tamoxifen longer than 5 yrs

Hi all,i have just had my 4 1/2 post DX appt and my onc wants me to stay on Tamoxifen,i was DX at 35 and can only think its to with my age(now 40),anyone else took it longer than 5 yrs.

My ONC says that i will more than likely be on tamoxifen for 10yrs as i was diagnosed at 32. Common in america by the sounds of it. She feels i need to be post menopausal before i come off it and i would only be 37 after 5yrs of tamoxifen.

S

I was on it for six years and then onc said side effects might outweigh benefits and advised me to come off it.

Tried femara with zoladex to put me in menopause. Initially could not take it and was without treatment for a year.
I then developed secondaries. I guess the side effects from tamoxifen would have been easier to handle.

I now am on femara again (still with zoladex) also zometa and herceptin.

julie x

Hi, My friend has been on Tamoxifen for 22 years! she was diagnosed when she was 41. So she is now 63 and still on it!
She lives in Australia.
Sandra

Hi
I was diagnosed at 44 (nearly 53 now) and was initially told that I would take Tamoxifen for 5 years.

My onc has since recommended that I take it for 10 years in all, so another 2 to go for me x

I actually feel a bit tearful reading this…if only x

Oh Juliet,
So sorry you are tearful reading this - I suppose hindsight is a wonderful thing.

I can’t imagine how you must be feeling and unfortunately I have no words of wisdom that will comfort you ( I’m not very good with words)
but I just wanted to send you cyber hugs and good wishes x

Hi Juliet,
Just wanted to send you a Very Big Hug
(((((((((((((((XXX)))))))))))))))
Sandra xxx

Hi Julie

I too wish I could go back in time, I wonder if my secondaries could have been prevented if I had stayed on Tamoxifen or a different AI. I had Tamoxifen for 2 years, then stopped taking it and had an oophorectomy. I then was changed onto Aromasin, which I took for 9 months. After 7 months I started to get pains in my hip and went for an x-ray and was then diagnosed with secondaries soon after. I do tend to wonder if the Tamoxifen was working, then the Aromasin didn’t as 7 months seems a likely time in which to develop. But I guess I will never know! They could have been there undetected on the Tamoxifen I guess. So I try not to worry too much about it. When I was on Aromasin I had no hot flushes at all, now on Femara I have them all the time so I keep trying to tell myself that that’s because it is working and stopping the oestrogen.

As Doxey said, how great to have hindsight!

Takie care Nicola