasting people's time and money without doing anything to help eradicate breast cancer."  

From: "Thomas Paolella" <> To: "Thomas Paolella" <> Sent: Thursday, May 2, 2013 1:00:56 PM Subject: FW: Giuliana and Bill Rancic are coming to NJ to discuss the importance of mammography

Just a reminder about Saturday’s event. If anyone from your outlet is able to attend and share in this special evening we would love to have you.


Hi there – I wanted to invite you or someone from your team to cover a truly inspiring event for your publication. I know you don’t traditionally cover local NJ events, but this is something truly newsworthy to a nationwide audience.


In just a few short weeks, Meridian Health will host its annual “Paint the Town Pink.” For the seventh straight year, volunteers, committees, businesses, physicians, and local officials will make this event a reality. Everyone joins forces for one common goal; to raise awareness of the importance of annual mammography. Beginning May 1, Paint the Town Pink will cast a wider hue across our area with an expansion that now includes 23 Monmouth and Ocean County towns, making the event the most represented to date. What began as an idea seven years ago has been transformed into a grassroots initiative that is changing lives in very tangible and meaningful ways.

Paint the Town Pink was started by Riverview Medical Center with the goal to encourage women aged 40 and older to pledge to have their annual mammogram, as well as raise funds to provide mammography to the uninsured and underserved in our community. Through a variety of special events and in-store specials from hundreds of businesses, and involvement from community groups, this year’s Paint the Town Pink will be “bigger and Pinker” than ever before!

Last year’s campaign featured the “Men in Pink” and highlighted the men that support the women in their lives. Bill Rancic came to Red Bank, NJ and gave a talk about how he supported Giuliana during her breast cancer diagnosis. Bill had such a positive experience with Paint the Town Pink that for 2013, Giuliana will be coming with Bill and are hosting an event together titled “Little Things” – flyer below. There will be a Pink Media Lounge at around 7:45 p.m., in which members of the media will have full-on access of both Giuliana and Bill and will be able to ask questions, take photos/video, etc.

For more information please visit I thank you in advance for your consideration. I know you get pitched stories all day long and I appreciate you taking the time to read this. Even if you’re not able to cover the event, a brief mention on your website would go a long way in helping to spread the Paint the Town Pink mission. I know the event is on a Saturday, but it will be well worth it.


Thanks again,



Tom Paolella Public Relations Manager Riverview Medical Center Bayshore Community Hospital Office: (732) 530-2282 I Cell: (848) 203-7596


Make Komen Feel the Squeeze....

I was tempted to headline this "Komen: What a Bunch of Boobs!" But that seemed in poor taste..... In my piece in last Sunday's NY Times Mag I wrote that after our interview (interesting timing) Komen finally took off its homepage the misleading stat about the benefits of mammography.  Steven Woloshin and Lisa Schwartz had called them out originally in their excellent "Not So" series in the British Medical Journal. According to the ever-brilliant Gayle Sulik at Breast Cancer Consortium, however, you can still find the stat displayed elsewhere on Komen's site.

Maybe the PR folks just overlooked this one instance as they hastened to expunge the embarrassing evidence of science denialism from the site. But Sulik notes,

As Komen’s bold messaging continues to be erased from its materials if not from collective memory, is it enough for the group to simply step back and quietly disassociate from a misinformed pro-mammogram campaign?

Yeah-what she said! How can Komen deflect, disassociate from and deny the impact of their role in over-selling mammography when, according to Sulik's "short list" they continue to perpetuate it in their  "educational" materials and affiliate messaging (she points to such items as  "Early detection of breast cancer saves lives and thousands of Orange County women," and “Komen Austin was able to fund over 3,000 mammograms. I think of that as 3,000 lives saved.” ). Click over to the blog post yourself to read what Nancy Brinker just won't stop saying......

