What to expect coming off Tamoxifen

Hi, ì went on Tamoxifen following a lumpectomy and radiotherapy in 2018 at age 45.  I was told at the time I would be taken off 5 years later for 12 weeks to test my hormone levels then it would be decided what i should be on for the next five years.  Could anyone tell me how this happens?  Is it done with my gp or back with an oncologist?   Also what side effects should I prepare for?  Thanks for any advice x

  • Hello and thank you for your post,

    I think if you are still having follow up appointments with your breast cancer team that you ask them about testing your hormonal levels. If not then you might be able to talk with the breast care nurse about this, if you have her number leave a message. If you have to ask your GP about it then they may want to liaise with this team about this.

    If you need to carry on with hormonal treatment, this will depend on the risk of the cancer recurring. The type of hormonal treatment you need to have will depend on your menopausal status and whether you have had the menopause or not hence the hormonal test.  If you have had the menopause (which is possible at the age you are now) you will be prescribed a different type of hormonal treatment from a group of medicines called aromatase inhibitors. They work differently than the tamoxifen and research has shown that these do a better job at reducing the risk of recurrence in women who have had their menopause.  

    We have information about hormonal treatment, the different types and their side effects on our website here  

    I hope this helps.Please get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Take care,

    Caroline