Life in general

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.

 

What The Cluck?

Holy crap. I thought pink washing had hit rock bottom, but cause marketers have one-upped themselves with a new pinkwashing campaign linking Kentucky Fried Chicken to the Susan G. Komen Foundation.

KFC’s campaign, called Buckets for the Cure, donates 50 cents to the Komen Foundation for every pink bucket “purchased by restaurant operators” between April 5th and May 30th, 2010. In an effort to raise $8 million in six weeks, according to Komen’s web site, “The lids of these special pink buckets will have a call to action to get involved. Names of breast cancer survivors and those who have lost their battle with breast cancer will be listed on the sides of the bucket.”

The same bucket that packs up to 2,400 calories and 160 grams of fat. Hello? Does anyone at Komen care that obesity causes breast cancer? Or are they too busy selling us out to the lowest bidder? Seriously. You can’t make this stuff up. The web site comes complete with a rotating pink bucket of fried chicken plastered with thumbnail-sized pictures of breast cancer survivors. Click on the picture to find out more about these poor saps being manipulated by the marketing geniuses at KFC.

I borrowed my blog headline from the clever folks at Breast Cancer Action who’ve skewered breast cancer marketers for years with their “think before you pink” campaign. The non-profit’s web site notes that Buckets for the Cure is “especially egregious because KFC, like most fast food chains, is overwhelmingly present in communities that have poor health outcomes.”  Click here to visit Breast Cancer Action’s web site and send KFC and Susan G. Komen an email telling them where they can stuff their bucket.

Something About Mary

I know it’s cliché to wax poetic about one’s lover on Valentine’s day but I don’t care. I’m seizing the day—every last gooey, sugary, chocolate-covered drop of it—to blog about Mary.

Like good lesbians, we met in San Francisco’s Mission district. She was gathering herself for the leap to grad school in San Diego. I was working at Sunset Magazine. Strangers, we arrived simultaneously on the doorstep of a friend’s party and chatted as we waited to be buzzed inside. She didn’t know it, but I’d trailed her down Valencia Street. Her red raincoat bobbing and weaving in front of me. She exuded a sense of upbeat urgency and I caught myself wondering who she was…wondering if we were going to the same place…wondering how she walked so fast! When I finally caught up to her, in front of our shared destination on Bartlett Street, I was smitten. She didn’t know me yet she held my gaze with a warmth, openness, and authenticity I’d rarely seen. This woman had her shit together. She had nothing to hide. I was in awe. Soon, I would be in love.

That was more than eleven years ago, and, whoa Nelly, it’s been a wild ride. Like most couples, we are the yen to each other’s yang. We love each other like crazy, drive each other nuts, and spend more than our fair share of time in therapy figuring out how to ride in tandem—each motoring toward individual and shared goals with no one getting run over in the process. We’ve chipped away at some big life lessons, but my cancer diagnosis felt like skipping from 8th grade to college in “relationship school.” Every day, or so it seemed, we blew through another grade. As our intimacy deepened, layers of fears and insecurities sloughed away.

The first welcome casualty was my decade-old fear of finishing second place behind Mary’s job in the race for her affection. The minute the shit hit the fan, Mary dropped everything. And I’m not talking about the average person’s “everything.” Last winter, Mary was on the brink of tenure—a six-year-long slog toward the finish line in a cut-throat academic job that left little room for error. (And by “error” I mean taking time off to care for your partner.) Academia is a relationship killer and we were limping toward the finish line, bandaged and bruised but still together, when the C-bomb dropped. Without a moment’s hesitation, Mary put her work aside to go with me to every appointment, research treatment options, contact surgeons, answer the phone, walk the dog, run out to fill prescriptions, change my bandages, and empty my drains. And she wasn’t just a nursemaid, this woman was by my side mind, body, and spirit.

My anxiety was show stopping. Every morning, I’d wake up before dawn to ruminate about my impending death. Without fail, Mary would wake up, gather me in her arms and talk me off the ledge. She’d help me round-up my shiny new collection of cancer fears, pack them up in a box, tape down the lid, and stow them on the top shelf of my mental closet. Day after day, morning after morning, she led me out of my dark place with patience and compassion.

When I hit rock bottom, I packed up my emotional bags and checked out of my body. That escape route that was only made possible because I had Mary to lean on. And lean I did. That weekend she drove me to Louisville to see my family, sat through a 2-hour visit with an alternative practitioner without batting an eye at his bizarre treatment approach or his stratospheric rates, stood in a line (20-women-deep) for a dressing room so I could try on a pair of jeans to fit my new cancer-fit figure, and, on our way out-of-town, drove 20 minutes in the opposite direction to buy me formaldehyde-free nail polish.

Maybe, most amazingly, is that through it all, she never let me see her sweat, never let me feel like a burden, never made me feel like my mood swing, fears, and mental check-outs were anything other than 100 percent normal and acceptable. She never added her own fears to my own raucous pile. Instead, she skillfully caught each one by the tail and caged it until she could release it safely in the company of a close friend or family member.

After more than ten years of loving this woman, I am still in awe. And I am more in love than ever.

Homebody

Standing on the cusp of my first cancer-versary, I’m surprised (but not) to note how much I’ve changed during the past 12 months. The most obvious and painful souvenirs of my trip to cancerland are also the most permanent—the two neat scars, like dash marks, running across my chest. The psychological shifts are harder to see.