Komen is not getting the message. A friend who attended the White House Correspondents' dinner last week told me Brinker was there (don't know why...) and commented, "We'll soldier forward despite the critics." How about learning from a critique, using it to make a better, stronger, more effective organization? On our joint appearance on KQED-radio's Forum last week, after Dr. Laura Esserman urged advocates and the public not to be afraid of change, Komen's representative immediately disengaged by listing  the positive things the organization has done. She clearly has her tried-and-true sound bytes and wasn't going listen, only, like Brinker herself, try to duck criticism by playing the victim.

If you are a Komen supporter--or even if you're not--please keep the pressure on them to provide a truly balanced view of screening, to stop pinkwashing and to put more of their research money--more of ALL their money-- towards prevention, environmental links to cancer, the mechanisms and treatment of metastasis, better understanding of DCIS, social inequities and on and on. Tell them what they've allocated isn't enough.  Meanwhile, there are other groups who need your help--Breast Cancer Consortium, Breast Cancer Action, National Breast Cancer Coalition, Breast Cancer Fund, Susan Love Research Foundation. See which of those moves you and jump on board. 

As Sulik writes:

Mammography has been the rallying cry for breast cancer awareness for decades. And, it has helped to build an economy that focuses not on primary prevention but on the management of risk.

Time to make a change.



Photo: "This Elixir Won't Fix Her" by Torrie Groening. 

Update: More Komen deflection evident in the comments of this Reuters post on my piece. Really smart responses following....

Forget Pink--Remember Rose

There were a couple of things that got cut from my New York Times Magazine piece on breast cancer  that I wish I could've squeezed in. One is kind of wonky, which is why it was dropped, but super important. It's about data collection, based on a discussion I had with Dr. Peter G. Bach at Sloan-Kettering:

It surprised me to learn how little cancer data the U.S. collects, though it is  vital to improving treatment. We know how many cases of cancer there are and the stage of diagnosis, but unlike Scandinavian countries, we don’t keep track of which therapies are used or what happens to patients over the long-term. 

I could write a whole piece on publicly accessible, non-proprietary data collection and why we need to do it. But I just wanted to at least put it out there. Breast Cancer Action talks a lot about this one, and they are right. BCA is  also leading the charge against the pernicious practice of gene patenting, which was just argued in the Supreme Court. Gayle Sulik discusses this one beautifully in a recent blog post on Psychology Today's site

The other thing that got cut was a bit of history on the divergence in the strands of the breast cancer movement. Again, I only had so much space and a lot to cover, but I think useful in thinking about one's choices when considering supporting various groups. Here's an excerpt (which never even got to the point of being fact-checked by the Times--it was really a draft):

It is hard to remember now, but until the early 1970s breast cancer was the Voldemort of diseases, its name never spoken aloud, omitted from a woman’s obituary. If you found a lump, you obediently submitted to the surgeon’s table: maybe you would wake up with a small incision from a biopsy that turned out to be benign. Or you would find yourself mutilated without your knowledge by a Halsted radical mastectomy, the standard treatment of the day, in which the entire breast, chest muscles and lymphatic tissue were removed. Either way, you were expected to keep your experience, and feelings about it, to yourself: to pull up your socks—or shove them in your bra—consider yourself lucky to be alive and get on with it.

That began changing in 1973, when Shirley Temple Black, the former child star, went public with her breast cancer in McCall’s magazine. The following fall, First Lady Betty Ford talked publicly about her diagnosis (as did Second Lady Happy Rockefeller, who was diagnosed two weeks later). By 1976, Betty Rollin’s memoir of her struggle with the disease, First, You Cry, became an international bestseller (and later a TV movie starring Mary Tyler Moore). And with that, a stigma was shattered.

Temple, Ford and the rest made telling one’s personal cancer story socially acceptable, even, in their defiance of shame, vaguely political. However, they didn’t question medical or scientific authority. That role fell to the nascent feminist health movement, and, specifically, a journalist named Rose Kushner. Kushner was diagnosed the same year as Betty Ford; through mutual friends, begged the First Lady to resist the paternalistic, one-step procedure for biopsy and mastectomy. Ford refused, saying, “the President has made his decision.”

