An open letter to Good Morning America News Anchor and breast cancer “survivor,”
Ms. Amy Robach
Dear Ms. Robach,
What a journey you have had recently. From what I read in the press, save the persistent chemobrain, you are feeling well. Congratulations! I am quite familiar with the challenges of treatment and surgery, and getting back to everyday life. It looks like nothing can hold you back!
It ends up we have quite a bit in common.
- Like you, I was diagnosed young and on my first mammogram, when I was 35 years old.
- Like you, I opted for bilateral mastectomy in hopes that my lobular disease might not occur in the healthy breast also. (You know, of course, that bilateral disease is most common in lobular breast cancer, which is what I have.)
- Like you I underwent chemotherapy and tamoxifen (5 years was the standard back then).
- Like you, chemobrain persists.
It seems we have some differences as well.
When it comes to questioning the value of mammography, the New York Daily News quotes you as saying:
“It makes steam come out of my ears, and I have a couple of different responses. First, mammograms aren’t perfect, but they’re what we’ve got, and a mammogram did save my life and if I had waited until I was 50 years old as they suggest, I don’t think I would have been around much longer. So while everyone’s cancer is different, mammograms and self-exams do save lives,”
I have felt that way myself, and we are not alone. There is an intuitive sense that waiting longer means cancer spreads further. Science, however, doesn’t bear that out. However, in April 2014, Lydia Pace, MD, MPH and Nancy Keating, MD, MPH of Brigham and Women’s Hospital in Boston co-authored a report published in JAMA in which they conclude that the benefits of mammograms are “modest,” whereas the risks are “significant.” Overall, mammograms are responsible for a reduction of breast cancer mortality rates by about 19 percent, even lower in young women. (This journal article is behind a paywall and is not accessible to patients; my summary is based on the published abstract.) A month later a prospective Norwegian study found that in order to save one life, 368 women (ages 50-69) would have to be screened.
According to the National Cancer Institute, there are, indeed, harms inherent in breast cancer screening. Let’s take your age: 40. Per 10,000 women screened over ten years, NCI attributes 1-16 breast cancer deaths over the next 15 years averted by mammogram. Of course, we can agree that every one of those lives is critical – and touches countless more lives, to be sure. But think about the 6,130 who get false positives and the 700 who have unnecessary biopsies. Imagine their anxiety and that impact on their lives and the people who surround them.
I’m not saying mammography is bad, and as you say, it’s what we have. But let’s be thoughtful about it. We know that “catching it early” doesn’t necessarily make for a good prognosis. Many scientists believe that some cancers will spread and others will not, no matter how long they are in the breast. Many scientists also believe that if you are going to metastasize it is likely to have happened before initial treatment begins.
My thinking: Let’s reserve early mammography for those who are at a high risk. Let’s not expose ourselves to the radiation or anxiety that mammography offers any more than necessary. And let’s not delude ourselves to thinking the annual mammogram is the answer, or perpetuate that myth.
The risks of overtreatment are hardly ever discussed publicly. When we add fuel to the visceral fear that breast cancer brings, we don’t always make science-based decisions. So when we lead people to believe mammography knows all, we cultivate a sense that when there is a positive finding we must act, act immediately and act aggressively. Our animal survival instinct kicks in, and there is little we won’t endure when we believe our very life is threatened. The truth, however, is that countless people are overdiagnosed, and undergo harsh chemotherapy regimens and extensive surgeries – both with their own inherent side effects and risks – with little to no benefit on their overall survival. Imagine all you’ve been through, and then knowing it doesn’t make one bit of difference. You can, of course, see why the victory over breast cancer celebrations are necessary – we need to reassure ourselves that we suffered for a reason, even if we didn’t.
Let’s take, for example, DCIS. You can’t catch cancer any early than this “Stage 0” diagnosis, where cells have yet to even leave the milk duct where they developed. While I can’t prove it, the trend I am personally seeing is that women diagnosed with DCIS are seeking aggressive amputations of their breasts and even ovaries to avoid the possibility of future disease. It is a fact that Stage 0 patients can and do metastasize – and it’s likely some do so before their DCIS is detectable. The same is true of women who have hereditary markers for cancer (BRCA1 and BRCA2 positive) – and these women have no discernible disease; rather they have a higher risk of disease.
