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.

 

Soy Reprieve?

December 10, 2009

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…

Pinked

October 13, 2009

Yesterday, I spoke with a reporter from the Detroit News. She is writing a story about breast cancer awareness month and was interested in talking to folks who are less than tickled pink by the proliferation of pink ribbons. (Who, moi?) I thought I’d blogged forward and backward about this topic, but I was caught a bit off guard by what seems to be the most obvious question of all.

“So, why is pink NOT your color?” she asked.

(Insert forehead-smacking moment here.)

How could I have not written at length about why (exactly) pink is not my color! Okay, loyal readers (all 3 of you) know that I am not a card-carrying member of the rah-rah, breast cancer sisterhood. Hence, maybe the name of my blog is self-explanatory. But I welcomed the chance to answer her question and thought I’d do so here as well. Because, believe it or not, until I was tarred and feathered in pink last February, I thought pink was a swell color.

Let me explain. In those awful two weeks after the “C-bomb” dropped, Mary and I schlepped around shopping for a breast cancer surgeon. My first inkling that  pink was no longer my innocent, cherry, childhood friend was when I entered the first breast surgeon’s waiting room. It was as if a flamingo had just vomited on the place. My eyes stung at the pink upholstery on the chairs, the pink wall-to-wall carpet, and the pink window treatments. The staffs’ outfits matched their surroundings, like lizards that evolve to look like rocks or leaves. Every nurse was peppered with pink-ribbons from her lapel pin to her pink shoelaces. And the pink suffocation didn’t end when you escaped the office, it followed you home, like a virus.

Every time I consulted a breast cancer surgeon, I left with a bag of pink SWAG. I felt as though I’d just attended the breast cancer Oscars–or a birthday party for 5-year-olds. I kid you not, I have a box of breast cancer tchotchies in my linen closet. (Seems like hubris to recycle that breast cancer business—never know when you’re going to need a brochure on metastasis.) Each goody bag revealed various assorted breast cancer bric-a-brac including a pink water bottle to quench my thirst after sitting in the waiting room for hours, pink binders to hold my important medical papers, a pink day planner to help me remember my radiation and chemotherapy appointments, a pink pen to write them down with, and a pink journal in which to record my pinkest of pink thoughts. (Just so you know…I am not making this up.)

Now, just for kicks, imagine a man newly diagnosed with prostate cancer. Picture his doctors and nurses showering him with baby-blue baubles. Maybe his gift bag includes a blue beer cozy, blue-ribbon-bedazzled sweat socks, and a blue notebook to keep track of his deep man-thoughts about how it feels to lose a part of his masculinity. Imagine the man slinging his blue tote over his shoulder on his way out the door. Let’s stop and ask ourselves: Is this supposed to make the man feel better? Does his possession of a blue-ribbon festooned notebook make him feel welcomed into the “sacred brotherhood” of prostate cancer patients? Did a chipper “survivor” pop into the examination room to hold his hand and shoot him knowing looks while the doctor outlined his surgical options? (Again, I’m not making this up.)

This scenario sounds insane when you put a man in the picture, but this is exactly what happened to me last February, and I’m guessing it happens to thousands of women every year. Granted, some breast cancer patients undoubtedly eat pink ribbons for breakfast, lunch, and dinner and that’s fine, but let’s make some room for those of us who aren’t hungry.

This pink-coating of breast cancer makes me want to scream until I’m pink in the face. What would I yell? Oh, here are a few jewels that come to mind: For starters, I’m an adult, not a fairy princess. I don’t want to join your pink sorority. I have a deadly disease, not a boo-boo you can cover up with a giant pink Band-aid. I don’t want a fucking pink day planner. What I need is a surgeon who will treat me like an intelligent person, a person who needs accurate, concise, no-bullshit information much more than she needs a linen closet overflowing with pink gewgaws.

And while I’m on my pink soapbox, I would add: Don’t use your pinkest, most upbeat voice to tell me that radiation will give me a “virtual breast lift” by tightening the skin around my breast or that reconstruction will give me the “breasts I’ve always wanted”—all expenses paid! And stop waving your pink wand, like I’m 8 instead of 38. Pink is cute. Pink is frilly. Pink is for little girls. But there is nothing cute or frilly about having your breasts carved off and your estrogen levels chemically decimated to the point that your libido is a distant memory and your genitals turn to sandpaper.

Do I want to shroud myself in black? No.

Am I a negative, angry person who wants to simmer about her disease, her brush with mortality, her troubles on Tamoxifen? No.

What I am is a smart, curious, thoughtful person who needs a little pink-free space to wrestle with her breast cancer demons. Because no amount of forced pink smiles, pink walks, and pink banners will undo what cancer has done to my body and my psyche. The hardest part is that I know there are other women out there who feel the same, but I can’t see them or hear them because we are all drowning in an ocean of pink.