My Divorce from Tamoxifen

My Divorce from Tamoxifen

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People do not realize that once you’ve beaten cancer, the journey isn’t over. For some breast cancer survivors, we have to continue taking meds to keep the cancer away, and these meds have lasting side effects.

I was prescribed tamoxifen three years ago, and the side effects were horrendous: bone pain, sore joints, irritability, mood swings, weight gain, insomnia … did I mention weight gain? Yes, it sucks! One more side effect that affects many: loss of libido. This is one is particularly harsh, especially if you trying to get back in the dating game.

I truly have a love/hate relationship with tamoxifen. Well, I finally divorced tamoxifen. The relationship ran its course. Even though I did cheat on it with another drug for three weeks in December 2015, of which I wasn’t proud — but I asked for forgiveness. I returned to tamoxifen, all was forgiven.

Now, the time I was on the other drug, called anastrozole, was the worst time in my life. Why? Well, I became very suicidal and thought of ways of killing myself every night for three weeks. But I knew it wasn’t me that was talking; it was the drug. It was really messing me up inside. I was at the lowest point in my life. And yes, I did have a gun in the house and thought about using it.

I knew something was wrong because I am not a depressed type of guy. I love life and wouldn’t do it, but that drug was evil. Finally, I heard a voice in my head tell me to stop taking it. I threw away the pills and made an appointment with my doctor, to tell him what had happened. He totally agreed with me.

Crawling back to tamoxifen

I crawled back to tamoxifen. I was OK being back on it, but still didn’t like it. But at least some side effects subsided. No more insomnia, no more bone pain or muscle pain. I still had the weight gain. But this time, something else was happening inside of me — I was angry and depressed at the same time. This was something new for me. I hated what I was becoming. I felt like the old me had died, and the new me was a jerk. I became arrogant and egotistical. Who was this guy? Not the Steve of old. I didn’t like myself any more.

Friends told tell me that I was being jerk, but they didn’t understand it was because of the meds, even when I tried explaining that to them. It just didn’t matter. My old self was dead and I was stuck with my new self that I, and my friends, didn’t like.

On Sept. 29, my 48th birthday, I divorced tamoxifen. No more. Since then, I have been feeling incredible. No more being angry and/or depressed. I feel like the old Steve is being resurrected. It will take time to get back to my old self. Now, I am taking a gamble and some people may even say that I am crazy, because I had two years left to go on the medication. Why take the chance? Because I know, in my heart, that the big guy upstairs is going to take care of me.

I will still keep seeing my doctors every six months. And since I am no longer on tamoxifen, I will be exercising three times per week with a personal trainer and using a nutritionist. That is deal I made with myself as a condition for divorcing tamoxifen.  I am not recommending this same course of action to those out there. This is for me and me alone.

However, I am not alone in people who have stopped taking tamoxifen. In fact, one study I saw shows that as many as one-quarter of all breast cancer patients stop taking it within the first year. This non-adherence increases over time. So, while tamoxifen may be a great med to reduce breast cancer recurrence, what good is it if patients cannot tolerate the side effects? Clearly, we need more research into better meds.

For more information on male breast cancer, please go to www.protectthepecs.org

Note: Breast Cancer News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Breast Cancer News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to breast cancer.

4 comments

  1. Nicely written and great for men (and women) to better understand the side effects and what happens “after a diagnosis”.
    Our battle(s) with breast cancer dosen’t end when treatment ends..
    Keep up the great work Steve! Love saving lives together #pinkandblue
    HIS Breast Cancer Awareness

  2. Peggy says:

    I almost quit Tamixifen after 3 years, too. Hated the weight gain side effect. But that was really my only side effect. After 5 years I quit Tamoxifen. And refused when my onc suggested that “studies show” blah blah blah. I just said no. And that was 7 years ago. Liv long and happy Steve!

    • Tim Bossie says:

      Hi Peggy! Thank you for the comment. We are happy to hear that you are doing well without the Tamoxifen. Some people, we have seen, do very well after being on the drug for 5 or more years and choose to not take it anymore.

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