Why I Didn't Take Tamoxifen

I thought I should address this important topic since many women have asked me this question.

Once I was finished with my year of treatments, my oncologist suggested I take Tamoxifen, an anti-estrogen medication or hormone blocking medication, for 10 years! Tamoxifen is used to treat primary breast cancer. It is usually given as an additional treatment following surgery, to reduce the risk of breast cancer returning or spreading somewhere else in the body. This is known as adjuvant (additional) therapy and it has been shown to have many wonderful benefits and helpful in reducing the risk of recurrence.

A study from 2014 found, that the hormonal therapy tamoxifen offered long-lasting breast cancer risk reduction for high-risk women who hadn’t been diagnosed with the disease. (Breastcancer.org)

  • tamoxifen reduced the risk of estrogen-receptor-positive breast cancer by 35%

  • studies have shown tamoxifen reduced the risk of invasive and noninvasive breast cancer by almost half. (WebMD)

As with many drugs, a FEW of the common side effects are:

  1. pain in the back, ribs, arms, or legs

  2. rapid weight gain

  3. tightness in the chest

  4. trouble breathing with exertion or at rest

  5. depression

  6. difficulty moving

  7. hair loss or thinning of hair

  8. mood swings

  9. joint pain

The list literally goes on and on!!! Let me highlight a few. RAPID WEIGHT GAIN, POSSIBLE DEPRESSION, DIFFICULTY BREATHING AND MOVING, JOINT PAIN!!! When my doctor mentioned to me about starting tamoxifen for 10 years, I still had one month of my infusions left of Herceptin. I started to cry and said, “I can not discuss this at this time.” I had things I needed to check off my list and I still wasn’t mentally prepared for another item! I had my mastectomy, reconstruction surgery, chemo, Herceptin, check, check, check and then thought I would be done. Emotionally and physically I could not handle another thing added to my list.

That is the first reason I did not take Tamoxifen. I was not mentally prepared. I just couldn’t take the risk of anything causing more depression. My second reason was because the other side effects also scared me. I spoke to many women who had gained at least 15 lbs and were feeling achy and tired everyday. Every one of them told me to not take it. Third, I found out it was on the American Cancer Society’s carcinogen list, (to be fair so are tobacco and processed meats etc.). But honestly, I avoid those things as well.

Lastly, I recently found out the scientists in the 1960’s synthisised the drug hoping it would block estrogen and act as an effective contraceptive. However, during testing, they found that tamoxifen stimulated, rather than suppressed, ovulation in women. This was originally seen as a failure and the development of tamoxifen was almost abandoned.  However, the team leader, Arthur Walpole, refused to stop there. He threatened his resignation if the project ceased. They decided to develop tamoxifen as a treatment for breast cancer, which has led to it now being the world’s best-selling hormone therapy for breast cancer. (The article can be found here 2.)

I’m sorry, call me crazy, but that all sounds fishy to me!!! I would never tell someone to not take tamoxifen. It’s a personal decision and it was mine to not take it. It’s your body and you have to do what feels best. I chose to take extra precaution by working out everyday which also reduces recurrence rates by 40-50%. (Article can be found here https://blog.dana-farber.org/insight/2018/02/can-exercise-reduce-risk-cancer-recurrence/)

I hope this helps explain a little more about why I chose to not take Tamoxifen and that the decision is YOURS!