I’m off to my college reunion and going on blog hiatus. See you!
Yesterday, in the comments section of this blog, I was reprimanded by a reader named Becca, a young woman with breast cancer who has chosen to have her healthy breast removed to reduce her risk of future disease. She took exception to my last post. I wrote a long response to her in the comments section, then realized I’d rather put that response here, where it’s more visible. Here is what Becca wrote:
Fear is not the only reason women get bilateral mastectomies. Younger women with breast cancer (like myself, diagnosed at 35) are more likely to have this surgery for a lot of reasons, such as:
* we have many more years of life to develop a new primary in the other breast. My surgeon, also at MSKCC, estimated my risk to be 25% or higher. (I’m BRCA negative)
* we want a symmetrical chest
* we want to lessen our need for additional surgeries in the future, which we would likely need to achieve symmetry as our natural breast aged.
I’m starting to resent this idea that women are getting too much surgery because we are uninformed, pressured by our doctors, or sniveling cowards. I’m part of a group of about 1000 young women who’ve had breast cancer. Most of us had bilateral mastectomies. None of us regret it. The women who do have regrets? Those who need constant monitoring of the “good” breast — which means every-6-month mammograms or MRI, and biopsies of anything suspicious. Those trying to get dressed every day while being very lopsided. But most of all, those women who end up developing a new breast cancer and have to go through surgery/chemo/radiation AGAIN. I think you’re downplaying how terrifying, disruptive, difficult and damaging this is to a woman.
Bilateral mastectomies are not the right choice for every woman diagnosed with breast cancer. But they were right for me, and for so many of my co-survivors. Please respect our choices too.
Also this: “Anyone can have body parts cut off.” What!? Really?
And here is my response:
Becca, I understand how emotional this issue is, believe me. I’ve been through cancer treatment twice, the first time at a very young age. In fact, I’m still in cancer treatment and will be until at least 2017.
I don’t think women who choose bilateral mastectomy are cowards. But I also don’t think they are heroes. Not even Angelina Jolie. Is she really braver than someone who opted for surveillance, or to have her ovaries removed? If so, why? So many of the choices we have with cancer are murky and lousy. My point in saying that “anyone can cut off body parts” was that if that’s where she stops it is really not enough. Rather than arguing, we who have faced this need to be agents of change, to educate ourselves as thoroughly as possible and push for better options for the next generation so they don’t have to go through what we did. I don’t want my daughter’s only choice, should they some day find a new genetic mutation that I have and, Heaven forbid, she has, to be the brave choice of surgery. I just don’t. Nor do I don’t want women to believe we can amputate our way out of an epidemic.
You may have made a fully informed choice to remove both breasts. I have a number of friends over the years who’ve made the same decision and they were also fully informed. But the research clearly indicates that many women–perhaps not you or your friends or my friends– are opting for bilateral mastectomies without an accurate understanding of their risk or education about what the procedure will and will not do for them in terms of future cancer. I can’t believe you would think that’s ok. Women (typically cancer patients are older than you or I) are estimating their risk of a new cancer over ten years to be 30% when it is closer to 5%. If they are basing surgery on that assumption, it is simply not informed choice.
It also worries–and, frankly, offends–me that Angelina Jolie’s reconstruction is being called a “boob job.” If you accuse me of playing down the disruptiveness of surveillance (though personally I never found it especially disruptive), I would say the far bigger danger at this moment is playing down the risks and realities of mastectomy.
Gayle Sulik writes about the aggressive publicity campaigns launched by some reconstructive surgeons since Jolie’s announcement. I have, as a journalist, experienced a similar onslaught and find it repugnant. These PR-releases also only discuss the positives. None mention women who after reconstruction suffer, as Sulik writes, “on-going pain and weakness, scar tissue, nerve damage, risks of infection and implant rupture, and other complications.” I’ve known many women with implants, which is what Jolie has and what you apparently have. Some are very happy with them as you are. They are lucky. Others have had constant issues and deflations and multiple surgeries and wish they’d never done it. Some implants look relatively natural. Others harden and look like bad porn star boobs. Flap surgeries, which I had, carry their own risks, of which I was informed.
What’s more, no matter how good-looking or symmetrical reconstruction may be, it is, essentially, a permanent prosthesis. A reconstructd breast has no sensation. You may look good in clothes and hot to others, but you will feel nothing when touched. It is the sensory equivalent of having a ball of socks on your chest. Why isn’t that out there along with Angelina’s “beautiful results” so women considering such surgery are fully informed? I find that when I tell my friends that my reconstructed breast is numb they are shocked: they had no idea that would be so. Just like they don’t know that breast cancer in your breast doesn’t kill you. Just like they don’t know that breast cancer doesn’t spread laterally. Just like they don’t know that lifetime risk is not the same as current risk. If you understand all of that, again, and you choose bilateral mastectomy, that’s fine. Or if mastectomy is required, as in my case, that’s the way it goes. But I am extremely concerned about misinformed decision-making.
Also, I’m sure you know that while you may not need surgery to adjust for sagging, implants tend not to last more than about 10-15 years. So, since you were so young, you will eventually need additional surgeries to replace the implants. Your implants may also get in the way of detecting a chest wall recurrence.
I was also diagnosed young: in 1997, at 35 years old. I considered mastectomy at the time, but since lumpectomy with radiation has been proven over and over to be equally effective (possibly more so) that was the direction I went. I did have concerns about the radiation at such a young age, and it wasn’t an easy decision.
