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Why So Many of Us Quit Taking Tamoxifen

April 05, 2021

Why So Many of Us Quit Taking Tamoxifen

by Kim Horner

Soon after I tested positive for a BRCA2 mutation in 2009, my doctor urged me to take tamoxifen to reduce my breast cancer risk. Tamoxifen blocks the effect of estrogen on breast tissue. For previvors, it reduces breast cancer risk by up to 40 percent when taken for five years; the protective effect continues beyond that period. Doctors also prescribe tamoxifen to treat hormone receptor-positive breast cancers.

I was 41 at the time. My son was still a baby. I was terrified of developing cancer but also scared of taking a medication that can cause hot flashes, night sweats, vaginal discomfort and increases the risk of uterine cancer, blood clots and stroke.

Based on my doctor’s advice, I filled my prescription and started taking tamoxifen in July 2009. The hot flashes began after just two days. I started to have difficulty concentrating and I couldn’t focus at work. A couple of weeks later, I experienced ongoing pain in my pelvic area. After trying tamoxifen for about a month, I quit–I had to be able to get through the day.

Because of these side effects, many patients do not begin or complete treatment with tamoxifen. That’s why I was glad to see FORCE’s eXamining the Relevance of Articles for You (XRAY) article about research that studied why patients stop taking these medications and what can be done to address the issue.

According to the XRAY article, the study was the largest survey of hormone therapy use among online patient populations. More than 2,500 participants completed a survey about why they did not begin treatment or why they stopped it. If they began treatment, the survey asked respondents about their side effects and how they managed them.

Based on the survey results, tamoxifen causes difficult quality-of-life issues for most patients. It’s concerning that only 40 percent of respondents reported finding relief for those symptoms. I can relate to the comments that doctors did not take their patients’ side effects seriously. I felt that my doctors presented side effects as something you simply have to live with. However, waking up in a pool of sweat, having frequent hot flashes and not being able to concentrate at your job is not sustainable.

It was encouraging that the study found that a healthy diet, exercise, physical therapy, yoga, vitamins and even medical marijuana helped some patients. I hope the findings lead to more research to find ways to help patients manage the side effects of hormone therapy so that more women can benefit from these important medications.

After I quit taking tamoxifen, I decided to have my ovaries, fallopian tubes, and uterus removed. After my surgeries, I tried going without hormones. That lasted a week. My doctors approved a very low dose of estrogen for a few years to help me transition into menopause. I have not taken hormones for several years and am doing well.

Kim Horner is a FORCE Texas Impact Leader in Dallas-Fort Worth. She is the author of Probably Someday Cancer: Genetic Risk and Preventative Mastectomy (University of North Texas Press, 2019). The book includes a foreword by Sue Friedman, executive director and founder of FORCE.

Posted in: XRAY, Quality Of Life
Tags: Breast Cancer, Cancer Prevention, BRCA2, Prophylactic Surgery

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