Amy Robach Story Spreads Heartfelt Misinformation About Breast Cancer

amy-robach-300On November 11th, Good Morning America correspondent Amy Robach announced that the on-air mammogram she had in front of millions as part of Good Morning America’sbreast cancer awareness promotion, ended up getting her a breast cancer diagnosis. There are still few details about the actual diagnosis, other than the fact that 40-year-old Robach opted for a double mastectomy (instead of the less invasive lumpectomy and radiation), that she will undergo chemotherapy due to an affected lymph node, that she had precancerous cells in the other breast, and that during the mastectomy the surgeon found another tumor that had been missed in the previous scans.

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.

Evidence Denied

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, the most rigorous studies do not find adequate benefit to universal screening and recommend instead individualized, informed decision making based on specific benefits and harms.

Wishful Thinking

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.

Related:

Published on Psychology Today, Dec. 10 2013 »

© 2013 Gayle Sulik, PhD ♦ Pink Ribbon Blues on Psychology Today

Be Sociable, Share!

7 comments to Amy Robach Story Spreads Heartfelt Misinformation About Breast Cancer

  • Linda

    Amen! Well written article. I myself was diagnosed through mammography with a grade 1, stage three triple negative nodule, 1.2 cms, no vascular spread, no nodal spread. Due to the potential aggressiveness of my particular type of cancer, even though it was caught “early” – my oncologist and I threw everything we could at it as I had only this one chance at killing the beast. While the treatments I underwent for 10 months were horrendous, and I wouldn’t wish them on an enemy, I am glad that the nightmare I endured has given me almost 5 years of remission. I am constantly bombarded by friends and family (and I know that they mean well) that cannot understand why I still have fear and doom over my “early” diagnose and treatments since I am obviously “cured.” They just don’t understand that one is never “cured” of invasive breast cancer and that this ugly beast of a disease can rear it’s ugly head at any time. While I most certainly have moved on from that polarizing diagnose and year of treatment, I will forever be looking over my shoulder. As a wise doctor once said to me – “You may not die OF this cancer, but you will definitely die WITH it. As people are so quick to retort that one could be hit by a bus tomorrow, the difference for me is that somewhere out there is a bus that knows where I am at any given time.

  • Jay

    This article makes some very very valid points. To speak in such generalities of the breast cancer diagnosis, especially in such a public forum is a bit misleading if not irresponsible. I pray for Ms. Robach and other women battling this condition. It would have been even more helpful if she shared her EXACT diagnosis with the public; was it a lobular or ducatal CA? was it invasive or non-invasive? what stage? I, II, IIa? IIb? All of that makes a difference in terms of treatment regimen, prognosis, etc. The diagnosis, in addition to the information already shared by Ms. Robach would have been extremely helpful to other breast cancer patients because these patients could compare “apples to apples.” Likewise, patients could make some connections to their own condition. Every breast cancer diagnosis is different, as are the treatment plans. It could prove very disheartening if a patient went to her doctor and said, “Amy Robach is doing ‘this and this’…why can’t that work for me?” Thoughts and prayers to all those battling this condition. You are all stronger than you think!

  • Thank you, Linda and Jay for your comments.

  • dawn

    Amy shared her experience. Many women postpone mammograms and don’t find the tumor until too late. She did NOTHING but aid the fight whether you see it that way or not.

    I really don’t understand your objection. Sure, we all know that breast cancer is complex, has many different causes and pathologies. Also different grades, and different hormones that fuel its growth.

    I guess I don’t see the reason why you want to criticize someone that just had a life altering diagnosis and tried to help others through education and information.

  • Thank you for commenting, Dawn. The problem with Robach’s sharing is that the education and information she shared was incomplete and lacked the context necessary to really help the public to understand the decision-making process. Since she is a public figure, her personal experience carries a different weight, and since she is a reporter, she also has a responsibility to consider the breadth and depth of knowledge about the topics she discusses publicly. The criticism is not of her as a person, but a trend of misinformation that, unfortunately, diminishes awareness. Her personal decisions are indeed her own.

