Author Archive

Mammography’s Failings: Rage Against the Machine

I was dismayed but not surprised by the recent news of mammography’s failings. As most of you know, per the NYT “one of the largest and most meticulous studies of mammography ever done…added powerful new doubts about the value of the screening test [mammography] for women of any age.”

But what shocked my socks off was the headline appearing in the same paper less than a week later “A Fresh Case for Breast Self-Exams.” The upbeat article highlighted what the writer called the study’s “nugget of hope,” which was that physical breast exams may be “as good as or better than regular mammograms.”

I hear the ’80s calling. They want their breast cancer screening method back.

Previous studies indicate breast self-exams are no better than mammography when it comes to stemming the tide of breast cancer deaths. I covered the topic for Time in 2008. The Cochrane Collaboration (an international organization that evaluates medical research) had just reviewed studies of breast self-exam that involved nearly 400,000 women. Their conclusion? Breast self-checks had no benefit. 

So, before we roll back the clock, before we go back to touching our breasts out of fear, before we give women deja vu, I’d like to hit the pause button.

Can we all please take a collective moment of silence to mourn the failed promise of mammography?

Regardless of whether you choose to believe in mammography (like Amy Robach over at ABC) or you are a dubious science reporter twice screwed by breast cancer (like me), last week’s news was a devastating blow.

Then I’d like to break the silence with a giant primal scream. Because when I think of the tens of billions of dollars spent chasing the “early detection myth,” I can’t help but think of how those billions might have made a difference for the hundreds of thousands of women who are no longer with us. And that makes me hoppin’ mad.

So. Please take a moment of silence and then follow it up with a big scream.

On Pink Washing: Dear Food Makers, Please Shut Up.

Pink washing health claims on food packaging are obnoxious. They are confusing, misleading, and (often) inaccurate. As a science journalist, I know that 99.9 percent of these health claims are hogwash, and I find it morally offensive that food marketers prey on people’s fear of disease to sell products. I actively avoid buying products with health claims or pink washing. So, imagine my surprise when I opened a new container of miso and found a giant health claim lurking beneath the lid. Sneak attack!

MisoSoup

Nothing kills my appetite more than a pink-ribbonly reminder of my mortality. Thanks Mr. Miso!

I will give them a tiny prop for including a study citation, even though its presence could be construed as manipulative because it adds superficial credence to the claim. So, I walked my anger right over to PubMed and looked up the study. A tiny part of me (the sucker part) hoped the health claim was true. But a much bigger part of me (the pompous part) wanted to feel “right” and, therefore, justified in my anger. Guess which part won?

Here’s the miso dish: In 1990, 21,000 Japanese women filled out diet questionnaires that included a question about miso soup. (BTW: Diet questionnaires are notoriously inaccurate because, really, who can remember what they ate for breakfast? Much less for breakfast six weeks ago?) Researchers followed the women for nine years and charted how many got breast cancer. In the end, fewer cases of BC popped up in those women who (reportedly) ate 3+ bowls of miso soup a day.

A few caveats: the study’s small sample size means its accuracy is suspect; miso’s magic only applied to postmenopausal women (bummer for me); I live in the West, not Japan, so my confounding factors are enormous; and, finally, who eats 3 bowls of miso soup a day for years on end? Not me.

When it comes to health claims, even those with citations, don’t be a sucker. Health claims on food packages are nothing but savvy marketing with a scientific sheen. I can only hope that, if we all vote with our dollars, food makers will get the message that we don’t want our fears manipulated at the grocery store.

Yoga, Cancer, and Peace

While undergoing active treatment for breast cancer, I did yoga like a drug. For me, yoga worked better than the anti-anxiety prescription I got from my doctor, better than the marijuana-laced olive oil I got from a generous neighbor.

Yoga is not what you think. Forget power flow. Forget sweating and bending and balancing and contorting. Yoga is breath. Yoga is being fully alive in your body. Yoga is being brave enough to pull your rattling, smoking, fuming body over, lift by  the hood, and not judge what you see. Yoga is the kindest, deepest reality check you can imagine.