Kushner spent the rest of her life—which would turn out to be sixteen years—challenging the medical establishment. It was Kushner who, undeterred when she was booed off the stage during a meeting of the Society of Surgical Oncology, fought, ultimately successfully, to separate a biopsy from cancer surgery; it was Kushner who fought to replace the radical Halsted mastectomy with one that was less disfiguring yet equally effective. And it was Kushner who started the first breast cancer information hotline that was run by women and for women.

There are now hundreds of breast cancer advocacy organizations and those two early strands sometimes overlap, but, as Gayle Sulik, author of Pink Ribbon Blues, has pointed out, the fundamental philosophical division between those who challenge the medical status quo and those who promote it persists. It can be seen in debates over how (and from whom) funds should be raised, how that money is dispersed, and what, precisely, “awareness” should encompass. Heirs to Kushner’s oppositional stance tend to reject the pink ribbon. They push for lay-person involvement in grant-making decisions. They question the efficacy of both treatment and diagnostics. They see potential conflicts of interest in partnering with corporations or Big Pharma. The most well-known include the National Breast Cancer Coalition, which since 1992 has lobbied Congress for $2.8 billion in funds for the federal Breast Cancer Research Program overseen by the Department of Defense; Breast Cancer Action, an industry watchdog group best known for coining the term “pinkwashing”; and the Breast Cancer Fund, which focuses on potential environmental links to the disease.

Komen, meanwhile, is heir to the Betty Ford model--they speak out, yes, but they don't truly challenge. They embrace private sector solutions, partnerships with corporations and organizations, including, as I say in the piece, those that harm public health:  Chevron. Frackers. I care about breast cancer, passionately, but not at the expense of larger issues of public health. I am a fan of Breast Cancer Action's Think Before You Pink campaign, which coined (I think) the word "pinkwashing."

Ultimately, I think the pink ribbon with its assurances of hope and progress lull us into thinking enough is being done. It lulls us into thinking we can keep ourselves safe. It silences us in the name of voice. Meanwhile, women die. Meanwhile, women are over-treated, destroying their lives and well-being. Women with DCIS, rather than being celebrated as triumphs of early detection, should be FURIOUS that they will never know if their treatment was necessary or not. Rather than thanking pink ribbon culture, they should be protesting its complacency and myth-mongering, bringing their pressure to bear on making change so their sisters, mothers, nieces, daughters do not have to go through the uncertainty that they did.

I am sobered and inspired by Kusher's example. She, too, is a journalist, diagnosed young with cancer. She stood up to the status quo, stood up to ridicule, refused to yield to "good enough." I don't know why she has been virtually lost to history--I had never heard of her until I started reporting this story. Maybe there is more there than I know. But it seems to me that it's time to bring her back.

I don't stand with pink--but I do stand with Rose.

(photo from

It's True: I Was Rescued By a Prince

My cover story in the New York Times Magazine is up: it's called "Our Feel-Good War on Breast Cancer." As a journalist I write about all kinds of things for all kinds of reasons. Sometimes I write for fun. Sometimes I write because I have a great story to tell. Sometimes I write to pay the rent. Sometimes I write because if I don't say something about something I see as wrong I will absolutely explode. This is one of those. And it won't make you feel so good. That said, I do want to share another story that didn't belong in that piece, that has not so far belonged in anything I've written but that truly is a feel-good cancer anecdote: it's about how amazing and wonderful and compassionate people can be.

The background: In case you don't know, last July I found a lump in my breast; it turned out that the cancer I had 15+ years ago had returned.

I know. Fifteen years later!

But I’m so very lucky—the kind of cancer I've had is low grade, slow moving and unlikely to have spread. While there are no guarantees, my odds of surviving, with surgery and a five year course of  Tamoxifen, remain pretty damned good. 

Unfortunately, another lumpectomy would require more radiation. Since  you can’t irradiate the same body part twice my only option was a mastectomy. Radiation also destroys the elasticity of your skin, making reconstruction with an implant a challenge. I considered just going flat, but  I felt that for me, reconstruction would make it easier going forward.