I never considered removing my healthy breast (I tested BRCA-) although my risk of a new primary in my other breast was also about 25% over my lifespan. I figured that made my risk 13% higher than someone else’s over several decades. Which sucks, but then again, there was a 75% chance I wouldn’t get a second cancer. At that time I didn’t take tamoxifen, which would’ve reduced that risk considerably. The drug puts you into menopause, at least temporarily, and I wanted to have a child. Since my recurrence I have started taking it and it lowers that lifetime risk in the other breast to 12%–that of an average woman. You may have a more aggressive form of disease than I did, or a form that won’t respond to tamoxifen. That is a different set of decisions as well. A woman who dislikes the size, shape or other aspects of her healthy breast may also make a different set of choices and be less concerned with sensation.
There were benefits to waiting to do a mastectomy (though I didn’t do mine by choice). As an older woman (and after having a baby) I have enough belly fat to use for reconstruction. I was too thin to do that in my 30s (sigh) and, anyway, it was less commonly done. That means my new breast is not an implant. It was made from my own flesh. It won’t degrade. It matches my healthy breast and will (for better or worse) be similarly affected by gravity. So no replacement down the line, no nip and tuck. I am done with surgery. And I am not, nor will I be, “lopsided” as a result of keeping my healthy breast. (I probably would have had an implant if I could have–the initial surgery is WAY easier, but I’m glad it ended up this way).
I also benefited because nipple-sparing mastectomy was not then available. Now it is. Again, still no sensation, but it looks better. For those considering prophylactic mastectomy who can possibly delay, know that there are new techniques in the offing that may be less invasive and create a better result. Maybe, some day, they will even spare the nerves. That’s another reason to take into account how your risk changes over time.
Becca, being diagnosed with cancer young is horrifying and scary and I’m sorry it happened to you, too. Often it means the cancer you have is more aggressive. This was not the case for me (I have “little old lady” cancer) and I hope it’s not for you. It may interest you to know what has happened to the women in my initial support group of women under 40 with breast cancer.
Sadly, two have died. They had aggressive disease from early on and mastectomy would have made no difference to them.
Those of us who are still here are now in our fifties with full, busy lives. Most of us are faring well. Two have metastatic disease; one has been living with mets for 15 years. A mastectomy would not have made a difference to either of them. Three have had chest wall recurrences, one despite mastectomy. I am the only one who has had a local recurrence.
Removing my healthy breast would not have changed that. Admittedly, a mastectomy would have. Still, the chances that this would have happened were very small–maybe 6% at most. There have been advantages to delaying mastectomy 15 years. And while a local recurrence does raise my risk of metastatic disease, it is not by much. So for me, living with that small risk of recurrence was worth it, even though things have not fully gone my way.
Everyone else, as far as I know, has remained healthy and I hope always will. Three of us who had not yet had children have gone on to become mothers, which has been a great gift.
In every case except perhaps mine, our status has played out as the original biology of our tumors would predict.
No one has been diagnosed with a new cancer in her other breast.
I hope for and work towards better options so that none of our friends, sisters, mothers, aunts, daughters, neighbors etc will have to face the choices we did.
So, still on Angelina here. And why, aside from her marriage to Brad Pitt and her right leg having its own Twitter account, you and I are not like her. This clip from CNN is the best and most responsible summations I’ve seen over the last week.
I love it because Dr. Monica Morrow from Memorial Sloan-Kettering is smart, calm and clear. She explains not only what you need to know but what you should ask your own doctor if 1) you’re concerned about a genetic mutation or 2) you are a woman of seemingly average risk diagnosed with breast cancer in one breast and think you should respond by having a double mastectomy “just in case.”
The other reason this clip is great is because of the intelligence and sensitivity of the interviewer, Zoraida Sambolin, who is herself dealing with a breast cancer diagnosis (though she doesn’t reveal the nature of her cancer). When she starts talking about her decision-making process her voice shakes. I can see how hard this is for her to talk about on camera. But she sees it through in a way that is real, beautiful and, yes, brave.
Some key statements Dr. Morrow made that bear repeating:
Most women, even those with a mother or sister with breast cancer, don’t have a BRCA mutation.
In the U.S. we’re seeing an incredible increase in double mastectomy in women [diagnosed with cancer in one breast] paradoxically at the same time that the risk of cancer in the other breast has gone steadily down because the medicine we use to treat the cancer you already have reduces that risk.
I am, you may recall, one of the beneficiaries of that risk reduction. I take a drug every day called tamoxifen, which I’ll be on for a total of five years. It is not perfect–its side effects range from annoying night sweats to a small increase in your chance of uterine cancer–so you wouldn’t want to take it without real cause. But you also wouldn’t want to do chemo without cause. You take a drug because you need it. And I need it. Tamoxifen reduces my risk of cancer in my healthy breast to that of an average woman. As I wrote in the New York Times Magazine:
Average risk, after all, is not zero. Could I live with that? …What did doing “everything” mean, anyway? There are days when I skip sunscreen. I don’t exercise as much as I should. I haven’t given up aged Gouda despite my latest cholesterol count; I don’t get enough calcium. And, oh, yeah, my house is six blocks from a fault line. Is living with a certain amount of breast-cancer risk really so different? I decided to take my doctor’s advice, to do only what had to be done.
Back to the CNN piece. Another crucial statement by Dr. Morrow:
It’s important for women to understand that having your other breast removed does not prolong your life. Many women believe that’s true. Unfortunately, it’s not. Breast cancer doesn’t spread from breast to breast so removing one breast doesn’t reduce your risk of the cancer spreading.
