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5 years on tamoxifen - what now?

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Re: 5 years on tamoxifen - what now?

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.

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Re: 5 years on tamoxifen - what now?

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
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Re: 5 years on tamoxifen - what now?

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.

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Re: 5 years on tamoxifen - what now?

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.

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Re: 5 years on tamoxifen - what now?

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.

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Re: 5 years on tamoxifen - what now?

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.

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Re: 5 years on tamoxifen - what now?

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
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Re: 5 years on tamoxifen - what now?

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
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Re: 5 years on tamoxifen - what now?

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
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Re: 5 years on tamoxifen - what now?

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.

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Re: 5 years on tamoxifen - what now?

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!

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Re: 5 years on tamoxifen - what now?

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.

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Re: 5 years on tamoxifen - what now?

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
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Re: 5 years on tamoxifen - what now?

Oh and just to add, he said I could stay on Anastrozole for at least 2 more years if not longer.

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Re: 5 years on tamoxifen - what now?

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

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Re: 5 years on tamoxifen - what now?

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
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Re: 5 years on tamoxifen - what now?

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

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Re: 5 years on tamoxifen - what now?

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Re: 5 years on tamoxifen - what now?

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
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Re: 5 years on tamoxifen - what now?

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

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Re: 5 years on tamoxifen - what now?

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.

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Re: 5 years on tamoxifen - what now?

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......
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Re: 5 years on tamoxifen - what now?

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
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Re: 5 years on tamoxifen - what now?

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.

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Re: 5 years on tamoxifen - what now?

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
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Re: 5 years on tamoxifen - what now?

Meant to say also at marsden but different doc
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Re: 5 years on tamoxifen - what now?

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
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Re: 5 years on tamoxifen - what now?

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

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5 years on tamoxifen - what now?

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.