Some days I feel like a completely different person, as if my body was hollowed out and re-stuffed. Other days I feel as though I’ve simply settled more deeply into myself, as if my psyche moved from the second floor to the basement apartment.

As cliche as it sounds, I’m less likely to sweat the small stuff (a parking ticket, a hole in my sweater, cat litter on the furniture–eww) and more likely to do annoyingly upbeat things (like hum in the shower). One of the most notable shifts is both physical and mental: a profound need to stay put.

I’ve always been a homebody. I like routine. I relish the simple stuff  like cooking, walking the dog, and practicing yoga. At night I love cuddling on the couch with Mary to watch a movie or laugh at bad reality shows. I love sleeping in my own bed. Since I need a lot of alone time and dislike crowds, confined spaces, and flying, travel has always presented a challenge. But I bite the bullet because I know I’ll be happy once I’m there.

So, last summer, after I’d physically healed, I thought I was ready to hit the road. Nothing crazy, just a few trips to visit friends and family. Oy, big mistake. Somewhere along the way, my travel angst blossomed into a full-blown aversion. Departing for each trip felt like walking off the gangplank into a churning sea of chaos and confusion. Mary deserves a medal of honor for traveling with me because I was a mess. In DC, I burst into tears when we got lost leaving the rental car facility. In San Francisco, my favorite city in the world, I felt physically pummeled by the city’s vibrancy and spent most of the trip in our hotel room, dodging maid service and crying. Fun times.

Unbeknownst to me at the time, I was mired in a bog of depression and traveling exacerbated my sense of helplessness. (I’m doing much better now, thanks.) Finally, at the end of my last trip, I had a complete and utter meltdown and realized that what I really needed was to stay home, so that’s what I’ve done. For the past four months I’ve stayed home and the world feels right again.

Shortly after my epiphany, Dana Jennings, a writer for The New York Times who blogs about his experience with prostate cancer, posted an entry about his sudden desire to stay home. He writes, “More than ever these days, I want to shrink the world to the couple of rooms in my house where I’m most comfortable…I’m still reinterpreting myself in the face of cancer, and that takes time and quiet.”

I couldn’t have said it better myself.

Soy Reprieve?

In the wake of my breast cancer diagnosis, I took a long, hard look at my diet. I stared down the contents of my refrigerator the way a crime victim glares at a line-up of possible perps. I wanted justice. I wanted revenge. I wanted to guarantee this wouldn’t happen to me again. (All the time knowing there are no guarantees.) Still, out went cheese, yogurt, and wheat (mostly). In came raw nuts, rice milk, and a staggering amount of fruits and vegetables. But one of the hardest transitions was saying goodbye to soy. I hung on with desperation, like a child hanging on to the last threads of her favorite blankie.

Eating soy meant I could still order a latte at Starbucks and—somehow—feel like I still had a toehold in the land of “foods normal people eat.” Saying yes to soy meant I could still indulge in things like eggless-egg salad and stir-fried tofu. But, after looking at the scientific research, I wasn’t convinced the natural phytoestrogens in soy wouldn’t ratchet up my body’s estrogen load. And, since I was going to the trouble of taking Tamoxifen to block the estrogen in my body, why possibly add to it?

My oncologist was no help, but, at least, he was honest. “We really don’t know if soy is helpful or harmful for breast cancer patients,” he said. Then he followed up with the mantra “in moderation it’s probably fine.” But “probably” was a far cry from the certainty I craved and when another health care professional questioned my continued intake of soy (saying something along the lines of “why play with fire?”) I decided he had a point. Maybe it was fine but what if it wasn’t? So, I said sayonara to soy foods.

But today I saw some news that made my shriveled taste buds perk up in hopes they may once again know the joys of soy. A study published in this week’s issue of the Journal of the American Medical Association found a higher intake of soy foods was associated with a lower risk of death and breast cancer recurrence among breast cancer patients in China. Researchers enrolled more than 5,000 breast cancer survivors (a nice big number) and followed them for nearly four years (not a decade or more, which would have been nice, but a solid length of time). Interviewers asked them detailed questions about their diet and closely tracked the amount of tofu, soy milk, and other soy foods the women ate. In the end, they found that soy intake was inversely associated with mortality and recurrences in the group. Meaning, the more soy the women ate (up to 11 grams a day), the lower their odds of dying or having a breast cancer relapse.

So, what about those plant estrogens? The scientists are placing their bets on the anti-estrogenic theory of soy. In other words, that plant estrogens directly compete with the body’s own estrogens for cellular parking spaces. When a plant estrogen glides into a parking space, other estrogens are forced to keep circling. Eventually, the game of musical chairs ends and the estrogen (now dizzy from driving in circles) is booted from the body. As far as we know, beyond being parking-space hogs, plant estrogens don’t continue to impersonate “real” estrogen and, therefore, they subtract rather than add to the body’s estrogen load. At least, that’s the theory this group is espousing. While this notion isn’t new to me, it’s nice to see some new scientific oomph behind it.

Of course I would be remiss in my duties as a medical writer if I ever suggested one should make a dietary change based on a single study. And, no, you won’t find me bingeing on tofu and washing it down with great gulps of soy milk. But I may just indulge in the occasional soy latte. (After all, who can afford them more than occasionally?) So, thank you to scientists who keep exploring the hinderlands of breast cancer research, and Starbucks here I come…