During treatment, I did restorative yoga and gentle flows. Practices spent entirely on the floor.  After active treatment, I moved to Boston and discovered Yin yoga, another gentle practice of long holds and deep breaths. With yoga and the help of a gifted physical therapist, I  regained full range of motion in my radiated arm and shoulder.

This morning I stumbled across a beautiful essay in the New York Times,  by my friend Susan Gubar, called Living With Cancer: Patient Yoga. The sentence that struck me most was the second to last. “With relief, I realized the yoga was teaching me to be patient with my frailties.” Amen sister.

Today, my yoga practice looks nothing like it did before my breast cancer diagnosis. It is soft, not hard. It is resilient, not fleeting. I am no longer the teacher. I am content to be the student. Yoga is my way of meeting my body where it is, not judge it for where it isn’t. I use the practice to come home to myself. Thanks for reminding me Susan, and, to repeat the mantra here:

May we dwell in the heart,
May we be free from suffering,
May we be healed wherever healing is called for,
May we be at peace.

 

Going Flat: The Choice No One Talks About

Why does no one talk about going flat?

I watched the Angelina Jolie breast cancer coverage the same way I watch scary movies — with my eyes covered. As I peeked at the news through fanned fingers, I was pleasantly surprised at how everyone handled themselves. (I’ll save my thoughts on the portrayal of “celebrity madonna figure cuts off breasts for the children of the world” for another day.)

My critique is twofold: One is that the discussion glossed over the pain, complication rates, and loss of sensation across the entire chest (not just the nipples) that reconstructive surgery entails. Two is that there is a far less complicated way to move past a double mastectomy that no one ever talks about: going flat.

Of course, Jolie’s livelihood relies, in part, on her breasts. So I can’t imagine that was an option for her, but it is an option for other women who are considering double mastectomy.

The “save the rack” mentality shared by so many in the breast cancer community can make it difficult for women to see a way forward that doesn’t involve reconstruction. In the weeks following my breast cancer diagnosis in 2009, I saw five surgeons. Each one approached me with the assumption that I wanted a new breast at any cost. (More on that in Part 2.)

As a science writer who specializes in women’s health issues, I’ve written extensively about breast cancer. As a patient, I saw how easy it was to go down the road to reconstruction. But I can also tell you that road is paved with the good intentions of doctors and pockmarked with huge piles of shit, most likely left by all those ponies and unicorns prancing around inside the minds of plastic surgeons and women alike.

As I yearned for balanced coverage, I was excited to see last week’s article in The New York Times “No Easy Choices on Breast Reconstruction.” The paragraph below tiptoes as close to the truth as any I’ve seen in mainstream media:

Even with the best plastic surgeon, breast reconstruction carries the risks of infection, bleeding, anesthesia complications, scarring and persistent pain in the back and shoulder. Implants can rupture or leak, and may need to be replaced. If tissue is transplanted to the breast from other parts of the body, there will be additional incisions that need to heal. If muscle is removed, long-term weakness may result.

This paragraph echoes what I’ve been told by dozens of breast cancer surgeons and patients alike. I also experienced the imbalance firsthand. None of the plastic surgeons I consulted said anything about complications, pain, and the possibility of muscle weakness. No one asked if I had a history of back pain (I do) or fused vertebrae (I do) both of which may increase odds of complications, like chronic muscle pain and reduced mobility. The public hears a lot about successful reconstructions, like Jolie’s, but we rarely hear the stories of women who are disfigured and debilitated by reconstruction.

Recently, I was assigned a feature about breast reconstruction for the digital magazine VIV. In that piece, I strove to reflect something more akin to reality. The final magazine feature included most of the following facts and figures:

  • The majority of women—55 percent—don’t reconstruct at all; they choose to either to wear a prosthetic or go without.
  • Women who have immediate (versus delayed) reconstruction are 2.7 times more likely to have a major complication, like tissue death, and are less satisfied with the final result.
  • Among women who choose implants, 30 percent will have complications, such as a hardening of the tissue around the implant (called capsular contraction) in the first year. Within four years that number may exceed 50 percent.
  • The Food and Drug Administration advises women with silicone-filled implants to get an MRI every two years to check for leaks. Not all insurance companies pay for the follow-up scans, which can easily cost a thousand dollars or more.
  • Tissue transfers are extensive surgeries with long, arduous recoveries. They require up to 9 hours in the operating room and up to a week in the hospital, including a day or two in intensive care to monitor blood flow to the new breast.
  • Tissue transfer studies are rare, but in one well-designed trial, 36 percent of women who underwent the most common tissue transfer surgery (called a TRAM flap) had a major complication.
  • A study published in 2010 in the journal Annals of Plastic Surgery found that many women who had tissue transfers felt ill-prepared for the loss of muscle strength, numbness, and extent of scarring.

