I was diagnosed 5 years ago (when I was 43) on 1st March and am still NED (as far as I know ;-). My BC (grade 2 her2 positive) was also hormone receptive and I’ve been on Tamoxifen since September 2007 meaning that it will be 5 years this year. However, Ive been wondering about whether I will finish Tamoxifen or whether it will continue. As I am suffering a lot of menopausal symptoms part of me would be pleased to stop taking it although Im not sure if this would make my symptoms any better.
Your experiences would be most welcome and also if you know what the current thinking on this is now.
I am the same as you, dx Feb 2007, I started taking tamoxifen in Oct 2007 and I expect to stop this October. I have my next checkup with my onc in May when I assume this will be confirmed.
One thing I will need to ask - some people then get put onto an AI for 2/3 yrs after 5 years of tamoxifen but this has never been mentioned to me. I don’t know what the criteria is for this, so I am going to ask in May.
Like you I am deperate to lose the menopausal symptoms, and really hope to live life without hot flushes and broken sleep.
Hi I was diagnosed in September 2007 with grade 2 17mm 1 node involved,er+ pr+ started tamoxifen in May 2008.I had read about some women going on Al’s after tamoxifen so I asked my oncologist, he said that with my diagnosis it wasn’t necessary.I have my last oncology appointment in October and finish tamoxifen in May 2013.
Hi there,
As far as I understand it, it depends on your age and if you are premenopausal when you start tamoxifen. If you are younger then its normally 5 years tamoxifen and then stop. If like me you start it in your late 40’s they often change you over once they think you have gone through the menopause. Hope this makes sense!
Tessa x
I started Tamoxifen in Oct 2009 aged 42. At my last onc apt I asked him how long I would be on it and he said, five years on tamox then they would do a blood test to check menopausal status, depending on that would probably have two years of something else (not sure what something else would be)
I haven’t had a period since chemo in summer 2009 so may have been pushed into early menopause, who knows?
Have just seen this thread and interested to know seeing as you all have been on Tamoxifen for a few years how you have been on it.
There is a lot on here about people having problems and side effects at the beginning, I am just starting to take it, but not much about people a few years down the line and whether any of the problems persist for the whole 5 years.
I have had constant problems with hot flushes. I have tried just about everything to try to combat them but they always come back. Some remedies have given me a few months relief, but no remedy has lasted the course. Last year I was at the end of my tether and was ready to give up on tamoxifen, but then found something else that worked for me, but that seems to be failing now. So I will try to soldier on till my five years is up in October.
Many women don’t get side effects, and for others the side effects reduce over time. It is only the unfortunate minority who have ongoing problems.
Hi SamLee
I took tamoxifen for five years. I didn’t have any side effects until I came on this forum after about 4 and half years. Until then I just assumed I was:-
* Loosing my marbles
* Getting old.
* Was unfit
* was suffering from arthritis
* Going through the menopause (I was 49 on dx)
Now I’m about 8 months tamoxifen free. And evrything feels better. (Just had 5 month issue with 2 kidney stones on same side as BC but that I hope is unrelated but you never know)I am doing zumba 2x a week and learning how to jump and hop again. Weight going down very slowly and I feel much fitter if 6 years older than I was. I still havent started menopause!!! My memory isn’t what it was but I don’t let it worry me any more and use my phone to make lists and organise myself.
I hope this helps
Regards
Chinook
Hi,
I was initially told I’d be on Tamoxifen for 5 years, back in 2002 when diagnosed.
Since then, my onc recommends 10 years so I will continue with it until November this year.
He hasn’t mentioned any further treatment.
I have remained (hopefully) NED so will do whatever it takes to remain so x
PS I have been one of the lucky ones to have not suffered the awful side effects endured by many, so for me it’s relatively easy - commiserations to those not so fortunate x
thanks so much for your posts. I have looked around the internet a bit as well and found that some people of my age with what I had have been put on an AI for 2 years following Tamoxifen (been on the adjuvant online site!). However, I think this depends if Im post-menopausal. I have had about 6 periods in the last 5 years but as 2 of these were last August I think that means Im not post-menopausal! I think you have to be 2 years without periods.
Like Roadrunner my side-effects are mostly hot flushes and these seem to come and go, sometimes really bad for a few weeks and then calming down. I was looking forward to finishing hormone therapy but if my oncologist thinks I will benefit from further medication then I will happily take it if it keeps the BC away!