Not posted for a while

Hi

I had a mastectomy in July followed by a short intense course of radiotherapy. I was prescribed Lexapro, which had bad side effects, then tried Exemastane again had  bad side effects so I told my GP that I would not take any further medication that caused bad side effects.

Now the oncologist has asked me to take Tamoxifen, I said that I would rather not take anything, he asked me to look it up on line, OMG the side effects are far worse than either of the other medications that I have tried. He also said I should take Ibandronic acid but from what I have read it is used for women at risk of bone cancer which can be a side effect of Tamoxifen.

Until the oncologist phoned me I was coping with the fact that I had cancer, after the operation he said they had removed it all and my Onco DX score was 6/100 and the lymph glands were clear so I felt fairly secure not taking the medication. Since his call, when he also told me that it was a much larger tumour than I was originally told, I have felt very worried. Has anyone else experienced the same problems.

  • Hi there ...

    I had a grade 3 breast cancer in 2017 ... and started tamoxifen shortly after ... I managed 2 years before  the side effects were making my body ache all over from joint pain ... I already had arthritis etc .. but this was way beond any pain I'd had from that before ...

    I researched and asked about the tamoxifen and the % it gave me ... I was told it's about 3% in keeping away more cancer ... so I weighed up if that percentage was worth the pain I was in ... l decided I had no life on it ... so slowly I came off of it , knowing full well I may be giving up that 3% ... but I couldn't function on it ... for me personally, I've never looked back ... yea I still get arthritic pain still , but at a level I can cope with and life is so much better ...

    I would not advise anyone to give up their tamoxifen ... for many they cope o.k ... and that's fine ... everyone has to weigh it up for their selfs ... and make your own choice... everything we do seems to come with so many side effects .. that seems the nature of the beast called cancer ... Chrissie x

  • Thanks for your input Chrissy.

    I have been a chronic depressive for most of my life and it is usually kept under control with medication, I can't possibly take anything that makes it worse which these eostrogen blockers do.

    The oncologist said he thought my risk factor without meds was 7% and  I would rather risk it even though I am scared the cancer may return.  My cancer was a two and it was diagnosed at a very early stage after I went to the GP feeling generally unwell.