But did it really save her life?

Amy Robach, an anchor on Good Morning America, underwent a bilateral mastectomy today because she was diagnosed with breast cancer following a live, on-air mammogram last month. She credits that mammogram with saving her life.

Robach is a 40-year-old  mother who lives an active, healthy lifestyle and has no family history of breast cancer. Her diagnosis came as a tremendous shock because she had no symptoms or reason to think she was anything other than the picture of health. She wants to fight her cancer as aggressively as possible. I know exactly how she feels. I too was 40 years old when I was diagnosed. My kids were 8 and 10. I lead an active, healthy lifestyle. I opted for a “scorched Earth” attack on my cancer.

I’m in no way challenging her decisions or judging her motivations, because hers are the same mine were. At the time I was diagnosed, my one and only goal was to rid my body of the cancer so that I could spare my kids the horror of watching their mom die before her time. I was willing to take the most aggressive road in exchange for a cancer-free life.

What I am challenging, however, is the rampant, panacea-esque assumption that routine mammograms save lives. Everyone loves a “feel good” story, and no cause stirs up quite as much “feel good” stuff as breast cancer. Wrapped in a pink ribbon, glitzed and glammed to high heaven and jacked-up as feminine and pretty, breast cancer is the cancer. All the cool celebrities are getting it, and everyone loves to hear that more “awareness” and more screenings mean more lives saved. We hear much of celebs being brave in the face of a breast cancer diagnosis, yet we learn little of whether their cancer warranted the treatment they chose.

While the “mammograms save lives” story makes people feel good and likely sells a whole lot of airtime, it’s not exactly true. But we want to believe it, despite scientific evidence telling us otherwise. While the evidence is sound, how many women opt out of a mammogram because they know that the routine screening has little to no impact on mortality? Conversely, how many women are diagnosed with relatively harmless breast cancer yet choose the most aggressive treatment? I know one such woman, for she is me. I am her. I knew my form of breast cancer was not terribly threatening, and I was provided all the stats & facts & figures and options to support that. Yet my gut instinct was to scorch that Earth.

A 2012 New England Journal of Medicine study looked into whether screening mammograms has had an impact on breast cancer mortality. After culling through 30 years of statistics, the conclusion: screening mammograms increase the cases of early-stage breast cancers that are detected, but that detection of advanced breast cancers has not changed.

Because the number of cases of advanced-stage breast cancer has not changed in 30 years of routine screenings, researchers concluded that mammograms are not successful in saving lives. Studies in the United Kingdom, the Netherlands, Italy, Switzerland, Norway, and Australia have come to the same conclusion.  One thing that has changed during the last 3 decades: increased diagnoses and surgeries.

This Nautilus article echoes the 2012 NEJM study. About Robach’s on-air mammo, author Amos Zeeburg says:

“The [Good Morning America] episode was presented as a triumph of medical science, an even more compelling push to get tested: Robach had no idea she was in grave danger, the screen had saved her life, and it might do the same for any woman watching. [Robach said] ‘If I got the mammogram on air, and if it saved one life, then it’s all worth it. It never occurred to me that life would be mine.’ It’s an inspiring conclusion, and it certainly makes for great TV, but the show’s lesson about screening mammograms is highly misleading. In a world of limited medical resources, it may even be harmful.”

So what’s a woman to do? Our doctors recommend a baseline mammogram annually starting at age 40. Celebs implore us to get our mammograms. Every October there’s enough “awareness” to scare the bejeezus out of a normally rational woman. Every time we turn around, someone else we know — in real life or from TV — is diagnosed with breast cancer, and everyone believes that early detection saves lives.

Nautilus author Zeeburg says: “The big problem with screening is that it tends to find cancers that are not very dangerous—’indolent’ ones that don’t grow quickly, will never metastasize to other organs, and might even go away on their own—while missing the truly deadly ones, which grow and spread too fast to get caught in any case. ”

Noted breast cancer docs agree.

Dr Susan Love said, “I really don’t think we should be routinely screening women under 50. There’s no data showing it works.”

And for women younger than 50 who follow the rules and get a yearly mammogram, Dr Love says “It’s radiation without much benefit.” She notes that most European countries recommend screening every other year, and their breast cancer mortality rates are no higher than ours.

Dr Silvia Formenti, head of radiation oncology at NYU’s  Langone Medical Center said the emphasis on mammograms for everyone might have given the public the impression that screening could prevent cancer. “It’s a giant misconception,” she said. Furthermore, she’s not a fan of overtreating indolent cancers but worries about the diagnoses “turn them into cancer patients and erodes their peace of mind forever. We take away the innocence of being healthy and not having to worry about cancer. The psychological cost of becoming a cancer patient is underrated.”

Amen, sister.