My best option was something called a DIEP-Flap Reconstruction in which the docs take the fat from your belly make it into a breast. The upside is that the reconstruction is your own flesh (and yeah, there's my newly flat stomach....). The down side is that it’s a BIG honkin’ surgery involving a week on your back in the ICU and a looooong recovery at home. And, of course, as with all reconstruction it has no sensation. I don't know why no one seems to mention that. It feels more or less like a ball of socks appended to my chest wall.

Anyway, I have a lot to say about reconstruction—the pros and cons of it, the weirdness of coming out of all of this looking better than when I went in, what it’s like to have a NEW BELLYBUTTON (they removed the old one—if they didn't put another in I’d look like a space alien) but I’ll save that for another time. I’ll also save for another time a discussion of the loathsome new “reconstruction awareness campaign” (read the brilliant Gayle Sulik on them instead).

So, here is what I wanted to say today:

This procedure, this DIEP thingamabob, is highly specialized microsurgery. Not a lot of docs do it. The two who were most highly recommended to me were both outside my insurance network. The first one said, Well, you’ll have to pay the difference out of pocket but we can work out a payment plan. It would cost me roughly $20,000. I didn’t want a boob that badly. Still, it was extremely upsetting to think it wasn’t a choice but financial necessity.

Hello, American Health Care System. Never think it can't happen to you.

Oh, wait--this is a feel-good story.

Enter doc number two. I’m not sure he’d want me to name him so I won’t. Just think of him as Prince Charming. When I told him about my insurance woes Dude didn’t skip a beat. "Don't worry about it," he said--he'd take whatever the insurance gave him as full fee.

At first I didn't think I'd heard right. “Why would you do that?” I asked. 

“Because," he responded, "it’s the right thing to do.”

This guy doesn't know me. He didn't know what I did for a living or who I work for (that is, he wasn't angling for media coverage). HE'S JUST A MENSCH.

Are you tearing up? Because I did.  

We shouldn't have to depend on random acts of kindness in health care, but that's where we are. That's where I was. And as horrible as having cancer again has been, as difficult as the surgery was, I felt blessed the entire time by the generosity and compassion of this man. Cancer is not a gift, not at all, but he was.

Sometimes, you really can find a Prince.


The Plastic Surgeons Threw a Party and All I Got Was This Lousy Boob

Nancy Stordahl wrote a great piece this week on HuffPo about the dubiously named “BRA Day,” a new national, um, holiday, embedded in Breast Cancer Awareness month (let’s put the discussion of that aside for now) which is designed to educate women on reconstruction options after breast cancer. BRA Day even hired their own celebrity spokeswoman, the singer Jewel, who wrote a song, “Flower,” for the occasion.

Now, I am deeply grateful to have had the option for reconstruction, which U.S. health insurance already has to cover by law. And I am grateful that I could have a type of reconstruction that was possible despite my previous radiation therapy, which wreaked havoc with my skin elasticity. I’m even abashedly pleased that the kind of reconstruction I had—using my own belly fat—had the bonus side effect of leaving me with a much flatter stomach. What the hell. I might as well get something out of it, right? Because part of what won’t be discussed on BRA day is that reconstruction can be absolutely brutal to go through. Also, no matter how great the result, it’s only cosmetic—you don’t get sensation back. It feels a bit like having a folded up pair of hiking socks attached to your chest.

I have friends who have done reconstruction and those that have not and both have their reasons. It’s a personal thing and both options should be respected—if they truly are freely chosen. It seems to me, too, that everyone is equally happy and equally unhappy with what they did as time goes on. There is no perfect solution.

