I relate ! (Disclaimer - this is not a post designed to make women worry about tamoxifen, or to encourage people to not try it as many cope with it fine and have minimal side effects! I would never want anything I say here to be something that affects anybody taking a medication prescribed in their cancer treatment.) I was exceedingly unwell on Tamoxifen, I had every physical possible side effected listed and many more besides - I was like an old woman, I still have the list here in the back of my diary and it staggers me to read it now. I even had urinary incontinence, muscles that were spasming and raised BP - but as I say, the list was a long one ! The worst part was my mental state, I was desperately and concerningly depressed after a number of weeks. I would say, I had no quality of life to speak of. I had previously had a post-natal hormonal psychosis and therefore it wasn't out of the ball-park that I was going to be suspectible to problems with tamoxifen and infact any hormone changes. For a number of weeks a few letters went back and forth to the hospital from my GP and everyone pushed for me to continue with it, citing the high grade of cancer etc. After seeing my oncologist a few weeks later, she removed me from tamoxifen and said that if I was to re-take it it would be under the gaze of mental health services as it affected me so badly and I was simply desperate, it was as if I was having a full body oestrogen depletion. (I'm not under the care of mental health services by the way, and hadn't been since my post-natal experience) So, I would say, that there are some women - luckily the minority - who have a very very intolerably, infact unbearably, hard time on hormone related medication. Anything you take is your choice, and only you can weigh up and it seems you are being practical and know yourself and what is real and not real. I came up against a few medics who simply could not grasp how I was feeling and were about treating the body only and not the mind, until the final oncologist who understood my level of response to the drug. The guidance I had was that I had to weigh up the balance - and decide what is a better life for you. In one way for me it was easy, I was living no life on tamoxifen, but of course the fear of not taking it was also overwhelming and that is something I have had to live with since stopping it. I would have an open an honest conversation with your oncologist, and state your concerns and thoughts just as you have here. My experience was quite a few years ago now, and there may be different guidance, possibilites in treatments, things to alleviate symptoms - lots of things that might possibly be different. I know that some women decide to be treated with anti-depressants and still take tamoxifen, some try evening primrose and a few other herbal things which have been lost from my memory 😉 Talk through the stats, the possibilities, get their perspective on the risk - of course we don't know which women tamoxifen works for and which it doesn't so there are always grey areas in any conversation about it. Ask them - is there anything else I could try ? Sorry, no solutions from me here, but total empathy !
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