And, call it personal bias, but I found it reassuring that long-term studies show that 5 and 10 years out, women who had a mastectomy without reconstruction were thrilled with their decision.

I’m glad that Jolie is inspiring women to get tested. The public needs to see smart women empower themselves to get information and act on it. I just wish women had a greater variety of role models to choose from in this realm. Women who chose less-invasive options and are living happily without boobs.

Hormone Blockers: Why 25 percent of us ditch the drugs

Hormone blockers and you.

Last month, researchers at the University of Michigan seemed genuinely surprised when they discovered that 1 in 4 women given hormone-blocking drugs as a continuation of  breast cancer treatment either stopped taking the drugs or never started.

But, if you’ve ever taken these drugs, this news comes as no surprise.

Living with the side effects of these drugs can be disabling. I can’t speak for anyone else and many of my friends tolerate these drugs, especially Tamoxifen (the most common first-line therapy) pretty well.

But I count myself among the 25 percent.

In the past 3 years, I gave each of these drugs a fair shake. For the first year, I dutifully swallowed Tamoxifen every day and took solace in the fact that it was “proven” to lower my odds of recurrence by 50 percent. But I stopped cold turkey when my breast cancer came back. No one told me that some women “fail” on Tamoxifen and that no one can tell if it’s really working until it’s too late. Dang. For a drug that’s been around since the 1970s, you’d think someone would work out that little kink.

After breast cancer #2, I diligently worked my way through all three second-tier drugs (the aromatase inhibitors Arimidex, Femara, and Aromasin) as well as Lupron, the hard-core ovarian-suppressant. I’m hesitant to list the number and severity of my side effects because I don’t want to discourage anyone. But suffice it to say I was unable to live in a way that made life worth living. And, yes, I do want to live very much…but at what cost?

The side effects that derailed the women in the Michigan study included hot flashes, vaginal dryness, and joint pain. Check. Check. And check. The authors noted that those women who had the most angst about recurrence were more the most compliant. “Greater fear [equalled] greater adherence,” says the medical oncologist who treats breast cancer patients at UM. The beauty of this quote is how conflicted she seems about the fact that the women who are scared shitless make the best patients. Of course, that sounds bad so she continues…”we don’t want our patients living under a cloud of fear, so we need to develop creative ways to both reassure and motivate them.”

Here’s the problem lady: women don’t need your creativity or your reassurance…we need better drugs and we need them NOW. Stat. We also need breast cancer specialists to pick up the clue phone and start shouldering some of the responsibility for their non-compliant patients.

For instance, when I called my breast cancer oncologist worried as hell that my joints were double their normal size and too painful to move, his nurse called me back and said “it couldn’t be the hormone therapy.” That “it sounds like arthritis. You should call a rheumatologist.” Really?

Stunned by the brush-off, (here’s where I should mention that my oncologist was the president of the f**ing American Society of Clinical Oncology), so I’m pretty sure I’m not the only woman who gets the cold shoulder, I used my fat, painful fingers to find a handful of peer-reviewed studies from top-tier medical journals describing the direct link between the drugs I was on and severe joint paint, primarily in premenopausal women (like me). I sent him links to the medical literature. And then I fired him.

I hired a new breast oncologist. She’s a Harvard-trained MD, PhD at a top Boston cancer center who specializes in treating younger women with breast cancer. She listened. She shared her thoughts. She treated me like a capable adult. Together we tried a few more drug combinations. And, after talking with her about my fears, my anxieties, and my side effects, she gave me her blessing to join the 25 percent club because, as she says, “I don’t want to save your life if it’s going to be a miserable one.”

And that’s what we should be talking about.