Just Walk Away

Last Friday Salon posted a piece about  Susan G. Komen canceling seven of the 3-Day walks it had slated for 2014. Komen blamed “economic uncertainty and competition from other charities” but neither Salon’s writer nor its readers are so easily duped.

After all, Komen’s news of declining participation comes after years of missteps, including partnering with Kentucky Fried Chicken to sell pink buckets “for the cure” and attempting to cut off funding for breast cancer screenings and services provided by Planned Parenthood.

Finally, women are saying enough is enough.

What took everybody so long to see through Komen?

Oh yeah, women’s magazines chose to shield ad revenues rather than reveal troublesome problems with breast cancer walks. Let me explain my frustration. In 2003, I pitched an investigative feature about the financial fiasco behind Avon’s breast cancer walks to Health Magazine. The editors loved the idea and assigned me  a 2,200-word feature. I was ecstatic. It was my first in-depth feature for a national magazine. It was a topic I cared deeply about. It was my dream assignment.

I spent weeks reporting the story. I interviewed all the top muckety mucks. I collected reams of data. I made Mary read and reread the piece for coherence and flow. When my deadline came I hit the send button with a feeling of pride. A feeling that this article was going to make a difference. That I had written something smart, something interesting, something that women would want to read.

I got no response from my editor. Zero. Zip. Nada. A month went by. Still nothing. A sense of dread took root in my stomach. I somehow managed to send professional-sounding emails that relayed my concern but not my panic.

Six weeks later my editor called to tell me Health signed on to sponsor an Avon breast cancer walk in Birmingham, Alabama. The magazine killed the story. My stomach dropped.  I tried to place the story elsewhere to no avail.

Fast forward to last weekend. I read Salon’s coverage about the decline in popularity of breast cancer walks. I flashed to my long-forgotten story. Thanks to the beauty of Macs, a quick search brought up the story. I reread it, dusted it off, and pasted it below. Because it never benefited from an editor’s red pen, it’s a bit rough around the edges. But I’m still proud of it. And I’m still out here trying to shed a light on the stuff no one likes to publish.

Breast Cancer Walks Equal Big Business

Kate Kelly is not an angry person.

Friends describe the 46-year-old as light-hearted, loving and generous, someone who prides herself on giving to charities in her hometown of Republic, Missouri.

But mention the words charity and event in the same sentence and Kelly’s bright-green eyes narrow with suspicion. “I was naïve,” she says in reference to her first (and last), multi-day charity walk. “From now on I’ll look at those events with a jaundiced eye.”

Kelly’s saga began in January 2001 when a bulging envelope from a college friend in Colorado landed in her mailbox. Folded up inside was a full-page ad from The Denver Post announcing an upcoming Avon Breast Cancer 3-day walk. On top was a handwritten note. Her friend, always the social planner, was gathering a group to take part in the event, and wanting Kelly to sign on.

The Choice No One Talks About: Part 1

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.

Epic Fail: Why 25 percent of us ditch the drugs

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.

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.

 

Radiation=No bueno for breasts

Worried about getting breast cancer from your shower curtain? Don’t be. Instead, worry about getting it from your doctor’s willy-nilly use of radiation.

This month’s Archives of Internal Medicine includes a special report penned by the smart folks at the Institute of Medicine (IOM) and paid for by the deep, politically dubious pockets of Susan G. Komen for the Cure. In a nutshell, the experts said, stop sweating bullets over the noxious chemicals in everyday stuff (ie: bisphenol A in plastics and phthalates in perfumes). Instead, start sweating doctors writing scripts for radiation-based diagnostic tests like it’s a goddamn ticker-tape parade and cancer is the grand marshall.

The IMO starts by stating the obvious. Radiation causes cancer. Um…yeah. Tell it to Madame Curie. And then comes the forehead-smacking stuff. The IMO estimates that “2,800 future breast cancers would result from 1 year of medical radiation exposure among the entire US female population, with two-thirds of those cases resulting from CT (computed tomographic) radiation exposures.” Ironically, many doctors order CT scans to look for cancer. So, in layman’s terms, our fear of having cancer is giving us cancer.

This damned-if-you-do-damned-if-you-don’t news is magnified by the fact that CT use has skyrocketed nearly 5-fold in the past 20 years. In 2012, an estimated 75 million people (half of them women) will have a CT scan.

What doctors don’t tell you (because some of them don’t know) is that in the terms of radiation exposure 1 CT scan equals 500 X-rays. Yes, you read that right. 1 CT scan = 500 X-rays. The real kicker? Up to 30% of those CT scans are unnecessary.

Per my earlier posts, I suspect that radiation exposure in my early teens contributed to the breast cancer diagnosis I received in my late 30s. Of course, no one knows. But this new report adds to a growing pile of evidence that overuse of radiation has serious consequences. (And don’t get me started on CT scans and kids.)

Recap: respect radiation as a diagnostic tool. A CT scan may very well save your life if you have internal injuries from a car accident or a burst appendix. But, if you’re not in immediate danger, ask your doctor about other options. He/she might have to rely on more old-fashioned diagnostic tools, such as skill, knowledge, and intuition, instead of just irradiating you.