When you are diagnosed with breast cancer I know, believe me I know, you want it out yesterday. But in most cases there’s really no rush. Take a few weeks: gather information, ask questions, find the right doctor. You will live with these decisions for the rest of your life which will hopefully be long and fruitful. Make them from a place of knowledge, not emotion. Find out what your true risk is not only of breast cancer but of metastatic disease (which is the kind that kills you) and how removing your breast or breasts will affect that. Recognize that in many cases lumpectomy and radiation are as good and possibly better than mastectomy in terms of survival. Remember that what you do to your breast will not affect your survival as much as what you do systemically. To any physicians reading this: I know that today’s sensitive docs are taught to “listen” to their patients. But you are still responsible for educating them completely and fully. You can correct misinformation; you can give your opinion and argue for it.
Remember: Primum Non Nocere.
Finally, my favorite thing Dr. Morrow said, something I may have tattooed right across my fake breast (since it’s numb, I wouldn’t feel the needles—bonus!) :
SURGERY IS A BAD WAY TO TREAT FEAR.
I respect Angelina Jolie’s decision, but the take-away ought to be that it was a lousy choice to have to make. I’m not so sure having surgery makes her “brave,” but what she does next might: like whether she becomes a voice against gene patenting, something you can find out more about from in this video from the ACLU or from groups like Breast Cancer Action or Breast Cancer Consortium (you will see nothing about gene patenting on Komen‘s site, by the way, perhaps because Myriad Genetics, which owns YOUR genes, is a donor!).
Anyone can have body parts cut off; courage comes from asking why the choices are so grim; bravery from becoming an agent of change. So far, the only beneficiary of Jolie’s revelation had been Myriad, whose stock rose in the wake of her announcement. I can’t believe that was her intent.
Angelina, don’t you want better choices for your children?
Shiloh Jolie-Pitt, Angelina and Brad’s 6-year-old daughter, February 2013
Largely because of the cover story I wrote on breast cancer a few weeks back in the New York Times Magazine, I spent yesterday being asked my reaction to Angeline Jolie’s announcement of her preventative double mastectomy. I talked to newspaper reporters, was on TV, on the radio. I wrote a post for the New York Times Magazine blog. But sometimes in this new media era of quick turn-around, we’re compelled to react so fast we don’t have much of a chance to actually think. And twenty-four measly hours later, as the dust has settled a bit, these are the issues I believe are stake:
The advisability of removing your breasts and ovaries when you have a rare genetic mutation such as Jolie’s (the BRCA1 mutation affect .6% of the general population; about 1% of Ashkenazi Jews; about 5-10% of women diagnosed with breast cancer). Hers was a totally understandable and medically warranted choice. It’s worth noting, however, that research on those families is primarily based on those that have been devastated by cancer. It may turn out over time that if families with less incidence are included, the risk of death is lower than previously believed. Still, it’s a viable choice. And a lousy one to have to make. Which brings me to:
The expense of the test-$3,000–and crummy options for women with a positive result. Myriad Genetics owns the patent on the BRCA genes. That’s right: Owns. Genes. As Karuna Jaggar, exectutive director of Breast Cancer Action writes on the organization’s blog that means it controls all research, testing (including its costs), diagnostics and development of treatments related to the BRCA genes. Elsewhere she writes:
This monopoly prevents anyone else from so much as examining the genes, and creates barriers to scientific research and medical care relating to breast and ovarian cancer, including:
• High testing costs.
• No second opinions.
• Undermining research.
• Blocking the development and availability of alternative tests.
• Lack of data sharing and analysis.
• Limited information for underserved populations.
Breast Cancer Action, along with researchers, genetic counselors and cancer patients joined a lawsuit to overturn Myriad Genetics’ patent (and by extension any company’s patent on our genes). The case was heard last month by the U.S. Supreme Court; a ruling is expected this summer.
Facing the decisions high risk women confront is excruciating. Perhaps by pushing beyond the personal story and into the larger questions we can make things a little better for the next generation. You might be wondering where Komen stands in all of this. They are silent. Perhaps because Myriad Genetics is one of their donors.
Another issue is the way we talk about breast cancer. Breast cancer is not one disease; it is a family of diseases that range from the virulent to the relatively benign. So it is not, by a long shot, an automatic death sentence and we need to recognize that so we can respond reasonably and appropriately–tumor biology matters. As patients, our situations are not all the same; they run a huge gamut that requires a range of decision-making.
Meanwhile, Pink ribbon culture, as I wrote in the piece, has stoked our (understandable) fears of breast cancer creating, if unintentionally, an exaggerated perception of risk among the average woman. That’s affecting our health choices and, ironically, deflecting attention from those who truly need it–those with metastatic disease.
I reported in my piece that there has been a steep rise in the percentage of women choosing to have both breasts removed after a low-grade cancer diagnosis in one breast. That will not keep the disease from spreading elsewhere in your body (which, again, is what is lethal, not cancer in your breast) . The hope is to prevent a new cancer on the other side. One would assume that women making such a radical decision would be provided with the most accurate information and deepest understanding of personal risk. Yet, researchers have found that such women vastly over-estimated their risk of a new cancer, believing it to be be 30 percent over 10 years when it was really 5 percent. Meanwhile, for those of us whose cancer allows it, treatments like Tamoxifen and aromatase inhibitors both reduce the chances that our existing disease will spread and reduce our risk in the other breast.
Ultimately our fear of breast cancer–or the manipulation of those fears– can distract us from what actually needs to be done to reduce the incidence of this potentially deadly disease and lower risk for everyone. It distracts us from demanding research into prevention; the mechanisms by which cancer spreads; less toxic, more effective treatments; the impact of social social inequity.
Barbara Brenner, a breast cancer activist who died last week, used to say we can’t shop our way out of the breast cancer epidemic. Sadly, we can’t amputate our way out of it either.