Nancy points out that BRA Day (an acronym “that sounds patronizing and trivializing and somehow puts the main focus once again on saving breasts not women's lives”) is part of a larger attempt to pass a bill called the Breast Cancer Patient Education Act  which would require the Health & Human Services Department to create an education campaign for mastectomy  about reconstruction options, availability and coverage rights. Which sounds good, until you consider that the bill’s primary backers seem to be plastic surgeons:

While I do hold my plastic surgeons in the highest regard, it doesn't feel quite right to me for others in their profession to be so strongly backing a bill that if passed will result in further lining their pockets. Even if this is not their intent, it certainly can be construed this way. It seems like a conflict of interests to me. seems to me doctors should be responsible for directing their breast cancer patients in regard to educating them about all their reconstruction options, not legislators. If doctors are not doing their job here, we have bigger problems

Finally, my biggest problem of all with this proposed campaign is its exclusion of too many women. I say what about the under-insured and the uninsured?What about their reconstruction rights? There is so much disparity with all aspects of healthcare in this country and this is one more instance where this disparity is being swept under the rug.

If the backers of this bill and BRA Day wish to get behind every woman in the United States who has had breast cancer and wishes to have reconstruction options offered to her, then I'm all for it. Until then, no thank you.

I'd go a step further. Even when, like me, you do have insurance coverage the procedure can be prohibitively expensive. I was lucky. The two surgeons who could perform my reconstruction, a type that involves microsurgery and is still relatively rare, were out of my insurance network. There was no way I could afford that. Or perhaps more accurately, no way I would. My family has needs more pressing than my new boob. But it sure didn’t make me happy. In fact, I was distraught. Not only did I have a recurrence of my cancer, not only did I need a mastectomy 15 years after I thought I was done, but now I couldn't afford the only method of reconstruction open to me.

Then one of them said, unbidden, “You know what? I’ll take whatever your insurance gives me as full fee.”

“Why would you do that?” I asked.

“Because it’s the right thing to do,” he responded.

I burst into tears. Wouldn't you?

What a mensch. Also, and I don’t think this is coincidence, he is Canadian. Our health care system probably just seems whack to him.

By the way, I’m still fighting with the other guy, by the way, over the cost of his “free” consultation that somehow has resulted in a $344 bill.

Even with all of that, even with my doc’s generosity, the whole enterprise cost me $8,000. That’s right, $8,000. It’s not the difference between eating and not eating—more like putting off the renovation of our  60 year old kitchen, hanging onto our twelve-year-old cars. A little belt-tightening. But still. My husband and I are both self-employed, so that $8k is on top of our Blue Shield insurance premiums which have spiraled up 30% a year for three years. Even after downgrading our coverage we’re paying way, way more for less.

That said, if I were uninsured, I’d be screwed. My hospital bill alone was—wait for it--$135,000. That’s right. All them zeroes. So rather than BRA Day how about those plastic surgeons back an “astronomical cost of medical care that makes it out of reach for all but the rich day?” Hey Jewel, why don't you write a song about that?

Or what if all those plastic surgeons who promote BRA day marked it by pledging to do a certain number of reconstructions this year for free or at cost?

What do you think, Nancy? For that would you be willing to say “yes, please.”

Memo to the "Hippest Town in NJ:" Please Stop Painting Yourself Pink

Over the past couple of months, I tried to get a number of editors to bite on this story: the town of Redbank, NJ (which calls itself "hippest town in NJ" thereby, ipso facto, making it not) has painted itself pink "to raise awareness of the importance of breast cancer prevention, detection, and treatment." I wanted to take apart the whole premise, possibly doing an annotated "memo" of its press release a la Harper's. Couldn't get anyone to go for it. I was reminded of the concept again today by Anthony Moro, husband of Rachel Cheetham Moro, the  author of The Cancer Culture Chronicles blog (and inspiration to activists everywhere) who died earlier this year of breast cancer.  Rachel died in the hospital sponsoring this event. And she would have hated. it. As Anthony writes on the blog, "painting the town pink":

...doesn't help prevent death from breast cancer. More mammograms don't lower mortality, awareness doesn't cure disease. Mammograms and awareness certainly don't help anybody dealing with advanced disease. Mammograms and awareness don't provide any comfort from my grief, and their pink flags mock me daily.  This stuff is in my face every day, and now it has a gala reception and celebrity appearances.

