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

Another Word on Prayer

I love words. Words give me hope that I will understand and be understood. Ever since Roger Ebert put his face on the cover of Esquire I knew he was someone I wanted to understand. He is a writer too. I stop by his online journal when I’m in the neighborhood. On the surface, we have little in common, Roger and I, aside from cancer and a love of words.

This morning I was touched by his insight, confidence, and clarity. In an essay about Terrence Malick’s new film The Tree of Life he wrote:

Many films diminish us. They cheapen us, masturbate our senses, hammer us with shabby thrills, diminish the value of life. Some few films evoke the wonderment of life’s experience, and those I consider a form of prayer. Not prayer “to” anyone or anything, but prayer “about” everyone and everything. I believe prayer that makes requests is pointless. What will be, will be. But I value the kind of prayer when you stand at the edge of the sea, or beneath a tree, or smell a flower, or love someone, or do a good thing. Those prayers validate existence and snatch it away from meaningless routine.

We all occupy our own box of space and time. We have our memories and no one else’s.

I am certain of very little, but I do know that I am fully occupying my box of space and time. This awareness of self is a rich and wonderful thing. And, above all else, it is full of prayer. Thanks Roger. Be well.

Let’s get real

The poster on the left greeted me in the lobby of my yoga studio this week. It inspired me to make the poster on the right. Since I’m a reporter, I made a couple of calls. Deborah Lattimore, the mighty woman in the photo, was a joy and an inspiration. She gave me permission to use her photo. She took the photo of herself during treatment for breast cancer and uploaded to the interactive feature Picture Your Life After Cancer on the New York Times. She wanted to counter the popular narrative of mastectomy patients looking sad and victimized. Her photo will appear in an upcoming book jointly published by the New York Times and the American Cancer Society. My second call, to the event coordinator at the brewery, didn’t go as well.  She said she knows nothing about the poster or the event other than the fact that the brewery donated a keg. (PS. Alcohol increases a woman’s risk of breast cancer.)

Since this poster is woefully short on facts, I thought I’d list a few I gathered yesterday while reporting an upcoming (unrelated) article on breast cancer for a major women’s magazine.

1.5 million=women diagnosed with breast cancer worldwide this year

500,000=women will have recurrences (most will be counted as “cured” because the recurrence is more than 5 years after their initial diagnosis and research only tracks women for 5 years. Of these second-timers (myself included) 1 in 3  will die of the disease.

$3.3 billion=amount spent on mammograms in the US each year

$16.5 billion=annual cost of breast cancer treatment in the US

30=percentage of breast cancers overdiagnosed and overtreated

For every 2,000 women screened…

       1 life will be prolonged

       10 will be treated unnecessarily

$1 billion=annual amount invested in breast cancer research in the US

830=resolutions and bills with the words “breast cancer” introduced in the US Congress since 1991

91=number of breast cancer drugs under evaluatation by the FDA

0=number of women cured

More than 40 years and billions of dollars have not ended breast cancer. It has, however, created a robust cancer industry that thrives on raising awareness and producing drugs, screening devices, and genetic tests.

(Sources of all stats and end quote: National Breast Cancer Coalition)

It’s time to change the conversation.