So many people have sent me links to Jamie Moore’s work. Moore is a photographer and mom to a 5-year-old girl, Emma. In response to the cultural omnivorousness of Disney Princess, she she began to think about:
…all the REAL women for my daughter to know about and look up too, REAL women who without ever meeting Emma have changed her life for the better. My daughter wasn’t born into royalty, but she was born into a country where she can now vote, become a doctor, a pilot, an astronaut, or even President if she wants and that’s what REALLY matters. I wanted her to know the value of these amazing women who had gone against everything so she can now have everything.
Gosh, that is so beautifully written, isn’t it? Anyway, she and Emma chose five of those women for Emma to dress up as to honor for her fifth birthday.
…but there are thousands of unbelievable women (and girls) who have beat the odds and fought (and still fight) for their equal rights all over the world……..so let’s set aside the Barbie Dolls and the Disney Princesses for just a moment, and let’s show our girls the REAL women they can be.
You have got to see the results. GOT TO. This is exactly what I mean when I talk about “fighting fun with fun.” Everyone has their own limits, tolerance, acceptance for the Disney Princesses and all that comes after, but wherever you stand on that spectrum, it’s important to give your daughter a broader view (no intended, sort of) of what it means to be a girl and a woman. So thank you SO MUCH for giving me something beautiful I can share with my daughter, Ms. Moore and Emma.
I hope you don’t mind if I reprint one of your photos here….And could you please, please keep going with this project? We need it!
I often wonder if the general reader knows about fact-checkers. A fact-checker at a magazine verifies every single fact that a writer includes in an article. Every. Single. One. So, say, when I turned in my recent article, “Our Feel-Good War On Breast Cancer” to The New York Times Magazine I had to provide an annotated copy of the piece along with acceptable documentation for everything I had written. In this case, that included multiple articles from peer reviewed publications such as The New England Journal of Medicine, The Journal of Clinical Oncology and the British Medical Journal, statistics from National Cancer Institute and its SEER database, things like that. Statistics quoted in other articles are unacceptable—even other fact-checked publications. If I see an interesting statistic in Time or on Reuters I have to track down the original source or it’s a no-go. Nor could I use a stat from a breast cancer advocacy group without tracing it to its source. I also had to supply the emails and phone numbers of every person I interviewed so they could be contacted to verify what they said to me.
As you can imagine, this is a laborious, grueling process. Some facts that would have made it into a blog post or a less stringent magazine did not stand up to the test of the Times. I lost some battles I felt I should have won. I got frustrated and snippy. But in the end, I know that what I wrote has integrity. It’s solid. It’s accurate. And I’m grateful for that. I’m not saying the New York Times Magazine (or the paper itself) never makes errors–it does, sometimes bigtime. But there is accountability. To my mind, that’s why journalism—real journalism—continues to be an important public service. Fact-checked media can still sometimes be wrong, misled, deceived. But it is accountable.
So when someone named Tara Meltzer called me “irresponsible” in The Huffington Post I took the slur seriously. And when she–and by extension HuffPo–makes statements with no attribution, research or fact-checking I have to respond: it is not only a matter of my reputation, but of public health. If Meltzer had attacked me on a personal blog, I’d let it go—that’s her dinner party. But this is HuffPo, a publication that itself has pretentions towards mainstream respectability and accountability. They can’t have that and be indifferent accuracy. So, here we go.
Meltzer starts her column out, after expressing her personal anger towards me, by saying:
A mammogram isn’t something you stare into space twirling your hair thinking about twice. If you don’t have a family history, get a baseline at 35 and annually once you hit 40. If you do have a family history, you probably have to start earlier.
Ms. Meltzer, what is the source for that medical advice? According to my reporting, the recommendations for a baseline screening under forty for women of average risk were dropped by the early 1990s. The National Cancer Institute, for instance, currently says:
studies to date have not shown a benefit from regular screening mammography in women under age 40 or from baseline screening mammograms (mammograms used for comparison) taken before age 40.
I discuss the potential benefits versus the harms of screening in your forties in my piece, so I won’t reiterate that here. But it might be useful to look at what Dr. Susan Love wrote back in 2009, in (waddaya know!) The Huffington Post about why in this country we still screen women annually in that demographic when so many other countries do not (I am quoting Love because she is a recognized expert in the field):
…in January, 1997, there was a large consensus conference sponsored by the National Cancer Institute to discuss this issue. Independent experts representing researchers, clinicians, statisticians, epidemiologists, and consumers testified and 12 independent experts reviewed the data. Their conclusion was ‘…that the data currently available do not warrant a universal recommendation for mammography for all women in their forties.’ They recommended that women decide with their doctors on the best approach to take.
You would have thought that this reasoned approach would settle the issue but immediately a storm of acrimonious protest broke out as well documented by Virginia Ernster in the American Journal of Public Health. Within days of the conference and heavy lobbying by various special interest groups, the Senate voted 98 to 0 to endorse a nonbinding resolution that the presidentially appointed National Cancer Advisory Board recommend mammography screening for women under 50. By March a press conference was held to announce the NCAB’s recommendation that the NCI advises women age 40-49 to have screening mammograms. So, the current recommendations, far from being scientifically based, were based on lobbying by interested parties seeking to support a public view which exceeded the science. [emphasis mine)
You (or Ms. Meltzer) can also take a look at one of Tara-Parker Pope’s excellent columns on mammography. Or read this Times op-ed by Dr. Love. I also just received copies of two books that look fascinating: The Big Squeeze and The Breast Cancer Wars. If you’re really digging in, I’d suggest Pink Ribbon Blues; Pink Ribbons, Inc; and Unnatural History: Breast Cancer and American Society.
