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):

…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)