I've been there. I did that.
And damn, I'm here to tell you about it.
But first, here's what was reported, from USA Today by Liz Szabo Half of breast cancer patients stop taking hormone drugs and from the American Society of Clinical Oncology Fewer than half of breast cancer survivors adhere.... from a study of 8800 women with early-stage breast cancer. Researchers found that only 49 percent of the women completed the recommended regimen for tamoxifen, aromatase inhibitors or both.
It boggles my mind. Less than 50 percent of women took a proven treatment that cuts the risk of recurrence in half.
The findings resulted from an analysis of automated pharmacy records of women with hormone sensitive breast cancer, Stages I - III. What's especially troubling is the group with the lowest adherence rate was in the group of women under 40.
We need to have some serious conversation here.
One of the physicians quoted in the article pinpointed to me the huge disconnect between pharma, epidemiology, oncologists and survivors.
"We were surprised to see that so many young women stopped treatment early..." said Dawn Hershman, MD, associate professor of medicine and epidemiology at Columbia University Medical Center, who led the study. "Perhaps we need to do a better job of making patients aware that to get the full benefit of treatment they need to take their medications on time and for the full duration."
Yes. That's a problem. Breast cancer treatment (and other cancers, of course, the breasts don't own everything) is like running consecutive marathons. In my case marathon one: FAC. Marathon two: a string of surgeries. Marathon three: Taxotere. Marathon four: radiation. Marathon five: tamoxifen. The first four marathons are time limited. You're going to recover from a surgery. The effects of chemo wane until you go in for the next dose. Then you repeat the cycles until all the doses have been received. Radiation is x-number of days.
But tamoxifen lasts for five years and its effects, especially on younger, premenopausal women can be and are often severe. For the clinician side effects are lists of words on paper. For survivors side effects mean that the thinking disarray, exploding hot flashes, joint pain and swelling make living and working very, very difficult.
I remember sitting in my office many days wondering if my mind would ever process information efficiently again or what life would be like without hot flashes that started somewhere near my belly button and burned all the way up through my abdomen and thorax before exiting my head until it felt like every artery was about to explode. Only a caricature image of my head with steam coming out my ears helped me cut through the discomfort.
So after three years, with the agreement of my oncologist, I stopped taking Tamoxifen. He told me that the first three years following diagnosis are critical. I made it through those three years. I had already started intense exercise to combat symptoms of menopause and I continue to this day. Some hot flashes still manage to squeak through. I'm still hot most of the time. But my thinking did not completely clear until I stopped Tamoxifen. I was so, so glad to have me back.
The point of intervention: let's find better ways to help young women cope other than lip service. Let's stop denying that Tamoxifen is such a difficult drug to take, and let's get some alternatives working. If lumpectomy and radiation are effective cures, and a woman's "recurrence rate" is say, 10%, can she take survivorship head on and manage that risk with lifestyle interventions and diet? Doesn't that "prescription" reduce recurrence rate as well? What if the woman is 39? And her neighbor 59?
I'm left with as many questions as ever: who is following the women who did not take tamoxifen? Will we ever know how they fared? Do we want to know? My cancer was such that I left no stone unturned. But this report tells us that the case is otherwise for many, many women.
How do you respond to a friend who skips this treatment?
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