Okay, back to Ms. Meltzer’s complaints:
What bothers me the most about Orenstein’s article is that most people aren’t privileged enough to live in NYC and have access to the best care and the most progressive thinking. If you live outside NYC, Los Angeles or any other cosmopolitan area, chances are strong a woman won’t be encouraged to get a mammogram until her 50th birthday
First of all, I don’t live in New York City. I live in the Bay Area, which is indeed a bastion of progressive thinking. And while progressive thinking is in no way limited to major metropolitan areas, it is true that those of us who live in big cities often have better access to care.
But I wouldn’t define “progressive thinking” as Meltzer does. In fact, given the most current research, it would not involve a blanket recommendation of screening mammograms beginning at 40. Quite the opposite. Nor would doctors who know their stuff base advice on personal anecdote. A good physician will take your health into account, your history into account, your age into account and look at the research. He or she will thoroughly explain the risks and benefits of mammography and may well tell you that screening every other year in your 50s and 60s will not increase your chances of dying of breast cancer (for reasons you can read about in my story), but will reduce your chances of over-diagnosis and harm from mammography.
Among the folks I quoted whom Ms. Meltzer apparently felt were non-progressive and unenlightened were Barry Kramer of the National Cancer Institute; Laura Esserman, director of the Carol Franc Buck Breast Care Center at the University of California, San Francisco; Susan Love, president of the Dr. Susan Love Research Foundation and author of the magnificent Dr. Susan Love’s Breast Book; Steven Woloshin and Gilbert Welch, colleagues and professors of medicine at the Dartmouth Institute for Health Policy and Clinical Practice. I also cited a survey on screening conducted by the Cochrane Collaboration involving 600,000 women around the world. Meanwhile, I have received positive feedback about the article from, among others, Otis Brawley, of the American Cancer Society (which I criticized in the article, so I’m particularly impressed that he was so open-minded); Susan Desmond-Hellman, the chancellor of UCSF (and an oncologist herself); V. Craig Jordan the “father of Tamoxifen” and Harvey Mamon, Clinical Director of the Department of Radiology at Brigham Young Women’s Hospital/Dana Farber Cancer Institute .
As far as I can see, Ms. Meltzer herself, a TV producer, consulted no authority but her own as a patient.
That’s where things get tricky. Ms. Meltzer writes:
Under those guidelines [i.e., mammograms every other year between 50 and 74 as recommended by the federal independent task force], I wouldn’t have made it to that first appointment. I guess Ms. Orenstein would say I might of, and I should have, taken a gamble. After all, I had the good kind of cancer: Stage 1 DCIS (Ductal Carcinoma In Situ); or in layman’s terms, the one that grows slowly.
I am very, very sorry Ms. Meltzer has had to go through any form of cancer diagnosis and treatment. I know, in the deepest possible way, what it means to have the rug of your life pulled out from under you. You never trust the ground you’re standing on again. Having had invasive breast cancer and then a recurrence I respect the fear women have of the disease. Whenever I develop a lingering cough out of nowhere I am afraid. Whenever I get a back-ache that doesn’t go away I am afraid. Because of my diagnoses my daughter and my mother are now considered high-risk (I have no sisters). Because of my extreme youth the first time around, my nieces, cousins and aunt are also on alert. So, a breast cancer diagnosis affects not only a woman herself, but generations of female relatives as well as all those (male and female) who love her.
That said, Ms. Meltzer does not seem to understand that there are many different kinds of breast cancer. Not only, as I explained in my piece, are there at least four kinds of invasive cancer, but there is an important distinction between various forms of DCIS, for which she was treated, and invasive disease. Ms. Meltzer writes that she was diagnosed with:
…the good kind of cancer: Stage 1 DCIS (Ductal Carcinoma In Situ); or in layman’s terms, the one that grows slowly.
Those are only “laymen’s terms” if you don’t think laymen deserve accurate information. By definition DCIS is Stage 0 cancer, not Stage 1. In order for cancer to be “stage 1” it has to be capable of invading other tissue. DCIS is not and in many, possibly most, cases never will be. DCIS is a condition–really a pre-cancer–in which abnormal cells are found in the lining of the milk-producing ducts. In my piece I wrote:
Before universal screening, D.C.I.S. was rare. Now D.C.I.S. and the less common lobular carcinoma in situ account for about a quarter of new breast-cancer cases — some 60,000 a year. In situ cancers are more prevalent among women in their 40s. By 2020, according to the National Institutes of Health’s estimate, more than one million American women will be living with a D.C.I.S. diagnosis.
D.C.I.S. survivors are celebrated at pink-ribbon events as triumphs of early detection: theirs was an easily treatable disease with a nearly 100 percent 10-year survival rate. The thing is, in most cases (estimates vary widely between 50 and 80 percent) D.C.I.S. will stay right where it is — “in situ” means “in place.” Unless it develops into invasive cancer, D.C.I.S. lacks the capacity to spread beyond the breast, so it will not become lethal. Autopsies have shown that as many as 14 percent of women who died of something other than breast cancer unknowingly had D.C.I.S.
There is as yet no sure way to tell which D.C.I.S. will turn into invasive cancer, so every instance is treated as if it is potentially life-threatening. That needs to change, according to Laura Esserman, director of the Carol Franc Buck Breast Care Center at the University of California, San Francisco. Esserman is campaigning to rename D.C.I.S. by removing its big “C” in an attempt to put it in perspective and tamp down women’s fear. “D.C.I.S. is not cancer,” she explained. “It’s a risk factor. For many D.C.I.S. lesions, there is only a 5 percent chance of invasive cancer developing over 10 years. That’s like the average risk of a 62-year-old. We don’t do heart surgery when someone comes in with high cholesterol. What are we doing to these people?” In Britain, where women are screened every three years beginning at 50, the government recently decided to revise its brochure on mammography to include a more thorough discussion of overdiagnosis, something it previously dispatched with in one sentence. That may or may not change anyone’s mind about screening, but at least there is a fuller explanation of the trade-offs.
