I went through 7 months chemo, 15 days radio, 2 lumpectomies in the same breast. I was age 39. I have been on tamoxifen for 18 months, no sex drive, hot flushes, itchiness in private parts, sweating, no periods, my bones kill, am tired All the time, I have worked throughout though and had a nap on returning home from work on top of looking after my children age 12 and 14. I do get fed up, fed up of the 2 stone weight gain everything is a struggle but hopefully a worthy struggle. I am guna carry on taking them and plodding on as I am frightened not to, I was stage 2c. I want to see my grandchildren and I am hoping that I will. They are horrible tablets and make me feel awful but it’s got to be worth it. My friend stopped taking hers and it came back so that’s the reason I carry on. Come on ladies lets have a moan but let’s keep focused and realise we are taking them for a reason. 3.5 years to go and counting but I will succeed, I have to. Thanks for listening. Xx
At the end of 5 years Tam, in 2010 My onc said it was more dangerous to continue on it than the chance of reccurance. I had ER PR+ tumours, had mx,chemo, radio and Tam. The side effects were horrendous so I was glad to be off it, but worried about taking nothing, am premenopausal so AI not an option then. Two n half years on have reccurance, four tumours grade 2 ER PR+ up to 27mm. Having had radio and chemo, it’s not an option again, so my only treatment after double mx and SNB is Tamoxifen. I feel so worried about the future, with or without Tam, four tumours in such a short time off tamoxifen, maybe they were there all along…?hard to know what to do next, is it worth the awful symptoms again for little or no protection anyway.?or did it work for the five years and is now my best chance? Think my expperiance on this thread is a cautionary tale, for those only offered five years, something to think about, like someone else said, we all having different experiances. Po. X
That’s exactly what I think so I am with you on this one and will plod along, better to be safe than sorry. Big hugs lovely we will get there xxx
At first, doctors adviced to take tamoxifen for 5 years, as this is the optimal duration of treatment for breast cancer and the optimal time for the side effects as another cancer wich may caused by tamoxifen. But if liver check ups an vomb and ovaries check ups are good - then no vorries about another year on tamoxifen. Just need to keep eyes on this organs - that what my doctor said. However, she thinks that in any case much safer to remove the ovaries and uterus, and then use one of the anti-estrogens. Specially for women who have got the progesterone receptors as well. Because no one of medications is blocking the progesterone.
Atsaukt labojumus
Alpha
I just seen an article promoting ten years on tamoxifen !! I am only on year 3 but I suppose it is down to individual oncologists and the research that they use.
NICE guidelines are still five years , despite the new research. When I was discharged (April this year) I pressed this point - I had the research printed off as I felt I shouldn’t be stopping at five years if 10 were better. However my onc said they would only change if the NICE guidelines changed. So no more tamoxifen.
What is really stupid, in my opinion, is if I were menopausal I would get AIs after five years of tamoxifen, but as I am not (I am peri-menopausal) I am cut off from treatment. The hospital staff agreed with me that this doesn’t make sense, but they are only following the guidelines.
Yeh - it is silly in England - and if doctors are going over guidelines - then they are not covered of complains - that is the reasson why they are so strict. But sometimes pattient suffer of guidelines more then without.
Zibzab, Hi, Do you mean AI’s? Do they block progesterone as well as oestrogen? I am looking into secoond opinion regarding Tamoxifen only, but would need oopherectomy to take an AI. All so confusing, but would appreciate if you know answer to progesterthin and AI. Thanks. Po. X
I think the alternative to Tamoxifen is just as bad if not worse - hard to know what to do for the best. I would rather not take anything. I don’t want to go on arimedex as that seems to be horrendous.