Our Feel-Good War on Breast Cancer: Who Will Listen?

Patrick Hamilton/Newspix/Getty Images; Matt Born/The Star-News, via Associated Press; Gabrielle Plucknette/The New York Times; Sharpie, via Associated Press; U.S. Postal Service, via Associated Press.

Peggy Orenstein’s NYT Magazine article,  “Our Feel-Good War on Breast Cancer,”  is generating a lot of commentary on Twitter and various message boards.I summarized the article and offered some commentary on the MBCN blog. But I still have a few more things to say.

As Orenstein’s article demonstrates, breast cancer is complex disease. Here are some quick thoughts about breast cancer and screening:

• Many people reading this article will be looking for an excuse to perhaps ignore some symptom or avoid a doctor’s appointment. Don’t. Talk to you doctor and determine what screening is appropriate for you.
• There is a difference between a screening mammogram and diagnostic mammogram. Note that Orenstein’s article concerns screening mammograms. If you are called back for a diagnostic mammogram, by all means keep that appointment! (“Diagnostic mammography…is an important tool,” says Dr. Gilbert Welch.  “No one argues about this.”)
• Women who have recently given birth have a short-term increase in breast cancer risk that declines after about 10 years. See: http://www.cancer.gov/cancertopics/factsheet/Risk/reproductive-history
• Young people do get metastatic breast cancer.
• Inflammatory breast cancer typically presents without a lump and therefore would not be found via mammography.
• People with dense  breast tissue should know the limitations of mammography. (Cancer appears white on a mammogram–dense tissue is also white. Given the lack of contrast, cancer is difficult,  if not impossible to see.  Do you have dense breasts?)

I’m grateful the New York Times provided Orenstein with a platform to tell her story. The article’s run length is both intimidating (about 6,500 words) and frankly amazing (with today’s anemic ad revenues most journalists are routinely expected to perform the print equivalent of inscribing The Lord’s Prayer on a grain of rice).

It bothers me, however, that many of the messages in Orenstein’s aren’t new. They have  just never attained the same level of discussion. Consider Musa Mayer’s 2011 NBCC presentation “Theories of Metastasis“:

Mayer wondered why very few advocates focus on MBC. She offered the following theories:

• Avoidance: Vast majority of advocates are primary breast cancer survivors at risk of recurrence: “We are what the pink crowd wants to forget because we are the painful reminders of what can happen.”
• Expertise required: Lack of knowledge about complex MBC treatments and the different issues that women with MBC face
• Lack of data: Incidence and prevalence of MBC unknown, so basic tools for advocacy are missing
• Screening and early detection still a primary focus
• Naïvete and fatalism both play a role

Musa’s Mayers “Theories on Metastasis: Innovative
Thinking, An Advocacy Perspective” can be downloaded at http://advancedbc.org/file/Mayer_NBCC_2011_0.pdf

Dr. Gilbert Welch’s 2012 NTY Op-Ed piece, “Cancer Survivor or Victim of Over Diagnosis”  also covers much of the same ground as Orenstein’s 2013 article, and, indeed, Welch is prominently featured in Orenstein’s article.

Welch’s article ran on November 21, 2012. Did you read it? Did you share it on Facebook and Twitter? I know I didn’t. Yet when Orenstein reiterates many of Welch’s points lo these five months later, suddenly this same information is more compelling.

One of Orenstein’s central tenets is that early detection is not a breast cancer cure. That’s been said before here, here and here and I’m sure countless other places. In my own writing, I have frequently cited The National Breast Cancer Coalition’s 31 Myth and Truths.  Here is an excerpt from NBCC’s Myth #2:

…evidence shows that in the United States, it has been estimated that a woman’s cumulative risk for a false-positive result after ten mammograms is almost 50 percent; the risk of undergoing an unnecessary biopsy is almost 20 percent. In addition, women who are screened with mammography often have more aggressive and unneeded treatments. It is estimated that mammography screening has increased the number of mastectomies by 20 percent and the number of mastectomies and lumpectomies combined by 30 percent.

Women are regularly told that screening mammograms save lives. Evidence of actual mortality reduction is, in fact, conflicting and continues to be questioned by scientists, policy makers and members of the public. Since evidence does not currently significantly support, nor disprove the effectiveness of this test, receiving a screening mammogram should be a personal choice, not a medical mandate.

It’s also instructive to note what this 2009  NYT Op-Ed piece said:

Screening turns up lots of tiny abnormalities that are either not cancer or are slow-growing cancers that would never progress to the point of killing a woman and might not even become known to her…The scientific argument is that it is not worth taking such risks for the large number of women whose cancers grow too slowly to kill them. But it is difficult, in practice, to apply that kind of scientific analysis to the immediate questions confronting a woman and her doctor when a mammogram turns up an abnormality. The only real solution will come when researchers find a way to distinguish the dangerous, aggressive tumors that need to be excised from the more languorous ones that do not.

If you’ve read Orenstein’s current article, that last part will certainly sound familiar.

Orenstein’s 2013 article reminds us  that metastatic breast cancer research receives scant funding, noting that “only an estimated .5 percent of all National Cancer Institute grants since 1972 focus on metastasis.”

That point previously was made in Roni Caryn Rabin’s 2011 NYT story: “A Pink Ribbon Race Years Long”:

Since it is metastasis that ultimately kills, some advocates want more resources devoted to its study and treatment. Even though many cancer drugs are initially tested on patients with advanced disease, Danny Welch, an expert on metastasis, says only a few hundred scientists in the world are trying to understand the process. “It’s responsible for 90 percent of the morbidity and mortality, but gets less than 5 percent of the budget,” said Dr. Welch…

And Mayer, in her 2011 presentation says the same thing. She offers a pie chart from Science Daily, as well as this pull quote:

“Although there is considerable variation, the median spent on metastasis research is around 5% of total cancer research funding. Is this sufficient?” Jonathan Sleeman, Patricia S. Steeg, “Cancer metastasis as a therapeutic target,” European Journal of Cancer 46 ( 2010) 1177–1180 (free full text).

To paraphrase Yogi Berra, it’s deja vu all over again, isn’t it? Well, perhaps if we say it  loud enough and long enough people will start listening.