In this country, the huge jump in D.C.I.S. diagnoses potentially transforms some 50,000 healthy people a year into “cancer survivors ” and contributes to the larger sense that breast cancer is “everywhere,” happening to “everyone.” That, in turn, stokes women’s anxiety about their personal vulnerability, increasing demand for screening — which, inevitably, results in even more diagnoses of D.C.I.S. Meanwhile, D.C.I.S. patients themselves are subject to the pain, mutilation, side effects and psychological trauma of anyone with cancer and may never think of themselves as fully healthy again.
I can’t say whether Ms. Meltzer’s DCIS would ever have become invasive cancer. Neither can she. Neither can the current state of research. I also can’t say (nor can medical science) whether her disease, had it turned to invasive cancer, would have been aggressive or not, treatable or not, life-threatening or not. What I can tell you, based on data, is this: if screening worked as it should, for every case of DCIS or early stage cancer it detected there ought to be one less case of late stage disease. But that hasn’t happened. Since screening was introduced, there has been no change in the incidence of women presenting with metastatic cancer (the kind that kills you) and little decrease in the incidence of those presenting with late stage disease. Which is how we know there is a vast amount of overdiagnosis and overtreatment going on as a result of screening.
That ambiguity, rather than my article, is what ought to make Ms. Meltzer angry. Instead of her relief at the apparent triumph of early detection–something that may or may not have made a difference for her–why not focus energy, effort and funds in part towards understanding DCIS better, towards figuring out who really needs treatment and who does not? I’m with Dr. Esserman on this one. I hope some day my daughter can look back at what is now done to DCIS patients the way I look back at the Halsted mastectomy–as something excessive and barbaric. And the reason it changed was that women’s health advocates and cancer patients demanded it.
Dr. Esserman and I were featured on KQED-radio after my piece came out, by the way. We talk extensively about DCIS, so if you’re interested take a listen here.
Ms. Meltzer accuses me of a kind of rebellious “nose-thumbing” at pink ribbon culture (Nancy Brinker also called my critique a “distraction” rather than engaging with it and considering how her organization could do better–very disappointing). I think I’m pretty clear in the piece about my concerns which are hardly immature. Among them: distorted information to women and girls that results in exaggeration of perceived risk and potentially poor health care decisions; corporate partnerships that create conflict of interests (or their appearance); deceptive statistics on the value of mammography; a limited percentage of funds dedicated to research (in Komen’s case, I report it was 16% of what they took in during 2011); marginalization of those with metastatic disease–the ones who will actually die of cancer. Beyond that, I report on which research is currently underfunded and needs our attention.
But I can’t reiterate in a blog post what took me months to write.
I do want to express support for Ms. Meltzer around mastectomy and reconstruction, which she implies she went through. It’s not uncommon for a DCIS patient to end up with mastectomy, because the condition can be scattered throughout the breast. Reconstruction, as she says, is not the same as “a boob job.” It may look like a breast (or not, depending on the skill of your surgeon) but it has no sensation. Think of it as having a ball of socks appended to your chest. And again, since we can’t distinguish between threatening and benign DCIS, that means at least some women are going through that surgery that don’t medically need it. And again, that is another reason we need to put our effort towards making change.
I also understand Ms. Meltzer’s concerns about her fertility. Chemo and Tamoxifen can both compromise fertility. That’s a special concern for the minority of us who are diagnosed young. In part because of that (and in part because the research was not yet clear on its benefit to premenopausal women) I opted against Tamoxifen in 1997. Although I subsequently had a local recurrence, I don’t regret that decision. It made sense at the time—the chances this would happen were very small and the impact of the recurrence on my long-term prognosis (that is, my chances of dying) is slight. Having a mastectomy at 51 has been a lot less traumatic for me than it would have been at 35. Most importantly, retaining my fertility allowed me to conceive my daughter. At this point, I’m totally cool with my Tamoxifen-induced menopause. In fact, I’m relieved to be done with the whole peri thing.
Finally, Meltzer reduces my 6500 word piece to “irresponsibility” about mammograms and being “mad” at Komen. At first that made me angry. Then I realized something important: Tara Meltzer reminds me of my younger self, the woman I was at the time of my first, terrifying breast cancer diagnosis. Like her, I was angry back in 1997 lashing out in print when, just weeks after I started treatment, I saw the research suggesting women of average risk didn’t need to begin screening until 50 (important note: we are talking about screening mammograms not diagnostic mammograms which are done when a woman or her doctor find a lump. Also, if you find a lump in your breast get to a doctor right now!!!). I opened my current piece by writing:
I used to believe that a mammogram saved my life. I even wrote that in the pages of this magazine. It was 1996, and I had just turned 35 when my doctor sent me for an initial screening — a relatively common practice at the time — that would serve as a base line when I began annual mammograms at 40. I had no family history of breast cancer, no particular risk factors for the disease
So when the radiologist found an odd, bicycle-spoke-like pattern on the film — not even a lump — and sent me for a biopsy, I wasn’t worried. After all, who got breast cancer at 35?
It turns out I did. Recalling the fear, confusion, anger and grief of that time is still painful. My only solace was that the system worked precisely as it should: the mammogram caught my tumor early, and I was treated with a lumpectomy and six weeks of radiation; I was going to survive.
By coincidence, just a week after my diagnosis, a panel convened by the National Institutes of Health made headlines when it declined to recommend universal screening for women in their 40s; evidence simply didn’t show it significantly decreased breast-cancer deaths in that age group. What’s more, because of their denser breast tissue, younger women were subject to disproportionate false positives — leading to unnecessary biopsies and worry — as well as false negatives, in which cancer was missed entirely.
