What next after 5 years of Tamoxifen?

[pollym]

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]

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]

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]

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]

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