After 5 years of Tamoxifen why now Letrozole ???

Hi There,
Havent visited here for nearly 4 years so most wont know me. Brief history DX at 38, grade 2 IDC 1 node. Several WLE due to dodgy margins, 6 chemo and 15 rads, 5 years Tamoxifen. 6 months Tamoxifen then finished ???
Just been told today after my yearly Onc appointment that possibly going to be put on letrozole when tamoxifen finished. To be honest I am bloody fuming, I,ve had horrendous hot flushes, very little sex drive and fuzzy head possibly caused by sleepless and sweaty nights. The fuzzy heads and tiredness were so bad that I took redundancy from a job I had been in for 15 years as I felt unable to cope anymore. I carried on with the treatment.
Looking forward to ending Tamoxifen and therefore my ties with this disgusting disease and moving on, but my hopes have been dashed. Been reading up on Letrozole and seems to be best for post menopausal women. Recent test at GPs and I was peri menopausal which I think means just about to go into it, I only have 2 periods a year.
Has anyone on here refused to be put on further hormone treatments? I am seriously thinking about it.
Sorry to go on and best of luck and lots of love to you all.
xx

I am 49, been menopausal since chemo at 44, due to finish tamoxifen this October, asked about Letrozole and told not menopausal enough for it (no blood tests done - onc just going on status at diagnosis)! On the one hand I am delighted to be finishing drugs soon, on the other worried that I’m not getting as much protection against a return as possible. So I am pretty much the opposite of you.

why are there so many different opinions? ive had 18mths of tamoxifen(aged 51) just come off it cos i am having further surgery next wk,then after surgery im going on letrozole but i havent had any tests or anything to confirm post menopausal,should i ask for bloodtest or something to confirm this before just accepting whatever decision is made on my behalf??Andrea im sorry youve been advised you need further treatment just when the end was in sight.Hope you find the strength to make the right decision,good luck
Love to all,Di.x

Hi,
I didn’t refuse Letrozole, been on it for 3 years but questioned why now on it for 5 years after I had been prev told only 3. My Onc said that as node involvement and 6/8 ER he strongly advised me to stay on it. Basically not having a good time, not aches and pains but stomach and mouth problems that started 6 months after starting Letrozole. Being treated for Burning Mouth Syndrome but it is menpause related and common in that age group, nobody wants to know about the side effects of the drug.
I have never had any blood tests either.
I gave up my job 2 years into starting Letrozole and thought that I would feel better but that hasn’t happened. Trying to work a fulltime week, getting to work etc and the drug was getting too much. I was on Tamoxifen and was fine on it but now exactly the opposite with Letrozole.
If I was you I would give it a go and see what happens.
Hazel

Hi Di
Yes you should have your menopausal status confirmed by FSH blood tests before you go onto letrozole. If your ovaries are still producing oestrogen, even in small quantities, letrozole will not stop that.
I’m in similar circumstances, coming to the end of 2 years on zoladex plus tamoxifen, when I’ll be 53. I’ve been told I’ll be switched onto aromatase inhibitors but only once it’s been proved that I’m post-menopause by at least 2 or 3 blood tests which all show the same conclusion (because the blood test is not very reliable).
Unless you’ve had your ovaries removed, I suggest you ask the question about blood tests.
CC x

Thanks everyone for your comments. I suppose I,ve got 6 months to think about it. Was looking forward to sleeping better and hopefully losing a stone that has crept on along the way too that seems impossible to shift. x

I can’t help you with the “why” as every oncologist seems to have his or her opinion. But what I would say is don’t forget, you can just always say No. But the most important thing is only you can decide whether or not you are happy to say No. At some point you will, along with the rest of us, come off treatment and it will be in the lap of the gods as to whether or not it comes back. That is something we have to live with and the chance we all take at some point.
I had such horrendous se’s on Tamoxifen that I chose to come off it after 6 months and go without, and go for quality of life. But I am quite happy with that choice. My onc was furious though but she didn’t haven’t to live with the side effects and the disruption to every day life.
As you say you have 6 months to think it over. But don’t let anyone tell you what to do, only you can decide what is best for you.
Sam

Evidence on efficacy of certain drug regimes changes all the time so what patients were told several years ago may now be out of date with current practice. Personally I would be “fuming” if there were a medication/treatment regime available but I was not given the option. You’ve been given the option - it’s entirely up to you whether to take letrozole or not.
I was prescribed Tamoxifen but insisted on a FSH blood test to determine menopausal status as the assumption was that, as I was in my mid-40s I was pre-menopausal and lack of periods was because of use of Implanon. I don’t like medical assumptions. Guess what, I was post-menopausal so able to go on AIs which was much more appropriate. I was told I would be on AI for 5 years and this has now been revised to 7.5 years and I’ve no doubt it will be revised again. So long as I am offered treatment on the basis of the best information available at the time.

I had my ovaries removed a year ago but they never took me off tamoxifen.If it wasnt for the fact that i have surgery next week i would still be on tamoxifen and at my pre-op appointment i asked wether i should come off tamoxifen,otherwise i would still be taking it.
Di.x

Hi Di
Well if you’ve got no ovaries the blood tests would be a total waste of time. You can’t be much more definitely post-menopausal than not having ovaries! So the question to ask is whether you should be switched to an aromatase inhibitor.
CC x

hi cc,
i cant understand then why ive been on tamoxifen for the past year,and if it wasnt for the upcoming op i would still be on it,it seems to be,certainly in my area,that once youve had your diagnosis and subsequent operation you are out of sight,out of mind.
di.x

Hi Di
It sounds like the only reason someone re-read your notes was because you asked the question about Tamoxifen. If it wasn’t for that, they would have kept you on it. The Tamoxifen won’t do you any harm and is giving you a lot of protection, it’s just that aromatase inhibitors are a bit better. Some women stay on Tamoxifen regardless of menopausal status, but that’s not the latest treatment.
CC x

Thanx cc,
feel reassured now,thankyou.
Di.x