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Education > Our Blog > Why So Many of Us Quit Taking Tamoxifen
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

10 Comments

June 1, 2022

ROXANNE JORDAN says:
My cancer was grade 2, and I had my left breast removed (tissue saving surgery). My lymph nodes were clear, but they still had me taking Tamoxifen because I was hormone receptor positive. I'm 78, have always been very active, but now I have increased joint and muscle pain. When I E-mailed my oncologist that I was discontinuing the meds, she said "Thank-you for the update. Hope you feel better soon and please let us know if anything changes." I'll see her late this month and will question her answer. In the meantime, I am searching just how long it takes Tamoxifen to leave the system. I want to return to running and weight lifting without all of this pain. Any advice would be appreciated.

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May 4, 2021

Deinya Mautz says:
My mother was a 34 year survivor, diagnosed in 1955. When the opportunity to participate in the initial tamoxifen study there was no question of what to do. My participation was completed without difficulty with the exception of increased hot flashes. While they may be uncomfortable at times, hot flashes are NOT a terminal disease! Having this approach and hoping that if my participation could help even one woman, continuation was not a question. Yes, several years later I, like my sister, was diagnosed with breast cancer. Given the family history the general consensus was that perhaps the tamoxifen delayed onset for 10 or more years. When later genetic testing showed positive for Bracha 2, I decided to have a complete hysterectomy as a preventative measure. Yes, I have had cataract surgery but given my age at the time, the occurrence was considered age-related and not attributed to either tamoxifen or the 4 doses of chemo following surgery. I would do it all over again.

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September 7, 2021

Clover says:
Thank you for sharing your experience. I had been only recently past menopause when diagnosed with early stage breast cancer, and prescribed Arimidex. It’s similar to Tamoxifen, but supposed to be for post menopause. I lasted less than 2 months on it. Couldn’t get out of bed, cried a lot, joints all hurt quite a bit (and I walk daily and do yoga, so couldn’t have that happening!) I’m glad that you found alternatives to that awful drug, and hope you are doing well!

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October 13, 2021

Sherry Hayes says:
I had DCIS 14 years ago and left breast I had 37 radiation treatment I decline to take tamoxifen at that time now I'm having a little blood come out of my right nipple when it is squeezed Mamo and Mr I was negative doctor wants me to go on tamoxifen for five years I really don't want to start this would like to know more about side effects I have had a complete hysterectomy when I was 23 I am now 65 thanks for any information

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April 26, 2022

Irmarie says:
The side effects are worth my health. I did it for my daughter. It’s not easy. Now I am at 20 days left of the 5 years in 20mg tamoxifen. Can’t wait to feel like myself again. With no night sweats until my real menopause comes along!

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October 27, 2021

Christine J Breen says:
I am 70....complete hysterectomy at 22...own my own life coach practice. Still work 3 days a week. Had estrogen driven breast cancer....not brcc type, not hereditary....(no cancer either side.) Had lumpectomy. My test result was a 2....on the test that had to stay below 26 to avoid chemo. All test results were great. Am on Tamoxifin now, 6 weeks.....Constant brain fog, I can't concentrate to work, write, all the things I enjoy. Bloated and abdominal pain all the time. All the side effects seem so risky. Longevity in my family is well into the 90s. I have a positive attitude, am a spiritual person, love art, writing, walking, .....just feel non plus about everything....thick headed and sit far more than I used to. Do we know accurate stats on reoccurrence of cancer without Tamoxifin? Thank you. This is not how I want to live my life out, but I do want to live my life out❤️. Christine

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April 13, 2022

Liz Adams says:
You raise an excellent point, Christine. I am 53 and live in New York. Not one of my Oncologists can give an answer regarding accurate stats on reoccurrence without Tamoxifen. I stopped taking a month ago and feel more like myself. Debilitating joint pain, mental confusion and general feeling of being unwell are all gone.

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March 8, 2022

Virginia Rolley says:
I had stage 2 breast cancer along with it it invaded my lymph nodes on my left side. I could not take the side affects of tamoxifen and stopped. How risky is this for reoccurrence? I’m very confused.

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April 11, 2022

HEATHER MIXON says:
Small lump found in mammogram. Never knew it was there. Size of a staple, also found a microscopic place in one lymph node. I've had both removed and 6 weeks of radiation. It's been a year now. I've been struggling with so many side effects with the tamoxifen. I'm 49 as of March 5th. The discomfort in my vaginal area I can't take. I've been a good sport about the hot flashes and night sweat, depression, lack sleep but this vaginal stuff is a whole new level. I've reached out to different doctors on my team and I honestly get no relief. I feel like I'm just not sick enough for anyone to really hear me. As of today I've not been on the tamoxifen 8 days.and I feel much better. This week will be my 5th time to stop. This time I stopped it on my own do to the vaginal discomfort. I just feel like I'm young to take it and feel so bad and I'm to take my chances. I do have a since of peace about it. Sending the power of understanding to your family members and doctors along with mine. God Bless

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April 13, 2022

Wish I had taken it says:
I decided to risk it and didn't take tamoxifen for years. I was unlucky and had a reoccurrence. It's scary. I'm on arimedix and Ibrance now.

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