Hi ALl
I have beeen to see Onc today and I am 5.5 years after diagnosis and 5 Years after starting Tamoxifen.
He wanted me to come off Tamoxifen now as he said it has no benefit after five years and because of my “good prognosis” and oestopenia due to a bloody chemo induced early menopause they are not recommending an AI. It only made a 1% difference anyway.
I have waited for this day for sooooooooo long but now I am scared. I suppose I felt that while I was taking it I was somehow safe ( stupid I know) but now I just feel it is there lurking and without Tamoxifen keeping it at bay it will come back!!
ANyone felt like this?
Love to all
Alise
Hi Alise
I know exactly how you feel. I am in a sort of similar boat to you. Saw my onc on Monday and he has taken bloods as he wants to check whether pre/peri/post menopausal. He said if I was still pre then he would take me off tamoxifen as in his words ‘there was no proven evidence of benefit for more than 5 years’. He mentioned putting me on AI’s if I was post menopausal but my concern is what if I am not post-meno? Does that mean I come off tamoxifen and that’s it? I came away with my head spinning.
I am slightly unusual in that I am er- but pr+ (highly positive) so won’t be getting full benefit of tamoxifen anyway but will be getting some benefit which is good enough for me. Therefore, I don’t know whether I will get much benefit from AI’s although he did say I would go on them if post meno. I have to go back in 4 months.
I had to have herceptin and I had similar feelings of angst when I finished my last one, felt I was letting go of my security blanket. That makes two of us then scared and anxious tonight!
Take care. Love xxx
deleted as same reply posted twice!
Hi, I remember feeling exactly the same when I came off tamoxifen nearly 6 years ago but since then I have been able to get on with my life without being as focussed on bc (has mx and haven’t had reconstruction so still have daily reminder but that apart I’m no longer constantly thinking about it).
Try to think of this as the start of a positive new chapter in your life - medication free! After a couple of months you’ll hopefully have forgotten that you used to take it and everything will work out fine for you.