Tamoxifen and pain

Hi everyone, this is my first time posting to a forum so I hope I get it right.  I stumbled across this forum tonight and I can’t tell you how grateful I am to read about others who are on Tamoxifen and are experiencing the same things I am going through.  I don’t wish these side effects on anyone but I am glad that I am not crazy and that these are very real issues that doctors need to address.  The things I have read here tonight are the exact things I am going through and doctors don’t always seem to realize what their patients are dealing with and they sometimes brush us off.  My oncologist does not want to admit that Tamoxifen is causing all of my pain.  I have been on Tamoxifen since 2011 and I have pain everyday. Some days I think I just can’t live like this anymore.  I have pain in my feet and legs, fingers, toes and arms. Some days are better than others but some days I feel very tired and depressed.  I have talked with my family doctor about this and he does agree with me that the Tamoxifen is the reason for all of this pain.  He did test me for arthritis but that was negative.  I have had a bone scan to check for bone cancer and that was negative. I really don’t understand why my oncologist doesn’t want to say that these could be side effects unless he is concerned that I will stop taking the medication, which I feel as though I really don’t have a choice since my breast cancer was aggressive and invasive.  My family does not want me to stop taking the tamoxifen but they don’t really understand how I feel.  I also suffer from horrible hot flashes and the summers here in the south don’t help with trying to stay cool.  I must sound like I am complaining a lot but I feel like I have found mutual friends here tonight that will understand what I am going through.  I am very grateful that I have been cancer free since September 2010 (when I had my surgery) and have been very blessed in so many ways.  I try to help anyone I can that is going through cancer by talking with them and listening to them and giving them encouragement. I am a christian and I give God the glory for being healthy.  Thanks for sharing and also I would like to know if anyone has any info on essential oils and how they could benefit those of us on Tamoxifen.  I have just started investigating oils and I am interested in anything that might help with the aches and pains.  I don’t really take anything for the pain because OTC pain relievers don’t work and my family doctor does not prescribe pain meds. and I don’t want to take them anyway, so what’s a girl to do. Hope to get some feedback from you guys and I pray that we can overcome cancer and Tamoxifen.  Thanks again.

Hi Milliekate

Don’t worry you’re entitled to complain. Fate has dealt us a rubbish hand. I totally empathise re the tamoxifen. It’s sheer hell for some of us. I took it for 3 weeks and decided I wasn’t doing it any more. Have you asked for the difference in the risk between taking it and not taking it. I also had aggressive invasive but when I asked I was told the difference was about 9% and that didn’t take into account Herceptin which I’m also having. You have to weigh it up and decide if the misery is worth it. I think quality of life is more important and my GP agreed with me. I still have the hot flushes in the evening which started during chemo but they are nothing compared to the volcanic eruptions tamoxifen brought on. I’m not sure if that will help you and I know there will be others who completely disagree with me but that’s the choice I’ve made and I won’t be going back on it.
All the best x

Hi Milliekate and welcome to the BCC forums, I am sorry to read that you are having such a difficult time

In addition to the support you have here our helpliners are on hand with further practical and emotional support for you on 0808 800 6000 so do feel free to call to talk your concerns over with one of our team

Lines are open 9-5 weekdays and 10-2 Saturdays

Take care
Lucy BCC

Hi all,
I was told accunpunture is great for menopausal symptoms caused by Tamoxifen or other hormone therapy. But make sure you find a suitably qualified practitioner xxxx

I have tried Letrozole and tamoxifen and both have caused me terrible joint pain, to the point I could not get out of bed! The oncologist was very sympathetic, now I am trying Aromasin, still getting some aches but can get out of bed! I find gentle exercise and double the dose of glucosamine has helped. Now they are referring me to rheumatology as they wonder whether I have an inflammatory arthritis. Best of luck x