Those conclusions hit me like a sucker punch. “I am the person whose life is officially not worth saving,” I wrote angrily. When the American Cancer Society as well as the newer Susan G. Komen foundation rejected the panel’s findings, saying mammography was still the best tool to decrease breast-cancer mortality, friends across the country called to congratulate me as if I’d scored a personal victory. I considered myself a loud-and-proud example of the benefits of early detection.
Sixteen years later, my thinking has changed. As study after study revealed the limits of screening — and the dangers of overtreatment — a thought niggled at my consciousness. How much had my mammogram really mattered? Would the outcome have been the same had I bumped into the cancer on my own years later? It’s hard to argue with a good result. After all, I am alive and grateful to be here. But I’ve watched friends whose breast cancers were detected “early” die anyway. I’ve sweated out what blessedly turned out to be false alarms with many others.
Recently, a survey of three decades of screening published in November in The New England Journal of Medicine found that mammography’s impact is decidedly mixed: it does reduce, by a small percentage, the number of women who are told they have late-stage cancer, but it is far more likely to result in overdiagnosis and unnecessary treatment, including surgery, weeks of radiation and potentially toxic drugs. And yet, mammography remains an unquestioned pillar of the pink-ribbon awareness movement. Just about everywhere I go — the supermarket, the dry cleaner, the gym, the gas pump, the movie theater, the airport, the florist, the bank, the mall — I see posters proclaiming that “early detection is the best protection” and “mammograms save lives.” But how many lives, exactly, are being “saved,” under what circumstances and at what cost? Raising the public profile of breast cancer, a disease once spoken of only in whispers, was at one time critically important, as was emphasizing the benefits of screening. But there are unintended consequences to ever-greater “awareness” — and they, too, affect women’s health.
(Another note: fact-checkers can be infuriating sticklers. You may notice that in this post I have said I was diagnosed in 1997. That’s true. But I had that first mammogram in mid-December 1996. So we had a big fight over which date was correct and they over-ruled me and said since I’m talking about the mammogram it needs to be 1996. Confusing, I know.)
I wrote that first piece out of fear and shock over my cancer diagnosis rather than striving for a true understanding of research, nuance, and public health. Parts of that piece are solid–especially my description of what it feels like to be a young woman diagnosed with a potentially lethal disease. I’m less happy with other aspects. I hope, over time, that Ms. Meltzer will realize she was wrong as well and that she will put her efforts—her time, her talent, her money—towards doing the work that really needs to be done.
As for HuffPo: I don’t really get it. When I write an editorial for a newspaper–the LA Times, the New York Times, USA Today–there is at least some editorial process in place to make sure that what I write as “fact” is indeed “fact.” They may have different standards for proof, but proof is required. As a credible news outlet it seems you should do the same. You publish Susan Love and Fran Visco. Why this?
Finally: while I’m writing such a long post, I’d like to apologize to all of you who have written to me about this piece. I’ve been deluged with email and simply been unable to keep up. Some day I hope to write back, but if I don’t, it’s not out of lack of appreciation.
(The Cancer Song by Larry Brewer)
In an earlier post, I wrote about Rose Kushner, wondering why her name and voice had been sidelined in the story of breast cancer activism. If anyone could be considered the heir to Kushner (insomuch as I understand her story), it is my friend and inspiration Barbara Brenner. Barbara put up her final “Healthy Barbs” blog post earlier this week. I will miss her fierceness, passion and uncompromising intelligence.
I got to know Barbara as the head of Breast Cancer Action; back then, as I recall, the organization’s motto was, “The Bad Girls of Breast Cancer.” I liked that.
It often took me years of conversations to catch up with Barbara’s thinking. She was the one who first talked to me about the over-promise of mammography. She also talked about the lack of centralized data on cancer patients and cancer research. That just sounded wonky to me, ut now I finally get how critical that work is.
Barbara may be best known for coining the term “pinkwashing” (again, years before anyone really “got it.”). Pinkwashing is when companies claim to care about women and breast cancer by sporting the pink ribbon while at the same time producing products linked to the disease or other threats to public health. There are legions of examples. In my recent Times article I wrote:
Having football teams don rose-colored cleats, for instance, can counteract bad press over how the N.F.L. handles accusations against players of rape or domestic violence. Chevron’s donations to California Komen affiliates may help deflect what Cal OSHA called its “willful violations” of safety that led to a huge refinery fire last year in a Bay Area neighborhood.
Barbara was first diagnosed with breast cancer in 1993 at age 41; about three years later, she had a local recurrence. Then, after fifteen years of breast cancer activism, she contracted another disease–ALS. Often (and incorrectly as she would tell you) called “Lou Gherig’s Disease,” ALS is a fatal degenerative neuromuscular illness. Barbara wrote a post about this outstanding PSA, put together by supporters of football player Steve Gleason to raise needed awareness, and how it differed from the typical pink-ribbon feel-goodism:
Discussing the two illnesses on her blog, “Healthy Barbs,” Barbara wrote:
The issues are both different and remarkably similar.
How I think about this illness and how I react are influenced by my years as a breast cancer activist. How people deal with me now makes me think about how people deal with others who are ill. The purpose of this blog, Healthy Barbs, is to encourage people to learn to think in new ways about illness and health and to prompt them to be critical of the mainstream coverage of health issues.
It’s not meant to be comfortable. It’s meant to make people THINK!
That is Barbara: it’s not about making nice. It’s about understanding, thinking, getting stuff DONE.
