How long have you been on Tamoxifen

[lollypoppy123]

I had a mx 9 years ago for early stage breast cancer at age 42.

I've taken Tamoxifen ever since with relatively few issues but really struggling with muscle pain at the moment an wondering if Tamoxifen is contributing to that. I'm terrified to ever stop as I would rather live with muscle pain than the alternative but something tells me that it's not a drug to use forever.

I'm discharged from oncology now so no oncologist to advise and GP thinks I should continue if I can.

I guess the sensible thing to do would be to take a break and see if my muscle pain improves but I'm just wondering how other people have fared with Tamoxifen long term.

I didn’t think there was any evidence for taking it longer than 10years.

Would it be the tamoxifen if you have been taking it before and it's not had this side effect?

I have been on Tamoxifen since August 2022. The lack of oestrogen can cause bone issues so I was told to take calcium and vitamin D, sometimes bone scans can be useful but have only been given two and signed off. Mine showed oestopenia. I get occasional bone ache but if I take a Wellwoman 50 vitamin I find it goes quickly.

When I wondered if Tamoxifen was an issue my oncologist recommended a break to see. Think it was a few weeks. It actually turned out no different on or off. Just seen it's muscle ache. Might be worth asking oncology anyway if can get through to them. There's also stats on Predict Breast about use of Tamoxifen and the new version shows lower success rates.

I was diagnosed at the same age and then was at 5 years last year so they did bloods to see if I was post menopausal which I was and have swopped to Anastrozole.

Have they done bloods on you? I think as well when I had my 5 year check up they did this sort of checklist that helped to determine the risk of coming off medication and a reoccurrence, mine was very low but, like you, I'd rather stay on the medication at the moment.

Can you contact the breast cancer nurses and see what they say or maybe contact one of the charities?

I've been on it nearly 5 years. Main side effects awful weariness, hot flushes and joint pain. Several other less debilitating but unpleasant effects.

Talk to your breast cancer nurse about coming off. I can't wait to stop.

18 months

I do find that regular exercise and resistance training really does help the joint issues. Plus more protein (I favour veg sources as seems to also help joints) Mine were worse before diagnosis and actually whilst I was on hrt.

Some weeks I have to mobilise a lot in the morning. I've upped my omega 3 and am wondering if that helps too

Look at Get me back on instagram

It was worse when i started

There are certainly weeks to where I have lots of muscle cramps and joint pains and I have to have Epsom salt baths and massage muscles a lot

I was taken off it after 10 years. I had no side effects really. My menopause occurred halfway through and since then I've been diagnosed with osteopeania. I was told that the effects of tamoxifen depend on whether you're pre or post menopausal.