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What next after 5 years of Tamoxifen?

4 REPLIES 4
pollym
Member

Re: What next after 5 years of Tamoxifen?

Glad you are still running! I did PM you so I hope you got that.

There seems to be different ways of handling patients like ourselves! Maybe they just assume you are not post-menstrual, who knows? The main point is that we have had the stuff that makes a significant difference to our outcome like Herceptin and 5 years of Tamoxifen so that is good!

I am hoping that I start getting rid of some of the side-effects I had whilst on Tamoxifen and I wouldn't even mind getting my periods back if it meant other stuff got better!

Take care,
Pauline

RoadRunner
Member

Re: What next after 5 years of Tamoxifen?

Yes, still running! Did the London Marathon for Cancer Research this year, and am doing the Leicester 1/2 marathon this Sunday.
Yes I thought too that two years of AIs was beneficial, and discussed this with my onc but she was definite that I didn't need it.

pollym
Member

Re: What next after 5 years of Tamoxifen?

Hi Roadrunner
I must admit I was surprised I wasnt post-menopausal as I have had 4 periods in the last 5 years although saying that 2 of them were about 14 months ago. I was told that 2 years without periods and they would think I was post-menopausal. The blood test was regarding hormone status and it definitely said not post-menpausal.
However, I am surprised that you have not had a similar blood test as I thought that there was now evidence to suggest that 2 years of AIs (I think) after Tamoxifen for postmenopausal ladies was beneficial - however, I might have this wrong!
I have now had no Tamoxifen for 10 days and dont feel any differently yet, maybe even more hot flushes! I have had twinges in my ankles and knees though which is not uncommon when you stop.
Finally, hope you are still running! I am running but not as much as I was a couple of months ago as I am back to work nearly full-time. I am hoping, probably in vain, that not taking Tamoxifen will improve my times!
Take care,
Pauline

RoadRunner
Member

Re: What next after 5 years of Tamoxifen?

Hi Pauline,
I will finish five years of tamoxifen next week, and it's nothing else for me either. I have not been offered any blood tests (although I assume I am now post-menopausal, having stopped periods during chemo five years ago). I have queried whether I should go onto an AI after tamoxifen, as so many on here do, but was told there would be no benefit - and I was signed off by my onc at my five year check up earlier this year. I don't understand why the protocol seems to be so different at different hospitals, but I have to assume that my onc is doing whatever is best for me. Although I have looked forward to next week for a long time, because of the continuing hot flushes and lack of sleep, it is also scary that there will be no more treatment to ward off this dreaded disease.

pollym
Member

What next after 5 years of Tamoxifen?

Hi everyone, I have just passed the 5 years of Tamoxifen. I had a blood test to see whether I was post-menopausal. The blood test showed I was peri-menopausal apparently. So, the doc said that was it, no Tamoxifen any more and nothing else either!
Originally, I had grade 2, 4 out of 6 lymph nodes positive, her 2 positive and oestrogen positive. She said my outlook was good but that it could still come back. She said there was no benefit to taking Tamoxifen any longer.
What I dont understand and perhaps some of you clever ladies could tell me is why you get treatment for longer when you are post-menopausal? Is it more likely to come back if you are post-menopausal. I always thought it might be the opposite.
I am glad to stop taking it as I have some symptoms which I think are due to Tamoxifen and I would love to get rid of them! However, I am also scared at the thought of all that Oestrogen romping around my body!
Pauline