Tamoxifen- creaking, aching bones

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Hi I’ve been on Tamoxifen and few weeks. I can already feel a couple of different joints aching and clicking since taking it. This is just the start. Once full ovarian suppression comes into play, I’m concerned that the onset of Osteoporosis may be triggered. My mother had it. Does the body adjust and the pains diminish? How long does it take before you get a true reflection of how the drug will affect your body?

I would prefer not to take it but worry about the increased chance of the cancer recurring. I’ve read some statistics that say it gives you a 6% better chance of the cancer being kept at bay, but other sources say it can be up to 50% what’s the true percentage please?

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I would really encourage you to request a DEXA scan if OP runs in the family. It did in mine & when my sister was diagnosed with osteopenia l arranged a scan. I found out that treatment had really adversely affected my bones & l now have quite advanced OP. Once you know you can do a lot of things to improve the situation eg diet, resistance training, strontium. I have chosen not to take medication because of the potential side effects, but obviously that is an option open to you too. Just to say, Tamoxifen is helpful to the situation rather than harmful, according to my onc, but don’t let them transfer you onto Letrazole/other AIs which can make the situation much worse. Good luck x

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Hi. I can’t say what the actual percentage difference is with tamoxifen although I think that it probably depends on the individual. A couple of things spring into my head though. Firstly, apparently tamoxifen is less harmful bonewise than some of the other hormone treatments- definitely a good idea to do the bone scan though and the diet/resistance training will def help. Secondly, I read an article recently that tamoxifen alone had cut deaths from breast cancer by a third since the 1970s so it is an important factor. Finally, a friend’s Gran got BC at 86 and was only offered hormone therapy due to her age and health - not tamox but similar principle- that was 5 years ago and the tumour has shrunk and she is fit and well for a 91 year old! X

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Hello, can you tell us what/ where the article was about Tamoxifen cutting deaths by a third?
Thanks

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Hi, I just saw the oncologist after a bone scan that showed osteopenia. I am on Letrozole which is definitely bad for bones. He suggested I switch to Tamoxifen after a few years to protect my bones. He said there are (as always) other nasty potential side effects from Tamoxifen but bone issues is not one of them.

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https://www.england.nhs.uk/blog/game-changers-in-breast-cancer-treatment/

I think similar stats were talked about in a BBC article earlier this year…but they talked about it working even better when combined with another drug I think.

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Oh thank you. That’s a really encouraging article!

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Hi
I am 3 years post DIEP. Had awful pain everywhere joints and general body. Felt totally miserable. Had tried 2 AI . Now on 3rd AI and feeling the best I have felt since op. I would suggest NOT putting up with side effects… speak to your specialist team. Now that I am pain free I can do all the exercises I had stopped due to pain. I felt cross with myself that I didn’t seek help earlier …. Persevere. Good luck

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I really agree with bibi. I had lumpectomy 2 years ago. All was ok until i went on lestrozol and then anastrozole. Horrendous pain in my joints,i didnt want to live like that. So asked if i could try tamoxifen. So i have swopped to that. Now i know this is a personal thing but i read up on studys rhat had been done in italy and America, and the result of their study found just 5mg of tamoxifen was just as effective as 20mg a day. I am an older person so probably different if your younger. So far my joints have been so much better and even fot some libido back. Good luck whatever tou decide. Lots of love x

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Hi Geo23

Thanks for your post.

It’s understandable too be concerned about how long the side effects from tamoxifen are likely to last.

We often hear from women who report symptoms, such as joint and muscle pain when taking hormone therapy. For many people these side effects usually reduce after three to four months, but for some, they can continue.

You say you are concerned about osteoporosis, if you are post-menopausal there is evidence to suggest that tamoxifen slows down bone loss reducing the risk of osteoporosis. However, in premenopausal women the risk of osteoporosis may slightly increase. It’s important you discuss your worries with your treatment team and, as Bibi44 says, you may be able to request a bone density (DEXA) scan to check your bone strength, given that your mum had osteoporosis.

You may find our information on bone health helpful to read

As blue80 says the benefit from tamoxifen is individual, your treatment team will be best placed to advise you on your individual benefit from tamoxifen, as it depends on a number of factors including the grade, size and stage of your cancer. Some treatment teams use online programs such as Predict to estimate how treatments such as tamoxifen might improve survival. You could ask your treatment team about this.

As Scotdoll suggests if your symptoms continue it’s important to let our breast care nurse or treatment team know as they will be able to offer further support.

Adapting to life after treatment can be difficult and often the need for information and support continues. You may be interested in our resources that are particularly for those who have come to the end of their main hospital treatment. These are known as our Moving Forward services and include our Moving Forward booklet and Moving Forward courses.

Do call our helpline if you would like to talk this through or have any further questions. The helpline team have time to listen to your concerns, talk things through and signpost you to more support and information. Your call will be confidential, and the number is free from UK landlines and all mobile networks. The number is 0808 800 6000, (Relay UK -prefix 18001).

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Best wishes

Addie

Breast Care Nurse

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