Alternatives to tamoxifen

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Hi all

I’ve been on tamoxifen for just over 2 years now. On another thread I mentioned how badly it is affecting me - mostly with fatigue but also with aches, hair loss and some menopausal like side effects - although bizarrely sweats and flushes aren’t bad. I don’t know how many of these side effects are due to tamoxifen. I also had a hysterectomy in 2013 (due to more tamoxifen side effects) so some of the problems could also be down to that. 

Lots of people have given me lots of different advice about what I can do to help myself (!) - including a couple of people who have asked me why I don’t change to a different hormone treatment and all claim to know people who came off tamoxifen to go onto something else. The last time I saw my Oncologist she was adamant that tamoxifen was the right thing for me - they encouraged the hysterectomy so I could stay on tamoxifen without the risk of endometrium cancer. But is there anything else out there that anyone knows of?

 I assume that I am going through the menopause but don’t know if I’m post menopausal. She certainly didn’t seem keen to put me on to any post menopausal meds when I asked about this. I was Grade 1 stage 1 IDC  had rads but no chemo. I’ve never found out of what benefit tamoxifen is in reducing my risk of reccurrence. Just took their keeness to keep me on it last year as indication that I needed to be on it.

 

The last 2 years have been really tough for me and my family as I try to return to work and get a bit of my life back. fatigue makes it all so difficult and I’m not sure I can cope with another 3 years like this.

 

I’d appreciate any suggestions. Thanks.

 

 

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Hi ruthu…can’t help you specifically except that a friend of mine had small, grade 1 ER+ tumour removed - had rads but no chemo and has refused tamoxifen as the benefit to her was only 0.4% in 5 years; 0.7% in 10. This was with the full support of our local hospital who seem to have the ‘don’t overtreat’ and ‘benefit vs side effects’ approach. Have you looked at nhs predict tool predict.nhs.uk/predict.html which may be helpful in reaching an informed decision?

Hope that helps, and whatever decision you reach, as long as you are at peace with your decision that’s all that really matters at the end of the day :). Take care x

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Hi Ruth, I would strongly advise you to speak yo your oncologist or BCN. The benefit from Tamoxifen will very depend how strongly ER+ your cancer was I was 8/8 therefore I have to take Tamoxifen, for me personally it’s a no brainer, but if you were only weakly or moderately oestrogen positive the benefit will not be as great. Take care CC x