But all these dissenting voices don’t clear up the question women face regarding mammograms. After my OB-GYN felt a teeny-tiny lump, she sent me for a diagnostic mammogram, which led to a couple of biopsies and then diagnosis. My cancer was determined to be indolent, yet I still chose the scorched-Earth option. Maybe I wouldn’t have reacted as surely and as strongly had I not watched my mom die of cancer and if I didn’t feel a gigantic, never-ending void in my life after she died. But how much does the constant barrage we receive about early detection saving lives contribute to such sure and strong decisions about our course of treatment? I went into my bilateral mastectomy eyes wide open and perhaps too well-informed about what I was getting myself into (absent the post-mastectomy infection that ended up being waaaaaay more perilous than the actual cancer). I went in feeling 100 percent certain about my decision. Yet now I wonder: what would have been the risk of just watching that teeny-tiny lump and seeing what, if anything, changed from year to year? How risky is it to live with a teeny-tiny lump of indolent breast cancer for years?

How many of us would be willing to play those odds if we weren’t barraged with messages about mammograms saving lives?

I don’t know the answer. I can’t say if I would have changed anything about my scorched-Earth policy; hindsight is perfect, after all. But I do wonder how much the “early detection” and “mammograms save lives” rhetoric contributes to the decisions we do make when facing down the pink beast.

I think Zeeburg says it best: “The surprising inefficiency of mammograms doesn’t mean they need to end, but that they should be reasonably evaluated, not treated as our divine shield against cancer, administered to everyone with breasts, and paired unquestioningly with the most aggressive treatments available.”

11 Comments on “But did it really save her life?”

  1. Eddie says:

    I can not tell you what would have happened if you had chosen a different course of action. Nor can I tell you what would have happened if my dad had never smoked. I can tell you that “what if” is a rabbit hole you do not want to go down. I can also tell you that your course of action was right for you and you are cancer free. As for others, they need to do the same as you did and make an informed decision that they can live with. Emphasis on live.

  2. mmr says:

    “The psychological cost of being a cancer patient is underrated.” I love you, Dr. Formenti, for that statement.

  3. Trevor Hicks says:

    Brilliant job discussing what is a very challenging issue. We all have the instinct to do everything possible even when some situations are hopeless much less when aggressive treatment makes a situation seem curable. And no one likes a statistical rationale for declining treatment – who wants to be the outlier that gets sick and dies?

    Also, don’t sell your cancer short. Though it was relatively benign in many respects, the tumor was invasive, there were micro mets in a lymph node and worst of all the surgical biopsy revealed that both breasts were riddled with many tumors not detected even by the CAT scans. There is no question in my mind that anything less than a bilateral mastectomy would have been inadequate treatment for you. But we got a very weird kind of lucky, those scarier details were not discovered until after the surgery. The really sobering thougt is that a fully rational decision based on the information we had before your surgery might have led to less aggressive treatment and much worse scares down the road. You could have been that outlier.

    This is one of the harshest realities of a breast cancer diagnosis. You’re forced to play statistical betting games with incomplete information, the outcomes are never certain even years later and the stakes are as high as they can be. And even after suffering the most gut wrenching choices and treatments, if you’re lucky you get years worth of second guessing those choices as a nice complement to a thoroughly unpleasant drug regimen. Did you do enough? Too much? My answer is: cancer sucks. Keep on truckin’ girl, nobody does it better.

    • David Benbow says:

      Trevor is absolutely right. If you had followed the statistical advice, you wouldn’t have known how widespread your cancer was. Your scorched-Earth surgery revealed that you were the outlier. Mycobacterial infection or not, you made the right decision.

  4. billgncs says:

    cancer is such a hard thing to make rational decisions about…

  5. David Benbow says:

    Many people would not recognize the distinction between mammograms detecting cancer early and mammograms actually saving lives. This is a thought-provoking topic. All I know is that, until I’ve walked a mile in your shoes, I wouldn’t dream of telling someone they should rely on statistics to decide on their treatment. Everyone needs to look at their own situation and go with their gut.

  6. I used to do peer support for young women diagnosed with BC. The panic expressed was consistant woman to women. Everyone – at the very least – wanted it out immediately. I think that fear is a big hurdle to overcome, and certainly influences decisions. Maybe we need more Stop and Watch campaigns? Or don’t panic buttons?

  7. […] cancer following a live, on-air mammogram last month. It has sparked a heated debate on what the Pink Underbelly calls “ the rampant, panacea-esque assumption that routine mammograms save lives”. […]

  8. Drink2that says:

    I’m afraid I can’t comment because I haven’t walked in your shoes…or even come close. But and this is big BUT, I would look to someone like you to lead the way if I ever do end up on that journey.

  9. Debbie says:

    Yes the mammogram saved her life.. For Today. There is no guarantee after any treatment period that is over with. Just ask any Metastatic Breast cancer patient. Would be nice if October spent more time and money on them.

  10. […] learn the hard way. Despite the Pollyanna snow job by pink-ribbon celebs like Giuliana Rancic and Amy Robach, having a mastectomy does not mean you get new boobs. Not even close. In this article, […]

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