I was also on Tamoxifen following DX with ILC i Had WLE and RADS after a few months i have stopped taking meds due to side effects, when i spoke to my surgeon he said 5% chance of it coming back.
i think its personal choice for me the SE were too much i am now back to fulltime work and feeling good fingers crossed my 1st year check up 22 nd December will be clear.
good luck with whatever decsion you come to.
best wishes x
Hi Chascat and Maryland. Thanks for your replies. I have used the NHS predict tool and on that the benfits are similar to your friends Maryland. I have asked my Oncologist how ER+ I was and it doesn't seem to be documented anywhere. However my Oncologist assumed from my Breast Surgeon's wording on his report that I am strongly + so maybe that is why they want me to stay on it despite the low grade/stage.
I've always been totally committed to the 5 years but it does feel like my life is such a struggle at the moment if I did know the benefit was low and in the absence of an alternative I might stop taking it. Big decision though 😞
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.