The last communication I had from Barbara was on May 7 in the comments to my previous post about Nancy Brinker’s 64% pay raise. Barbara wrote: “Actually, Brinker is still the CEO. She will have that title untl Komen hires her replacement. Who in their right mind would take that job if Brinker is still involved? Got me.”
On May 8, just one day later according to her Caring Bridge site, Barbara decided to stop taking nourishment. She continues to take liquids.
I hope she won’t mind that I’m copying part of her final post here:
I have been blessed to lead a rich life, full of love and culture and travel and work that had meaning for me. I have no regrets except that I got ALS in the first place.
I have met amazing people both in person and on-line. Everyone I have come in contact with has had something unique to offer the world. The world is a better place because these people are or were in it. Some of these people I have mentored (and you know who you are), others have taught me. What I know about all of these people is that I have been blessed to know them, and that they will succeed at what they set their hearts and minds to do.
In the Jewish tradition there is a Priestly Blessing. I copy below it because it is what I wish for all readers of these words:
May the Lord bless you
and keep you;
May the Lord make his face shine on you
and be gracious to you;
May the Lord turn his face toward you
and give you peace.
Barbara, you have made a difference in my life–and in that of so many others–as well as in my work. Your voice and spirit will always be in my heart. I love you. I will miss you.
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
You can change this.
Nancy Brinker from the Dallas News: Talking pink, earning green.
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.”
To: “Thomas Paolella” <TPaolella@meridianhealth.com>
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 www.PainttheTownPink.com. 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.
Public Relations Manager
Riverview Medical Center
Bayshore Community Hospital
Office: (732) 530-2282 I Cell: (848) 203-7596
So, I was about to commend Disney for doing something right. Yes, I was. The front page story in today’s New York Times reported that the company stopped production of branded merchandise in Bangladesh in March, after the last disaster there: a fire that killed 112 people. To wit:
A Disney official told The New York Times on Wednesday that the company had sent a letter to thousands of licensees and vendors on March 4 setting out new rules for overseas production.
Less than 1 percent of the factories used by Disney’s contractors are in Bangladesh, according to the official, who spoke on the condition of anonymity. The company’s efforts had accelerated because of the November fire at a factory that labor advocates asserted had made Disney apparel. The Disney ban also extends to other countries, including Pakistan, where a fire last September killed 262 garment workers.
So good for them. Good for Disney for trying to show some leadership and ethics regarding how its products are made. I respect that.
Now back to discussing the depressing results.
Rebecca Pahle over at The Mary Sue alerted me to the news that on May 11 Merida from Brave will to be crowned the 11th Disney princess. You remember Merida, right? The one with the bow and arrow? The one who looked like this?
Well, not any more. As with the other Princesses, she has gotten a redesign, a pretty-sexy-skinny makeover to boost revenues. Voila, the new Merida:
There’s the hot hair, the coy expression. Also the obligatory exposed shoulders (moms tell me all the time that their preschool daughters are pitching fits and destroying their t-shirts because “princesses don’t cover their shoulders), slimmer waist, and the bow and arrow replaced by…what is that, a low-slung belt? And she has what appear to be high-heeled shoes. Or at least slimmer, pointier feet.
Inside the Magic, a blog promoting Disney and theme park events, says that Merida’s official royal ceremony will be well attended:
She will be joining existing Disney Princesses Snow White, Mulan, Aurora, Belle, Tiana, Ariel, Cinderella, Jasmine, Pocahontas, and Rapunzel in the line, all of whom are likely to make an appearance at the coronation. New hairstyles, makeup, and dresses were recently given to the princesses in a modern update to their looks, which are also now reflected at Disney’s theme parks .
Because, in the end, it wasn’t about being brave after all. It was about being pretty.
In case you’ve missed it, by the way, here’s the updated look of the other ten princesses:
I’m especially creeped out by Belle who appears to have had major surgery. Compare this new chickabiddy to the actual movie:
Or, wait, maybe I’m more creeped out by the way they’ve changed Aurora (who used to be called Briar Rose).
Or, wait, what about what about the apparent lobotomy that Rapunzel has had? OrAnd Cinderella looking like Taylor Swift? And Pocahontas? Tiana looks like she’s not getting enough to eat at that restaurant of hers. And Mulan, poor, poor Mulan. And here’s what Jasmine used to look like:
Snow White and Ariel were always especially vapid so I don’t have much to say there.
I hate to be in the position of defending the “old days” when the princesses looked “normal” (because, really, it’s all relative and it’s not like I was happy with them before this). Still, check out this pic, also from Inside the Magic, of the latest princess lineup including the new Merida:
Look at that head position on poor, exposed-shouldered Merida! In addition to everything else, they’re pushing the brown girls slowly but surely to the edges. Tiana is thinking, “Wait, I only got one year up front? One lousy year to make up for nearly a century of racism (though to be fair, the ugliness extended well beyond Disney’s depiction of African Americans)? Meanwhile, Mulan looks WEIRDER THAN EVER. She doesn’t even look human she’s been so Orientalized and botoxed.
This is what she used to look like:
I’ve always said that it’s not about the movies. It’s about the bait-and-switch that happens in the merchandise, and the way the characters have evolved and proliferated off-screen. Maybe the problem is partly that these characters are designed in Hollywood, where real women are altering their appearance so regularly that animators, and certainly studio execs, think it’s normal.
Ok, you know what? I’m so tired. Someone else take over here and make some pithy, salient points about the impact on girls of being bombarded with skinny, pretty, sexy messages and endless consumer products that tell them from the earliest ages that how they look is who they are, ok?
I’ll just leave you with that moment of promise, the trailer from Brave when we thought maybe Disney was showing some leadership and ethics not only in how they made their products, but the actual products they made.