Amy Robach Story Spreads Heartfelt Misinformation
Plain truths about breast cancer lost in mythology and wishful thinking.
Posted December 10, 2013
On the surface, these slim details may sound like adequate and pertinent information. In reality, they say little about what Robach will face and even less about what other women might need to know about breast cancer. Instead, Robach's “I got lucky by catching it early” so “every woman should get a mammogram" message continues to spread like wildfire. Sandwiched between a personal story of "denial, panic, and bravery" and the ongoing mammogram wars, the plain truths about breast cancer—namely biology and large bodies of evidence—keep getting lost. Sadly, in their place, mythology and wishful thinking.
Myth: Breast cancer is a singular disease.
“ I had had that [mammogram] prescription for a full year and I didn’t go and, you know, cancer spreads ,” said Amy Robach ( ABC News).
The greatest myth serving the early detection belief system is that breast cancer is a single, homogeneous disease that always behaves in the same way, progressing from early to late to lethal (stage 0, 1, 2, 3, 4). From this linear perspective, catching breast cancer "early" suggests that the cancer can be nipped in the bud, stopped in its tracks, prevented from progressing to a lethal stage. A cancer stage, however, is not a point in a definite progression. Staging provides a snapshot of some of a cancer's characteristics (such as size, extent, and how much the cells differ from normal cells) at a single point in time. It is an important piece, but not the only piece, of a complicated puzzle.
The linear progression model does not take into account the complex biology of breast cancer. Researchers have identified at least ten different breast cancer types with unique characteristics, and they don't always behave the same way. Some are sensitive to hormones—estrogen, progesterone, or both; others are not. Some have types of genes that affect the cancer's growth and likelihood of spreading; others do not. Categorizing breast cancers based on their morphological and chemical as well as genetic makeup (i.e., luminal A, luminal B, HER-2 positive, basal-like, and additional subtypes ) gives doctors clues about how the particular constellation of breast cancer characteristics might respond to specific treatments. Some breast cancers are so aggressive that treatment inevitably fails. Other conditions are indolent and would not require treatment at all.
Regardless of when or how a "breast cancer" is identified, it is the inherent qualities of the cancerthat matter most with regard to a course of treatment and the probability of a successful outcome. Unfortunately, information about breast cancer biology is typically excluded from public breast cancer stories. Likewise, the Robach story casts breast cancer as a homogeneous disease while omitting an entire body of evidence showing that one-size-fits-all screening doesn't work all that well.
“ Get a mammogram. It is the difference between life and death ,” says Amy Robach ( Today).
As I wrote on Psychology Today when I first learned about Robach's televised diagnosis announcement, mammography screening is the most studied of all screening tests, and there is much we know about its benefits, risks, and limitations.
Following hundreds of thousands of women over periods of 10 to 15 years, randomized controlled trials have found that few screened women, only about 15 percent who received a breast cancer diagnosis after screening, have their lives saved. Some studies put the screening-associated reduction as low as two percent . The problem is that some breast cancers don’t show up well on mammograms, or at all; some cancers, even though they may be small, have already spread throughout the body; and some of the most aggressive types of breast cancer show up between mammograms. For every ten diagnoses, one or two of them may well be tumors that would have disappeared or regressed on their own if left alone, a startling finding.
Increased screening has led to an emphasis on early detection as the way to reduce cancer deaths, and population screenings do detect many more cases of early breast cancer (one in five cases are staged at zero). But this dramatic increase in "early-stage" diagnoses has not been followed with a decline in advanced breast cancers, as would be expected if early detection was the key to stopping progression. Indeed, rates of recurrence are 20 to 30 percent even 15 years or longer after diagnosis. The average prognosis for people whose cancer has spread to distant organs is only one to three years. There are approximately 40 thousand deaths from breast cancer (women and men) year after year. While we have seen some decrease in mortality rates in 30 years of screening, it appears that much of this improvement stems from better treatments, which includes less toxic radiotherapy and chemotherapies.
In 2009, the United States Preventive Services Task Force (USPSTF) recognized the limitations of screening mammography in reducing deaths from breast cancer. Instead of recommending screening healthy women every year beginning at age forty, they now advise screening every two years and only for women ages 50 to 74. In addition to few lives being saved as a result of screening, the updated and systematic review found evidence of harm, as it leads to overdiagnosis and overtreatment in one in three cases. If 40-year-old Robach had followed the USPSTF protocol she would not have been diagnosed with breast cancer, seemingly lending force to the belief that women should get screened at a younger age. Regardless of what we would like to believe about screening healthy women or the small studies announced periodically that seem to support the practice, however, t he most rigorous studies do not find adequate benefit to universal screening and recommend instead individualized, informed decision making based on specific benefits and harms.
" I want to be at my daughters' graduations. I want to be at their weddings. I want to hold my grandchildren ," Amy Robach says ( People).
Rather than telling the public about the complexity of breast cancer biology, differences in treatment outcomes based on that biology, and the risks, benefits, and limitations of screening technologies, the public keeps hearing the drum beat of early detection, saved lives, and how a breast cancer diagnosis brings out the best in people. Robach's story is no different. She wants to believe that mammogram saved her life. She wants to imagine a long, healthy life and a happy future with those imagined grandchildren. Who wouldn't? Many of the women who get mammograms want to believe it too.
But should a personal belief system or individual way of coping supplant evidence based information? Should entertainment media disseminate health information within dramatic stories and parallel upbeat messages that obfuscate rather than clarify the biomedical uncertainty that is likely to confront almost all of us at some point in our lives? When information and evidence is withheld, taken out of context, or castigated by virtue of its disagreement with common beliefs, individuals have little opportunity to consider for themselves how to make sense of complex health information and shifting protocols.
For all we do not know about breast cancer (i.e., what exactly causes it, how to prevent it, how to keep it from recurring, how to keep people from dying from it if it spreads), there are things we do know. Breast cancer is complex. It stems from multiple causes, some of which include radiation, carcinogenic chemicals, and cancer promoters such as endocrine disrupting compounds . There are at least ten subtypes of breast cancer that behave and respond to treatments differently. One-size-fits-all treatment does not work. Mammograms do not prevent breast cancer; nor do they guarantee that the cancer found on a mammogram (if it is found on a mammogram) is indolent, lethal, or somewhere in between. Acknowledging these complexities would not only help to shift the breast cancer paradigm, it would serve those who want to be well informed.
Let's say for the sake of argument that Amy Robach turns out to be right. She is treated for breast cancer and lives out a normal life expectancy for a white woman of her age, an average of about 80 years . If this is the case, then we could indeed call Ms. Robach lucky. Not lucky that her producer persuaded her to have that on-air mammogram in 2013. But that she happened to have one of those types of breast cancer with the particular biology that responded to treatment. Many women and men are not so lucky.
Dr. Gayle Sulik is the author of Pink Ribbon Blues: How Breast Cancer Culture Undermines Women's Health. More information is available on the book's website.
© 2013 Gayle Sulik, PhD ♦ Pink Ribbon Blues on Psychology Today