Like many people paying on here, I too have recently been told I will need to take tamoxifen for 10 years. I have been on it almost 18 months and counting down till the day, after 5 years that I can stop it. I was diagnosed age 41 I had IDC, stage 2-3, positive nodes and very ER AND PR positive. When my onc recently told me about the latest research meaning I will need it for 10 yearsI just fell apart. I am suffering the common side effects of Horrendous hot flushes, low mood, lack of libido, have recently had gynae problems caused by ovarian cysts and a cystic thickened uterus which they said was caused by tamoxifen which gives me cramps and pain. I also have no energy. I thought I would be back to my former self by now. I used to have two jobs and busy weekends, and instead of gradually increasing my hours back to what I used to do I am actually considering reducing my already part time hours. I have never felt so low. I keep having crazy thoughts like this must be my payoff for surviving. Yes I am still here, and very grateful but now I am paying the price. I have been having counseling since last summer, thanks to a local charity it is free, but I still feel really low. I am seriously considering anti depressants but am scared if the side effects, and now I have been told I need tamoxifen for 10 years, wouldn’t I need the anti depressants for that time too? Can you safely take them for that long? Do you not get addicted to them if you take them over prolonged period. I know I should discuss this with the GP but I have been so many times over the last 2 years I feel so embarrassed to go again with more problems. Any advice or shared wisdom/experience would be gratefully received. Xx
Hi, I’m so sorry you’ve had a tough time. Like you, I’m on tamoxifen following Ductal invasive, tubular invasive and DCIS in my left breast. I’ve had WLE and mx and about to have further implant recon.
I’m very fortunate that tamoxifen is causing very little in terms of side effects. But I think despite tamoxifen, we have been through so much, that low mood is very common and not unusual. Anti depressants can help and can be taken for a long period of time. The modern ones are not necessarily addictive. Have you thought about trying mindfulness meditation ? I did a course at my local Maggies centre. It has been shown to help with stress and depression. It has helped me a lot. There’s a very good book by mark Williams called mindfulness, finding peace In frantic world. You may find it helpful. Have you spoken to your oncologist about your side effects ? And you should see your GP, it is their job to listen and help. There’s no need to feel embarrassed, I’m sure he or she will understand, I wish you well and be kind to yourself x
Thanks zuleika, I will look out for that book. I do have a mindfulness book but find it quite hard to read. Ur was written by the Buddhist monk who invented it but maybe your guy puts it in an easier to read format!
I did tell my onc about ask my side effects and whilst very sympathetic ask she did was emphasize the extent of my cancer ( larger size, multiple tumors, multiple nodes affected) and therefore the importance of tamox. She did suggest acupuncture but I am really needle phobic since all this treatment so that’s not going to happen! Xx