Coming off tamoxifen

Hi, there

I had surgery and radiotherapy for breast cancer in 2019 and have been on tamoxifen since then. I was told it would be for a period of five years and I’m now over this time.
I have terrible leg cramps, my joints are shot ( had to have hip replacement at 53 and other one going) and to top it all on recent eye test, I’ve got thinning behind the retina. 
Can I just stop taking the tamoxifen or should I see my GP or contact the breast cancer clinic.

I don’t want to waste anyone’s time if it’s just a case of, done the 5 years, now you can stop!

kind regards

  • Hello Stephi and thanks for your post,

    I am sorry to hear about the different symptoms that you have experienced.

    It would be a good idea to talk this through with your GP and get their opinion rather then stopping it straight away.

    Over the years that have been many different trials looking at how long women should be on tamoxifen.

    You can look at the results of the ATTOM trial. This compared women taking Tamoxifen for 5 years versus 10 years.

    As you are experiencing so many different side effects the GP may feel that you should stop but I would discuss this with them first.

    I hope this helps.

    Do give the nurses a ring on the helpline if you would like to talk it through. the number to ring is Freephone 0808 800 4040 and the lines are open Monday to Friday 9 am to 5 pm.

    All the best,

    Catherine

  • Hi Catherine,

    You’ve confirmed what I already knew, that really I need to speak to my GP. 
    I also had a look at the trial you mentioned so that was really helpful as well. There is a history of cancer in the family with both my sisters having treatment and grandmother. Lots to discuss.
    Thank you so much for taking the time to reply. 
    kind regards

    Steph