He is absolutely right. I have written this and written this over and over. Those of you interested in more effective breast cancer advocacy might want to check out Breast Cancer Action or the National Breast Cancer Coalition. Meanwhile, for the record, blow  is my hall-of-shame annotation of the Redbank press release. And here is Rachel's post on last year's "Paint the Town Pink."


Hi there –

I know you don’t traditionally cover local NJ stories, but this is something truly newsworthy to a nationwide audience, and any help in spreading the message would be much appreciated. Paint the Town Pink is a community-wide effort presented by Riverview Medical Center in Red Bank, NJ to raise awareness of the importance of breast cancer prevention, detection, and treatment.

They say they are raising “awareness.” Of what? Well, number one, they say of how to prevent breast cancer. If they know how to do that, give them the Nobel Prize immediately: there is no scientifically proven way to prevent breast cancer. There are some things that may reduce risk—such as limiting alcohol consumption, avoiding hormone replacement—but prevention? Nope. They seem to be making the common (and detrimental)  mistake of indicating that mammography prevents cancer. It doesn’t. It detects cancer.

Red Bank, in Monmouth County NJ, is regarded by many as "the hippest town in NJ."

Said it before: calling yourself "hip" makes you ipso facto not.

Downtown Red Bank is situated along the banks of the Navesink River where numerous rock stars and movie stars have made their home.

Perhaps some of those hip movie and rock stars will become “aware” of how they’re being used to spend misinformation about breast cancer and do something that actually makes a difference in the fight against the disease.

Six years ago, Riverview Medical Center set forth on a breast health crusade, directed at encouraging women, aged 40 and over, to have their annual mammogram,

The necessity and efficacy of annual mammograms for women 40-49 is highly controversial and does not appear to confer any life-saving benefit. In  2009, the United States Preventive Services Task Force  found that the risks of mammography outweighed the benefits for that age group its guidelines suggest that women in that age group who are of average or low risk discuss the value of their test with their physician. The unquestioning encouragement by Paint the Town Pink, however, would result in big profits for the hospital involved….

as well as to raise money to provide mammography to the uninsured and underserved in the community.

Okay, that’s nice, but more on this later.

 In conjunction with the Women’s Center at Riverview, the mission behind the Paint the Town Pink campaign was to educate women about a very significant fact: that early detection is a woman’s best defense against breast cancer.


Stop. Right. There. Early detection a “defense” against cancer? “Defense,” again, implies that it prevents the disease. At best mammography detects breast cancer (and it misses tumors in up to 20% of cases). No responsible authority would say the test prevents it.

But perhaps they mean that early detection is your best defense against dying of breast cancer? Well….maybe. Here's what's important to understand (and what I keep harping on in my articles): You have to look at the kind of cancer mammography catches as well its impact on that cancer. Mammography is very good at finding early stage cancers called Ductal Carcainoma in Situ --which would only become invasive (hence life-threatening) 30% of the time. Yet since medical science does not yet know which DCIS cancer will become invasive all are equally aggressively treated. That means 70% of women with this sort of cancer did not need the disfiguring surgery or radiation they underwent. Nonetheless, pink ribbon advocates count these women as success stories—“survivors” of a cancer that would never have killed them.

The second kind of cancer mammography catches is the one we hope for: the kind that, if caught early, can be successfully treated. For this segment, mammography does indeed save lives. Yay mammography!

The third kind of cancer is the most aggressive. No matter how “early” it’s caught by mammography it is too late. Mammography has had no impact on the death rates from this form of cancer, which is why the actual number of women (and men) who die of cancer today—about 40,000 annually, including Rachel Cheetham Moro—is greater than it was in the 1980s. While the overall death rates  as a percentage of those diagnosed has dropped (again in part because of mammography’s penchant for finding DCIS) The death rate for those with metastatic disease, the kind that will kill you, has not budged.

What started off as just one town (Red Bank), grew into three towns for 2011. For 2012, the number of towns has grown to NINE - making the 2012 event the most represented in the campaign’s history!


