Tamoxifen and M.E.



I have been advised to take Tamoxifen, but also to research it first especially as I have M.E. and tend to experience more side effects than most to drugs - Tamoxifen being known for unpleasant side effects in many. 


I am 32 and three weeks ago had a mastectomy (with immediate reconstruction) to remove a four centimetre spattered area of grade one invasive cancer, which had developed from DCIS.  There was also a second region in the breast which looked potentially dodgy for the future, and papillomas.  My consultant says the Tamoxifen is just ‘belt and braces’ as they are confident they have removed all the cancer which was only a low grade and hadn’t spread to the lymph nodes.  I am being referred to genetics though, as there is a very high incidence of cancer of many types in my family, including my father’s sister and my Mum who both had ovarian cancer.  It’s possible therefore I have a genetic propensity to breast cancer and so my risk factor could be higher for it returning.


I only got married two months ago and so the idea of getting menopausal symptoms right now makes me feel a bit sad, coming off the contraceptive pill due to the cancer being oestrogen receptive has been not ideal for us already, but I am also aware that if the cancer came back having not taken Tamoxifen I’d feel really bad about that.  


I would be interested in hearing from anyone with a similar cancer to mine who has decided not to take the drug, and also the experiences of anyone who has M.E. and took Tamoxifen.  


Thank you for reading.

Hello EmeraldGreen, I have been on tamoxifen for a month and haven’t noticed any side effects yet. Although it is early days, this is a good sign so far if it means my body has adjusted to it. I’m 28 and again it was offered as a belt and braces approach for my Grade 2 ER positive diagnosis. I have also just started monthly zoladex injections to temporarily shut down my ovaries as well. Both I was told could give me menopausal side effects.

While the side effects of Tamoxifen are widely reported and were explained to me by my breast care nurses, I was told that it was best for me to not ‘look out’ for side effects but just see how I get along with it first. Not every woman suffers with side effects or they may only be temporary. Sometimes reading the comments of people’s experiences on here can be quite alarming but every one is different.

I haven’t got ME so can’t comment on that experience.

Good luck with whatever you decide to do though, and remember that if you do suffer your oncologist will try and put you on an alternative where possible. Afterall, quality of life is just as important :-).


Hi Fran85,

I’m not sure exactly how this works so giving it a go. I read one of your initial posts and seen that you have had a similar diagnosis and treatment plan to me. I know the post is a few years old now but would really like to know how you are getting on as I’m following a similar path as you.

I’m 28, was diagnosed with Stage 2 IDC 3mm and DCIS 20mm ER+, HER2+. I had a lumpectomy + SNB back in April (nodes negative and clear margins), radiotherapy July and have started tamoxifen + zoladex. I’m just coming to the end of my first month of zoladex.

I was tolerating the tamoxifen pretty well but have had night sweats/hot flushes with the zoladex and havung trouble getting to sleep.

Just wondered if you found that side effects (if you got any) eased over time?

I’m also struggling with not being able to just have children when I’d like to, that taking medication and waiting two years post surgery is determining this. I feel silly being annoyed as I’m so grateful to still be able to think about planning a family one day, but with all my friends having children I feel like I’m driving myself mad thinking about it.

Hope you are well and getting on good with everything! ?