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.”
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.”
Today’s mission in the Health Activist Writer’s Month Challenge: Create a “care page” – a list of your best resources that someone who is newly diagnosed could go to when starting to advocate for themselves or a loved one.
Consult the mainstays such as Breast Cancer Action, and Think Before You Pink, and Dr Susan Love Research Foundation, and breastcancer.org, and The Rose. Consulting “Dr Google” once a diagnosis has sunk in is something most people do.
Follow a blog that appeals to you. Whatever flavor you prefer — spiritual, snarky, research-oriented, or off-the-cuff like this little blog — there’s a blog out there to meet your needs. Among these blogs, you’ll find posts such as this and posts such as this with practical advice from those who’ve been there. Much of this information is rather like on-the-job training; you don’t know what you need to know until you need to know it. Take the hard-won wisdom from those who have walked this walk before you.
My best piece of advice, in a sea of good advice, though is this: Do what you believe in your heart of hearts is best for you. Whether a prophylactic bilateral mastectomy instead of a lumpectomy, whether undergoing reconstruction or flaunting the flat & fabulous look, or whether pursuing a second or a third or a fourth opinion. Follow your instincts and listen to your gut.
I’m not sure “stagnation” is an actual word, but I like the alliteration so it stays. It’s my blog, after all, and I can make up words if I want to (but I’m still not comfortable ending a sentence with a preposition, hence the parenthetical aside).
Ok, with that out of the way…on to the news.
Susan Love announced that she’s been diagnosed with leukemia.
My immediate response to this news: Dammit.
Dr Susan Love is someone I respect and admire, and she’s done more for the breast cancer cause than a room full of Komens, IMHO. Her book, Dr Susan Love’s Breast Book, is considered the bible for those with breast cancer. Her focus is on research, not ribbons. The mission statement for her organization is this: “The Dr. Susan Love Research Foundation works to eradicate breast cancer and improve the quality of women’s health through innovative research, education, and advocacy.” She mobilized the Army of Women to get women of all ages, races, and stages involved in research. I’ve participated in several AOW studies, from simple online surveys to blood tests, and believe wholeheartedly in what she’s doing. Love says, “The key to ending breast cancer is to learn how to stop it before it starts.” YES! She also says,
“I have spent my whole life working in the field of breast cancer. At this point I am frustrated that we are still doing the same treatments with about the same results as when I started thirty years ago. Now that we can get to where breast cancer starts we have the opportunity to eradicate it. I am excited and impatient. The road is clear. We can go slowly or quickly, but everyday that we delay another 592 women will be diagnosed and 110 will die. The cost is too high to hesitate. This is our job not our daughters’, granddaughters’, nieces’ or nephews’. We can do it and we have to do it!”
When Love announced her diagnosis yesterday, she was resolute in facing the bad news, saying “As many of you know, I have never shrunk from a challenge. I plan to bring my indomitable drive and energy to overcoming this and will be back to work as soon as possible.” Go get ’em, Susan!
Next, the science news. A 45-year-old Bay Area man has been cured of HIV and the cause of his cure is a bone marrow stem cell transplant. My friend Katie at Uneasy Pink sums up the science of this breakthrough much better than I; check it out. Long story short is that the guy, who tested positive for HIV in 1995, also battled leukemia and underwent a bone marrow stem cell transplant in Berlin in 2007. The donor was immune to HIV, and as those cells were transplanted, so was the immunity.
Famed AIDS researcher Dr. Jay Levy, who co-discovered the HIV virus, said this case opens the door to the field of “cure research,” which is now gaining more attention. “If you’re able to take the white cells from someone and manipulate them so they’re no longer infected, or infectable, no longer infectable by HIV, and those white cells become the whole immune system of that individual, you’ve got essentially a functional cure.”
I am all kinds of fired up about this incredible news.
There is great potential, and the idea of cure research is exciting. I would love to see if spill over into breast cancer. As Katie puts it, “I understand that HIV/AIDS and cancer are very different diseases. But look at the progress that has been made over several decades. In 1983, the idea that we would be deciding whether someone was cured or not of AIDS, that we would be debating how few cells mean cure, was unthinkable. Back then, virtually everyone who contracted AIDS died of it, and in about 9 months from diagnosis. Now the average survival time after diagnosis is 24 years.”
Survival time of 24 years. Remember when AIDS first hit the scene in the early 1980s, and a diagnosis was the same as a death sentence? Now, 30 years later, AIDS experts are talking about cure research? Amazing.
Why isn’t this kind of thinking being applied to breast cancer research?
I’m guessing the reasons are many, but can’t help but think that one reason is because we’ve made breast cancer so pretty. It’s one of the most heavily funded cancers in terms of research, yet as Dr Love points out, treatments and results are the same now as they were 30 years ago. I know, I know — cancer is incredibly complex and varied, not just in terms of the different types (breast, colon, etc) but within each type, there are immense differences. Then there are the differences in each person who’s diagnosed, as well as the differences in each cell. I don’t expect a panacea, but I do expect cure research.
It’s funny — not ha ha funny but peculiar — that in trying to de-stigmatize breast cancer, we’ve ended up trivializing it. The glamor disease is marketed as rosy, fun, and celebratory, when in fact, it’s deadly. And in the cases in which it doesn’t kill its victims, it nonetheless maims them and messes them up in untold ways. Even the “lucky ones” who “caught it early” and “enjoyed the best possible outcome” are scarred, physically and emotionally.
Do we really need ads like this?
What does this accomplish, exactly? As a woman, this makes me mad. As a woman diagnosed with breast cancer, it infuriates me. And as a woman who has undergone reconstruction and is facing the hard truth that no amount of surgery will ever restore what I once had, it makes me want to strangle someone with my bare hands. Maybe I’ll start with those models then move on to the jackass behind the ad campaign.
If you zoom in on this dumb ad, it’s not entirely clear what’s going on here besides lots of skin, perky breasts, and a hand. This is what passes for breast cancer “awareness?”
Did the ad execs behind this think the hint of lesbianism would sell? Did they consider that the woman of color in the middle would be completely shafted should she be diagnosed, because black women die from breast cancer far more often than white women?
Then there’s the text of the ad: Connect, communicate, and conquer? Could this be any more vague and vapid? What the hell are they even selling? I had to look closely and read the fine print to see who put this ad out there. It’s on the very bottom of the ad — the Breast Cancer Awareness Campaign, which is run by Estee Lauder. Again, what the hell are they selling? Remove the pink-ribbon bracelet and this could easily be an ad for a plastic surgeon hawking breast augmentation.
I’ve had it with this side of the “awareness” campaign. Can anyone tell me what this kind of marketing does to actually help our cause? I know the research dollars have to come from somewhere, but surely we don’t need naked breasts to plead our case.
These last two are my favorite. The boxing girl, who I’ve written about before, because the idea of being a fighter when it comes to breast cancer is so pervasive, and the flip side to that idea being the ones who die from this wretched disease somehow didn’t fight quite hard enough and “lost the battle.” The “Expose the Truth” ad, from the Breast Cancer Research Foundation, because the “truth” has nothing at all to do with the model they chose to represent their message. The truth is, ads like these perpetuate the idea that breast cancer is a sexy, pretty disease.