How nice: 9 towns now spread misinformation.

Many businesses throughout Monmouth County turn their towns into a vision of pink in May. They are enthusiastic about breast cancer education and gathering donations to help women who do not have insurance, or are under-insured. As a member of the Pink community, we have a unique opportunity to integrate this educational message into a woman’s daily routine as she shops and dines at the many businesses in these towns.

Swathing the town in pink and promoting mammography may not do much for women with cancer, but it’s a great way to boost profits for local businesses and make people feel good.

From high-end boutiques offering a “pink tag sale” on Jimmy Choo shoes, to restaurants offering drink specials and “pink menus,” to the Broadway Diner with a hand painted mural about mammography, these towns has embraced the event. We also strive to make the educational process fun through various events. Planned once again for this year is a community-wide kick-off event on May 5th called “Paint Everything Pink. This event draws more than 3,500 community members for a day of education and fun.

The growth of Paint the Town Pink into neighboring towns, the footprint extended in these communities, the expanding volunteer base, the compelling educational messages, the inspirational stories shared...

Pink campaigns tend to focus on what Gayle Sulik, author of Pink Ribbon Blues, calls the "she-roes" narrative: stories of warriors in heels who kick cancer's butt (and look fab doing it). She-roes say what people want to hear: that not only have they survived cancer but the disease has made them better people and better women. It almost goes without saying that they do not contract late-stage disease, nor do they die.

...the creation of the Pink Fund...

The Pink Fund? What does it do?

and the desire by people to be part of something authentic, tangible, and meaningful takes Paint the Town Pink beyond the pink.

People really do want to be involved in something tangible and meaningful. It’s too bad this campaign does not fit that criteria.

Beyond the visually pink landscape, Paint the Town Pink has brought families together, neighbors together, and businesses and communities together, while organically spreading a very important message. After five successful years of Paint the Town Pink activities, funding is now available to cover 250 free mammograms in 2012!

What happens if one of those mammograms finds an abnormality or, God forbid, cancer? Those women will need follow-up procedures, possibly surgery, possibly radiation or chemotherapy or more. If they are uninsured or under-insured who will pay for that care? Free mammograms are nice, but then what?


We Need Your Help!

You can help us remind women of the importance of their annual mammogram in a fun and positive way! The idea is truly scalable and customizable. Ideas range from “pale pink” to “fuchsia” in scale.  Here are some examples:

  • Dress a member of your media team in pink in support of our campaign
  • Broadcast the logo in pink
  • Develop medical features about the prevention, detection, and new treatments for breast cancer, and how just because Breast Cancer Awareness Month is not until October, it should not be forgotten about the other 11 months of the year


I agree. Breast cancer is an issue all year long.  But extending the dissemination of misinformation and profit-making should not be.


Disney Princess......Cancer?

According to a new report on bisphenol (BPA) in kids' canned food released today by the Breast Cancer Fund, Campbell's Disney Princess and Toy Story soups test highest for that toxin, which is typically used to harden plastic or make the linings of metal food cans. BPA has been linked to breast cancer, infertility and early puberty in girls, as well as prostate cancer in males and type-2 diabetes, obesity and attention deficit hyperactivity disorder in both sexes.

Isn't that magic?

According to the report BPA exposure is of special concern in children "because this endocrine-disrupting chemical can affect children's hormonal systems during development and set the stage for later‐life diseases."

Campbell's wasn't the only offender, nor was Disney. Even organic brands contain BPA, though in far less parts per billion (ppb): Earth's Best Organic Elmo Noodlemania Soup had 38 ppb (the Princess pasta had 114) and Annie's Homegrown Cheesy Ravioli weighed in at 31 ppb. Campbell's Spaghettios (with meatballs!) fared better than both at 13 ppb. According to William Goodson, Senior Clinical Research Scientists at California Pacific Medical Center Research Institute, who just last week published a study showing that BPA causes non-cancerous cells to grow and survive like cancer cells, "We're all part of a big experiment to see what BPA will do to our kids and us."

