Finished Tamoxifen last week

I have been taking tamoxifen for five years. I had very few side effects at the beginning. Hot flushes, some discharge.

I was worried about weight gain so I started at Slimming World and this really helped and I got down to a really good BMI. That all changed a bit with lockdown and caring for my wife who died of bowel cancer three years ago.

But over the last year I have been having increasing problems with joint pain so my mobility was affected. I could hardly heave myself out of a chair sometimes - hips knees shoulders hands. I had lots of physio but I found it so hard to do the exercises and nothing was improving. I haven't had a recall from the hospital but decided to stop the tamoxifen as it was five years. I can hardly believe the difference it has made. I can get in and out of a chair, i can go up and down the stairs without too much of a problem. It is still sore and my knees are a bit dodgy but I do have arthritis and it has only been a week! I am sleeping much better. I do have a cataract now and I think this is clearly related to the tamoxifen. I think my skin isn't so dry. 

I'd be interested to hear from other people how things improved when they stopped taking tamoxifen and how long it took.

  • I stopped taking it a few months ago after taking it for 2 years, for  similar reasons.  The hot flushes stopped, my stress levels reduced, but the pain in my groins, lower back & legs persists. I am on a long wait to see the Spinal Team, something went wrong with the referral. Walking is becoming more difficult. Not sure if it’s all down to Tamoxifen and if so what long term damage has been done. Don’t know if it is spinal, could be fibroids. Also had partial amputation of big toe due to Melanoma a year ago, so that could the problem. But I”’ve spoken to others who have no long term effects so it’s difficult especially these days as access to GPs and other sources is ve ry, very difficult . All I can say is do check with a doctor if you can find one to have an in-depth discussion with. Good luck

  • I’m so sorry it sounds like you’ve had an awful time. 

  • Thank you, I guess I have terrible timing, breast cancer during lockdown (2021) then melanoma a year later and things still aren’t functioning properly now in 2023. I know in some ways I have been “lucky” in the sense that I did get diagnosed and operated on. It’s the after stuff which wasn’t always pleasant.