Worries about stopping Tamoxifen after 6 years

I've been advised by both my oncologist and doctor that my risk of BC recurrence is low enough to stop taking Tamoxifen after almost 6 years. I'm now 55 but I was not menopausal when I began treatment and had a Mirena coil inserted at the same time to combat possible side effects of womb lining build-up after a couple of polyps were found and removed. This, of course, stopped my periods and it was only a blood test last summer that revealed that I am likely menopausal with an FSH level of 36.

I've had a very good time on Tamoxifen, have felt extremely well, and barely any symptoms apart from some initial pain in my tailbone, strangely. I've also had minimal menopause symptoms apart from periods of hot flushes but generally, they are manageable. A little anxiety too. All of my friends are having terrible times with their menopauses and I've wondered for a while whether the combo of Tamoxifen and the coil have somehow staved off full-blown symptoms that everyone else seems to be having around me.

So my anxiety is about what will happen to me when I stop taking Tamoxifen and have the Mirena removed, but I can't find any info from health professionals anywhere. All there is was a thread on one of the breast cancer forums where people are detailing horrific experiences of coming off treatment, awful meno-type responses, anxiety, pain, etc and I am now really scared about stopping. My doctor just poo-poos it and says nothing will happen, but why am I reading all this stuff then? Can anyone point me in the direction of information about why typically happens when stopping this hormone treatment and what I can expect, please? Part of me thinks I should just stay on it and keep the coil (tho in theory this won't be working well 6 years on), but my doctor and oncologist say come off. I just don't want to be plunged into awful menopause by doing so.

Thanks for reading!

  • Hello and thank you for posting. I can understand this is a difficult decision for you.

    Unfortunately, as with any medicine related questions it is always going to be difficult to predict how one person might be. Reactions to drugs, their side affects and then the ending of them can be so varied. With all medications it is about weighing up the benefits and risks of what is right for you, and you and your doctors are the only ones who are going to know this. 

    I wonder if it is the menopause symptoms that most concern you is there a menopause specialist consultant or clinic you could also get a referral too. Also if you still have contact details for the breast care nurse you could call her and talk through your concerns and find out her general experience.  

    Hearing from other women on the forums can be so supportive, but yes there can also be things that increase your anxiety. Do remember that hundreds of women start and finish hormonal treatment everyday who aren't posting on forums so it isn't necessarily an accurate picture of what everyone experiences. 

    It might be worth also speaking to Breast Cancer Now, the UK's breast cancer charity. This is their page on life after breast cancer treatment.

    Take care Loulou, and if you want to talk anything through maybe give us a call on Freephone 0808 800 4040, the lines are open 9am till 5pm, Monday to Friday.

    Sarah