Each of us must make our own decision when faced with these challenges; we are the only ones who can know what’s right in our personal circumstances. However, we all make decisions in a context, and with the information we have. When much of that information comes from the media – and when that information is not based in science – we make it impossible for a woman and her doctor to make an unbiased decision about her care.
ON FIGHTING CANCER
According to Avoiding the Breast Cancer ‘Warrior’ Trap by Peter Bach, MD, you recently spoke at a fundraiser for Gilda’s Club. From what Dr. Bach writes, the heart of your message was about “the fight” against breast cancer. He states,
In her (Amy Robach’s) interview in the magazine of the Federal Government’s National Institutes of Health, Robach declares that “there are nearly 2 million breast cancer survivors in this country, and we are thriving, excelling, living.” Later in the article, she promises that having breast cancer leaves you stronger. Damn near invincible, actually.
I wonder where that leaves me. What do you make of a woman, diagnosed at 35 with a husband and three-year old son, who gave up having more children in case that was to a contributing factor in recurrence, who had the same surgery you had, who likely took a more aggressive chemo than you did, who faithfully adhered to five years of miserable hormonal therapy, and who lived out loud for nine years, advocating for others, evaluating the science, training to serve on peer review panels – only to discover that all the while cancer was lurking deep in the marrow of my bones?
- Did I not fight hard enough?
- Am I a bad person?
- Were my doctors, perhaps, less wise than yours?
- Was it my failure to buy pink boxing gloves, or any other pink crap, to raise awareness?
- Or perhaps I’m just weak, where you are strong?
It doesn’t take strength to stand on a stage and shout platitudes about mammography and fighting hard. It doesn’t take strength to delude yourself into thinking its over. It doesn’t take strength to claim we are all “thriving, excelling, living” or to imply that we are all stronger for having lived through it.
It takes strength to wake up every day knowing we have no cure. It takes strength to parent a teenager who, given the odds, you will never see graduate college, knowing it is unlikely you will dance at his wedding, or hold a grandchild. It takes strength to go through treatment after treatment, and as each one fails you, return for something harsher. It takes strength to sit on those peer review panels and read about potential therapies that are 10-20 years down the road, knowing your life expectancy of about 24 months has already been exceeded. And it takes incredible strength to perpetually shout into an all-pink crowd that they have failed to invite those most desperate for support to their pink party. I know, never fun to have a downer around, and it’s easier to shove aside those who are living proof of their greatest fears.
It would take strength to take a stand against the rosy pink masses and lend your voice to those who are routinely silenced. The “survivors” have plenty of celebrity spokespeople. The metastatic breast cancer community does not have a single one. Being that person takes strength.
ON METASTATIC BREAST CANCER
Speaking of metastatic breast cancer, or MBC, do you know how little we know?
- We don’t know how many are diagnosed because unless one is diagnosed at Stage IV, we are already in the cancer registries and don’t get updated recorded again.
- We don’t know how many of us are living with MBC for the same reason.
- We do know that about 30% of breast cancer patients will eventually metastasize. We know they will come from every single stage, including Stage 0, and we know that it can literally take decades from initial treatment before MBC shows up.
- We do know that approximately 40,000 Americans will die from MBC this year, and that number hasn’t meaningfully changed in over a decade.
- We also know what will save our lives: research.
- We do NOT know why, when MBC accounts for 30% of patients and 100% of breast cancer deaths, our funding hovers below 5% of all breast cancer research funding.
Ms. Robach, I am thrilled that you have completed your treatments, that you appear to be feeling great and that you’re back on the job. No matter how sick we get, there is hope with each person who survives despite our disease. However, please don’t fool yourself into thinking breast cancer is in your past. It is your present from now on. You will go through scans and other tests that will raise anxiety you’ve likely never experienced before. You will have sleepless nights when you wonder if and where it is lurking. You may have side effects, like chemobrain, that stay with you for the rest of your life. And you may, like me, be one of an unknown number of women who progress to Stage IV.
I urge you, as a woman, as a survivor and as a journalist, to look deeper than the hype. You have an incredible platform with opportunities that individuals living with the disease rarely have. So, so many have, in their celebration of being “cancer free” have left us behind. Consider a different path…I would love to hear from you!
President, METAvivor Research and Support*
*All opinions are my own and do not necessarily reflect those of METAvivor.