Womanhood Reshaped

(This post has been in the works for a couple of years now. As I dust off my blog, I thought I’d go ahead and send it up.)

Up until they were amputated, I didn’t give my breasts much thought. Like any other body part, they’d been mine for as long as I could remember and, frankly, I found them rather anticlimactic. I dressed them, undressed them, and washed them in the shower.

No big wup.

Occassionally I’d wonder what it would be like to have the kind of breasts I see in the movies. I’d watch a starlet’s double DDs burst out the top of her gown, like my iris bulbs heaving themselves unceremoniously out of their beds each spring, and I’d wonder “wowza, what would it be like to have a pair of those pups?”

But mostly, my feelings toward them vacillated from indifference to annoyance. They annoyed me because I hated wearing a bra, especially in the summer. I wanted the freedom to walk my dog to the park wearing nothing up top but a cool, wispy T-shirt. But, too embarrassed by the bounce-factor, I’d pull on a bra, sure to be damp and sticky within 5 minutes and squeeze my chest like an anemic boa constrictor.

Given my ho-hum attitude toward my breasts, I was (and still am) shocked at the depth of sadness I feel by their passing. The double mastectomy wiped my chest clean. If it weren’t for two, neat scars, you’d never know they’d existed at all. I wonder if I’ll forget what they looked like, like the fading memory of a past lover.

Dana Jennings, my favorite NYT blogger, wrote here about how his erectile dysfunction (a side effect of prostate cancer treatment) made him reconsider what makes a man. The one sentence that resonated most deeply for me is: “I’m just trying to understand, trying to articulate, what it feels like to be damaged goods in our oversexualized culture.”

Some days I feel like damaged goods. Those days are often sparked by a look in the mirror. As both a yogi and a yoga teacher, I spend an inordinate amount of time in mirror-lined yoga studios, dressed in tiny tank-tops, surrounded by other women in tiny tank tops…most of whom are under 30 and all of whom have breasts. Now, I’ve always had a pretty healthy body image, but, on a daily basis, this scenario can kick my sense of womanhood in the teeth.

Of course, as Jennings points out, being a man or a woman is about much more than the fleshy bits. But, in a culture obsessed by the fleshy bits, being without them makes me feel “less than” in some intrinsic way. The deep sense of loss I felt after my surgery and continue to feel shocked the pants off me. At least once a day, I am caught off-guard by a stabbing sense of sadness.

I still avoid looking in the mirror when I step out of the shower. And trying on clothes in women’s dressing rooms is like entering the 6th circle of Hell, between the flourescent lights and the fact that the article of clothing I am about to slip over my head may fit nicely or it may droop listlessly, extra material bunched like two flat tires pinned to the front of my chest. I have fleeting moments of wondering what reconstruction would be like. Wondering if I would be happier. Wondering if it would be fun to have bigger breasts than I had before. But then I slip on a cool, crisp T-shirt leash the dog and walk out the door reveling in my new found freedom.

So, you’re better now, right?

Folks who get breast cancer, myself included, get this question ALL the time after “active treatment” ends. In the face of this question I stammer and say…”well, it’s complicated.” But thank goodness I have brilliant friends. This is–by far–the best answer I’ve ever seen to a question that is too nuanced and depressing for me to answer on most days. In one fell swoop, my friend summed up what I’ve been wanting to say for the past 2 years. Bless you R (and dear Ro). May she and I enjoy long-standing membership in the 60 percent club.

Truth, Certainty, and Dickinson

Since my diagnosis, I wrestle with a lot of things. Two biggies are truth and certainty. My cancer diagnosis (x2) and the medical mishaps that followed violently severed every strand of trust that tethered me to my body and to the medical profession (both conventional and otherwise).

I am only beginning to acknowledge the depth and meaning of that loss. To feel deeply unmoored; to physically recoil from scientific evidence presented as “truth” or “fact” is made more difficult by the fact that I am a medical journalist.

Specifically, for the past 15 years I’ve reported on women’s health. I’ve written hundreds of articles on topics such as how to protect yourself from cancer; how to live strong after cancer, how bright light might cause breast cancer, and (my personal favorite) top cancer-fighting supplements.

So here’s my question: How can I continue to write about health in a way that meets my needs and my editors’ needs? How can I embody the voice of authority my editors demand? Expect? How can I continue to participate in and profit from the propagation of a “journalistic certainty” that is deeply disturbing to me?

If anyone has any answers, please let me know.

Until then, I will share an Emily Dickinson poem; if, for no other reason, than to know where I put it. I know nothing about poetry, but last month, when I stepped through the doorway of Dickinson’s home, a perky volunteer handed me the poem below. The poem was in easy-read type on a pale green sheet of paper.  The leaflet has floated around my desk every since, daring me to lose it, taunting me with the suggestion that it might contain the answer to my questions. Maybe it does.

Tell all the truth but tell it slant -

Success in Circuit lies

Too bright for our infirm Delight

The Truth’s superb surprise

As Lightning to the Children eased

With explanation kind

The Truth must dazzle gradually

Or every man be blind -

Emily Dickinson, 1872