Not me, baby.

As a mom--and, hell, as a human being--I'm more disgusted than ever that these products, which claim overtly or subtly to be healthy for our kids, not only are loaded with sugar, salt and, often, fat, but now with carcinogens. And since the exposure is cumulative, eating a can or two of kid chow won't hurt you, but a lifetime of canned goods may be another story. If Disney and Pixar and Sesame Workshop care about kids the way they SAY they do, they should immediately insist on safer packaging or pull their licenses.

You may recall BPA as the stuff that was in baby bottles and water bottles. Public outrage--especially from parents of infants--encouraged manufacturers to voluntarily change that (although it's not always clear what they're using instead). 10 states have restricted BPA in baby food containers, though not in canned food. Meanwhile, the Canadian government declared BPA toxic in 2010, though it had already banned the substance in baby bottles two years earlier.

Rep. Ed Markey, D-Mass. has authored a bill that, if it passes, would ban BPA from all food and beverage containers. Meanwhile, better safe than sorry. Get your food fresh. Get it in boxes. Get it frozen. Get Tetra Paks. And when you can: can the can....

Here are Breast Cancer Fund People discussing the findings.

And here, in case you're interested, is a refutation.


I Heart This Campaign

I've been critical of the Keep-a-Breast Foundation's "I Heart Boobies" bracelets campaign. But I also am a person who gives credit where it's due, and I very much like the early style, tone and message of their non-toxic revolution campaign.

I especially hope they focus on educating girls about potential carcinogens in cosmetics--during and just after puberty they are especially vulnerable. And short of questioning the beauty industry  in general, I at least hope KABF can make clean makeup the cool choice. And I'm not talking Cover Girl Clean (for you who grew up in the 1970s).

So we'll see. I'm rooting for them on this one. Though it does seem ironic that all those bracelets will end up fill.

Ta-Tas Talk Back

Elizabeth Rosenberg of "Save the Ta-Tas" wrote to me with her critique of my recent Los Angeles Times editorial, "The Trouble with Those Boobies Bracelets." I told her I would post her response. So you'll find it below. But I still take issue: for one thing it says on the top of the site that a mere 25% of revenue goes to cancer-related causes. Compare that to National Breast Cancer Coalition where 86% goes to programs. So where's that other 75% going?

Elizabeth says:

"It pains me when I see that Save the Ta-tas® has been grouped with organizations that do very little to fight the war against cancer.    The ta-tas® Brand (est. 2004) and Save the Ta-tas® Foundation (est. 2008) were created by Julia Fikse, as a way to fight breast cancer using laughter and fun.  Julia’s message of hope and humor has reached thousands of victims and survivors of breast cancer and has helped them to fight the disease with both strength and courage. Members of Fikse’s own family have battled with breast cancer and were the inspiration for Julia launching this company and foundation.  (You can see that laughter really does heal here :,2933,458625,00.html)

Formerly a designer for Jessica McClintock, Levi and Adidas, Julia started Save the ta-tas as the perfect combination of fashion design and supporting a cause. UNLIKE ANY OTHER BREAST CANCER GROUP, The ta-tas® Brand donates nearly 50% of their profits to the cause and over the last six years has donated $650,000+ to fund the fight against cancer, including innovative cancer research.

The Save the Ta-tas® Foundation currently funds three independent researchers who are working everyday to find a cure (  The foundation is also in its 2nd year of an annual scholarship program where scholarships are given to high school seniors and college students who are currently battling or who have won the battle against cancer.  ("

Your thoughts?

Are You Racing for a CURE? Think again....

Just read on Komen Watch that only 15% of the money YOU give to/raise for the Komen Foundation goes to research. That's a REDUCTION of $17 million since 2010. It's also 4% less than the amount going to their administrative expenses. And the bulk? Goes to "education," which, guess what--nice but won't move that needle even a tiny bit closer to a cure. I think they might need to hear from us..... Here's a pie chart of last year's funding, thanks to The Cancer Culture Chronicles