  • joinourloop

    Very interesting article.
    A lot of what you say I agree with on principal.
    On the other hand, as a broadcast journalist and breast cancer patient, trying to explain that biology trumps staging is really difficult.
    Peoples eyes glaze over.
    Even other health reporters.
    It is a hard sell.
    I did do a broadcast story about a woman with triple negative breast cancer. So at least I did get some biology in there, but it’s not an easy fit on air.
    Also, we are talking about People Magazine in which everything is shorthand.

  • Thanks for your comment @joinourloop. Funny, I agree with you too, though I think you just came up with a good headline: “biology trumps staging.” The public needs to be media savvy and know shorthand when they see it. Yet there do need to be stronger criteria on the journalistic side when it comes to giving people health information. Health News Review is working hard on this, so there could be a shift. I’m hopeful. — gs

To speak her truth, she needed to give her words and identity away, to a trusted poet and friend @stevedavenport breastcancerconsortium.net/ov…

“Pink Ribbon Blues”

Paperback includes a new Introduction on fundraising controversies and a color insert with images of, and reactions to, the pinking of breast cancer (2012).


Praise » 

Flyer »

Press Release »

Hardback Cover »

Paperback Cover »

Request Review Copies »

Order the Paperback »

* GAYLE IN THE MEDIA *

"Seeing clearly through the pink haze" Toronto Sun

*Sad face*: Being happy does not help you live longer" New Scientist

How should we address breast cancer when norms continually change? The Guardian

Your Fun 'No Bra Day' Photos Are Overshadowing Terminal Breast Cancer Patients Broadly

Backlash against “pinkwashing” of breast cancer awareness campaigns BMJ

Breast Cancer to Rise 50 Percent by 2030? Hey, Not So Fast! Health News Review

Breast Cancer: The Flaws in the Cause iafrica.com

How to Make the Biggest Impact With Your Breast Cancer Donations Money

The Very Pink, Very Controversial Business of Breast Cancer Awareness Racked

NFL, Pink Ribbons Not Enough to Win over Women CNN

3 Questions We Need to Answer for Breast Cancer Awareness Month Chronicle of Philanthropy

The problem with National Breast Cancer Awareness Month Women's Health Magazine

Pink Ribbon Envy: Living with an Uncool Cancer The Nib

A Year After Bombings, Some Say 'Boston Strong' Has Gone Overboard NPR, All Things Considered

Canadian Mammogram Study KCRW, NPR Affiliate

Time to Debunk the Mammography Myth CNN

Breast Cancer: Awareness, Activism & Pinkwashing NPR Charlotte

Buying Pink Al Jazeera's The Stream Watch »

The Pink Backlash Orlando Sentinel

Why Jolie's Test Costs So Much CNN

Preventative Mastectomies: Disease and Deception BlogTalkRadio

Angelina Jolie and the 'Breast Cancer Gene' KCRW

Our Feel-Good War on Breast Cancer The New York Times Magazine.

The Story Behind the Pink Ribbon Campaign Sisters Talk Radio

WISH Interview Women's International Summit for Health

Making Cancer About The Patient, Not The Body Part CBS Pittsburgh

Sexy breast cancer campaigns anger many patients USA Today

The perils of pink The Daily

Komen pink campaign creates breast-cancer blues for some Dallas Morning News

A yellow flag for the NFL's pink New York Daily

Gayle Sulik named #7 in SharecareNow’s Top 10 Online Influencers in Breast Cancer

Breast cancer cancer causes so easily derailed Philly Inquirer

Komen Charity Under Microscope for Funding, Science Reuters

The Fight Against Cancer - And Abortion? Salon.com

Susan G. Komen For the Cure defunds Planned Parenthood. In Deep with Angie Coiro

Amid Breast Cancer Month, Is there Pink Fatigue? NPR's All Things Considered

How is Breast Cancer Culture Undermining Women's Health? America’s Radio News Network

Pink Ribbon Culture and Breast Cancer The Kojo Nnamdi Show

The Big Business of Breast Cancer
Marie Claire

Does Breast Cancer Awareness Month Crowd Out Other Diseases? Slate

Pink Inc. Has Many Starting to See Red The Sacramento Bee

Get Your Pink Off Ottawa Citizen

Komen Pink Ribbons Raise Green and Questions USA Today

** MORE MEDIA LINKS **
** MORE RADIO INTERVIEWS **