Letrozole versus Tamoxifen

I have been away from here for such a long time, but I know there’s always help if you need it!  I now could do with some guidance etc… 

I have now been on Tamoxifen since March 2009… And my checkups are now only yearly, and to be honest 5 minutes at that, plus don’t get to see the original oncologist, just his registrar or associate…and not seen any bc nurse for years. I have to always go to my gp if I’m concerned as I can’t ring up and get an appointment at the hospital anymore. 

I’ve been told I need to go onto letrozole as blood tests indicating menopause (53 now). I’ve been diagnosed with osteopenia and I’ve gained weight over the years which I find incredibly difficult to lose. Exercise has been intermittent due to joint pain (initially dreadful in the earlier years) but has not been too bad but still not great. However, due to so many years beyond my bc diagnosis, I’m very lucky that I don’t think about it that often…

Having read the side effects of Letrozole and some of the posts on here, I am rather concerned whether I should accept the change as I’m not sure I could face having to cope with the pain and stiffness again that I had at the beginning of Tamoxifen and means, in my head, I would be consumed with cancer thoughts again.  

FYI - My initial diagnosis was a grade 3, hormone receptive tumour. I had my sentinel and a few nodes removed and it was clear of cancer cells… I had a WLE, chemo and then radiotherapy, then the hormone therapy. tamoxifen… 

So, what do you suggest I do?.. Help! 



Hi Flo,you don’t have to change,I am 52 and been on Tamoxifen for a year ,I’m a pretty sure I am now post menopause although without a blood test would be hard to know.They told me I can stay on the Tamoxifen for 10 years if I want as it can be used pre and post menopause .Could you try the Letrozole for a couple of months and see whether it agrees with you and if not change back?

Hi Flo62

i was originally told 10 years + on tamoxifen, but then onc slipped into the conversation I would be changing to Letrozole after 2 years.  I haven’t really had too much of an issue with tamoxifen, apart from a couple of flushes a day & a bit of hair loss, which has been resolved with lower dose.  I have done a lot of research into this (ex nurse so have read all the medical research) & concluded I’m sticking with Tamox.  If it ain’t broke, don’t fix it.  I don’t like the SE of Letrozole, in particular joint pain, effect on bone density & blindness.  I am a very fit (except BC ha ha) & active person & my quality of life would be seriously impacted if I couldn’t do the active things I love like golf, yoga, walking & tennis.  When I read all the stuff, it became clear that the main incremental benefit of Letrazole was in the first 2 years, which you are well past, & I was pre menopausal, so will also miss that advantage.  It is also only a small % benefit 88 vs 83%, sounds big, but it’s 5% of whatever your recurrence risk is, in my case c.30%, so in absolute terms the difference in my case was only 1.5 in 100 less recurrence & I took the view that wasn’t worth the risk.  I hope I have explained that in an intelligible way.  However, in terms of staying on T, the also unattractive risks associated with that do increase the longer you take it for BUT I was told that for aggressive tumours, if it’s going to recur it will tend to do so sooner rather than later because, by definition, it’s a fast grower.  You are 5 years & counting, so your recurrence risk is probably lower now than after treatment. So 5% of a lower risk. Obviously you need to make the decision, but I reckon you could  go with what your intuition is telling you without exposing yourself to too much additional risk or at least interrogate the doctors about the SE/absolute number of people it will help.  Congrats on staying clear so far.  xxx

Flo Hmm that’s tricky then, perhaps your GP could give you some guidance, or if you still see the onc once a year e-mail his/her sec about a week before saying you would like to discuss recurrence risk to give them time to review your notes & prepare.  BCNs seem to vary widely. I am still on Herceptin, so technically can still access mine, although she often doesn’t bother to answer, even for important things (& that’s a private service, so I can only imagine what the poor NHS BCNs are up against in terms of workload). My view would be that only onc can provide you with that info.  I did find a slide on recurrence in my early research, but wouldn’t have a clue how to access again.  It’s hard to come by because every case is different & you really need to make sure you are matching info with your exact parameters.  Guess you could ask the GP to write to the oncologist on your behalf, getting an up to date figure for you.  Yes I am still taking Tamox.  xx