After ten years of tamoxifen

I was finally able to stop Tamoxifen last November after ten years. I was looking forward to moving on.  Fewer hot flashes, better sleep, less brain fog and perhaps a general.oncrease in my wellbeing, which to be honest, has been a decade long up-hill struggle. But I feel worse than ever. My joints are so painful, especially my knees. My feet are agony. My hands, feet and legs are swollen and I wake up aching every morning. I have tried to stay as fit as possible and have a good diet throughout my treatment, but this feels like another mountainside to climb. Does anyone share this experience or have any tips I can follow to improve things? Thank you. X

  • Hi Queens61,

    Welcome to Cancer Chat. I'm sorry to hear you're struggling with these issues since stopping tamoxifen. I'm not sure if you've yet discussed this with your doctor, but it would be good to do so to see if there's anything they can suggest, or info to give on how long to potentially expect issues.

    I wanted to send a reply to your post to give it a little boost, so a few more people should see it and hopefully you'll get some more replies. You can also search the forum (using the bar at the top of the page) for other similar discussions, if you would like to.

    You are also welcome to speak to our nurses, either by posting in the 'Ask the Nurses' section of this forum, or by calling freephone 0808 800 4040 - Monday-Friday, 9-5.

    Wishing you all the best,

    Ben
    Cancer Chat Moderator

  • Hello Queens61, I’ve just rejoined this site after an absence of a few years.  I’ve just started researching the after-effects of tamoxifen and saw your post.  

    I was put on it for 5 years after having a lumpectomy and radiotherapy in 2019 but I actually only did 4.5 years as it turned out I was one of the unlucky ones that tamoxifen increased my chances of endometrial cancer so in November 2023 I had a total hysterectomy to get shot of that. Sadly some of the cells escaped from the tumour in my uterus and set up residence elsewhere so I have completed chemo and radiotherapy at the end of May this year.

    Anyway … I stopped the tamoxifen in February this year, thinking that my side-effects (which were many and varied but gradually lessening the longer I was on it) would stop.  Instead I find that I’m even MORE full of aches and pains than I was on it. I spoke to my gynae consultant last week about the joint pains even though I knew it wasn’t his department but I thought he might be able to advise me what to do, ie see GP, maybe get bloods done, etc.

    He wants me to wait until after my next MRI and CT scans, not sure why, but I’ll be interested to discuss at next follow up appointment. 

    Anyway, not sure why I’m telling you all this, I’m just interested to read about others experiences.