I am 47 and have been on Tamoxifen for 5 years now. My oncologist checked my bloods and said I haven’t had the menopause, although I haven’t had a period since the chemo over five years ago. Sometimes I don’t feel so great (hot flushes etc) and sometimes I feel I should have more energy. I just wish I could feel normal again.
He says I can stop taking the tamoxifen now OR if I wish I can carry on taking it for another year!!. I thought five years was the maximum and I was looking forward to stopping it in a way. Now I don’t know what to do.
Has any one got any advice? Thanks.
Hi
I am 49 and was 44 at diagnosis. I was 8/8 ER +.
I have been taking Tamoxifen for 4 years now and was looking forward to just one more year. I am treated by Prof Johnston at Royal Marsden. Hospital. At my last check in april he announced that there is real proof that 10 years on Tamoxifen gives even more protection…I was not expecting that!
Bethy x
I’ve just started chemo but already been told it will be 10 years of tamoxifen for me, aLos 8/8 for ER and PR
Meant to say also at marsden but different doc
Hi,
Thanks very much for your comments. Very interesting. I will continue with my research. There is no rush but I guess I will make a decision one way or the other in the next few weeks.
Lorna xxx
I’m only on Tam since one year, was told to take it for five years, was 4/8 ER pos (PR not investigated). Why is it that some women are told to take it for 10 years and some five? Has it to do with the 8/8 ER +, I wonder.
Hi Ladies
I’m 42 and have a Grade 3 IDC. I’ve been told I’m ER+ 5/8 but path results will confirm final dx tomorrow. I have been told Tamoxifen for 5 years.
I think I’ll quiz my ONC tomorrow.
Martha xx
I will be starting Tamoxifen in July (8/8 er/pr +, aged 43 at diagnosis) and was told that I would be on Tamoxifen for 5 years, but when that stops to demand another hormone therapy as the research supports longer treatment. However, by the time I get there, they may be advising something completely different…
The research into Tamoxifen being more of a benefit over 10 years is very recent and good news for all of us. I was told I’d be on it for 5 years when I started on it 8 months ago but fully expect this to be changed (my gp informed me this was almost certain as the evidence was so strong) in light of the new evidence.
Hi I finished 5 years of Tamoxifen at end of March, I’m also under the Marsden and my BC was 8/8 er and pr+. I asked about staying on tamoxifen and was told it wasn’t necessary in my case. Don’t know what that means lol but I have appointment with BC nurse in July so will ask her.
Melxx
Hi,
Mel - how have you been since you stopped taking the Tamoxifen? Do you feel any different?
I will give my breast care nurse a call and let you know what she says. I thiink I was 4/8 ER+. I was also HER2+.
Lorna xx
This is worth a look as well:
cancer.org/cancer/news/news/study-ten-years-of-tamoxifen-better-than-five
Hi Lorna, I’m not really feeling any different, i’m still getting hot flushes and not sleeping well. The only thing I have noticed is that i’m not getting the leg and feet cramps as often . I am 51 so don’t know if it’s still effects from tamoxifen or if it’s the “real” menopause lol.
Did you call your BC nurse, I would be interested in what she says.
Melxx
Hi,
I have put in a call to my breast care nurse and will let you know what she says. Don’t know when she will call back. x
Hi
I was DX in July 2009 ER8/8 PR7/8
Was on Tamoxifen until a couple of months ago. Onc tested my bloods twice to see if I had gone through the menopause but it was inconclusive both times (even though I hadn’t had a period since chemo). He advised me to have my overies out or injections to properly stop them from working, and go onto an AI. I had an oopherectomy and was put on to Anastrozole as he advised that there was a 10% benefit of doing this.
I feel fine on the new tabs - no different to Tamox to be honest. I now just have to make sure I look after my bone health.
Sarah
Oh and just to add, he said I could stay on Anastrozole for at least 2 more years if not longer.
Thanks for the link Lornadonna - I’ll have a read in a bit.
I asked my onc yesterday about the research for Tamoxifen and he said that he knows all about it an yes, the evidence is strongly pointing towards the 10 year mark.
He also said that he would prescribe me for 5 years however, if I wanted to do it for 10 years then it is something which he would feel confident in saying yes to.
Oh, I’m PR+ 5/8 and HER2-
Martha xx
Hi, long time since I’ve posted on here! I am in the same predicament. I’m in my last month of Tamoxifen after five years. I’ve seen my oncologist and he has said that the recent trial (ATLAS) results where very early days and it was a very small trial. He couldn’t give me definite advice as to whether to keep taking the tabs or stop but said he’d wholeheartedly support my decision to stop if that was what I wanted. He did say that he might have a different answer in ten years time but it was too early to say.
I have decided to stop now instead of taking them for another five years because I hate taking them, mainly because it reminds me of my cancer every day and I’m fed up with the side effects (although they have been doable). It is daunting but feel I have to move on now and try to get on with my life. I will have to take the consequences whatever they may be.
Im 53 by the way so unsure whether I’m perimenapausal or post menapausal.
Hi Greenpea I am surprised you are on Tamoxifen at 53 I would have thought you might have been moved onto a different drug as there are more choices for women who are post menopause or at the stage between (Arimadex) Maybe you should ask about other alternatives. It’s easy for the onc to say don’t take it but they are not walking in your shoes and you don’t want the BC coming back. Just looking at reoccurrence it does come back for a lot of women and quite often after we stop taking the drugs. I am no medic but if taking it for longer “might” improve chances of protection then I want it!
Hi Carrie35
yes I was given the chance of A.I.'s but having read of the horrendous side effects decided against it. My oncologist’s argument was that the NICE guidelines were still for five years of Tam and until they change it, he feels it is best to keep with the guidelines.
I work in palliative care and am seeing the worse of the situation everyday. I have to keep reminding myself I am not in that unfortunate situation.
I am scared of not having any more treatment but feel for my long term sanity I have to move on. I’m afraid I’m stuck with the job for at least another two years otherwise i’ll lose my pension rights to retire early at fifty five.
I will keep reading the research and hope more positive results will come about.