I have been advised to take Letrozole for 5 years as I have HER positive HR IDC that I had removed with no lymph nodes affected. I gave read up on side effects including hair liss and possible dementia in the future. As statistically it will only give me a 2% advantage to not taking the treatment any advice greatly appreciated.
Hi Sue
It is really difficult to way up what to do for the best isn’t it. Hope you get some wider reassurance on here but thought you might find this useful. Breast cancer treatments may ward off Alzheimer’s disease | oncology.medicinematters.com
There is some evidence that the medications reduce dementia risk weirdly! It is hard to know what to firmly believe x
Hi Sue
I’ve been on Letrozole for 3 weeks & feel very fortunate as for me the side effects are minimal. I get 2 or 3 hot flushes per day, in the evening or overnight.
I was anxious before I started it, but was reassured when I searched on this forum for letrozole side effects (or something like that) many many ladies have no side effects or minimal.
Good luck
Laura
Thanks for the advise. Think I might give it a try in the new year🙂
Although I’m not on Letrozole, I’ve been on Anastrazole for 16 months and have had only a little stiffness that wore off once I started moving the morning. So I think I would give it a go and see how you are with it.
Hi @sue2 I’ve been on Letrozole for 14 months and am also on it for 5 years. The range of responses to AIs is so massive that it’s impossible to predict at the outset how it will impact anyone. According to Predict, my survival is less dependent on Letrozole than even yours but I’m taking it because the few SE I have are completely manageable and are fading the more my body gets used to the lack of oestrogen. I want to think I’m doing all I can to prevent recurrence.
My advice to you is give it a try for, say 6 months. If the SE are too much or increasing during that time, then have a discussion with your BC nurse about stopping. It’s unlikely that any permanent damage will have been done in that time, as SE do dissipate when you stop. At least you’ll know then rather than speculating.
Hi I think you have the wrong Sue
I am Sue 123
I think you meant to respond to Sue2
Best wishes
Many apologies Sue.
Thanks for the advise. Think I will try in the new year🙂
I’m 69 and I have been given your same benefit of 2% if I took Letrozole. As I have an active job on the farm and I’ve experienced a disruptive menopause and wasn’t looking for another one with bells and whistles attached, I have decided not to take it. I had a long conversation with the oncologist who actually started by asking me how I felt about the therapies on offer post surgery! He understood my worries and he explained the risks/benefits - and allowed me to come to my own conclusion. (And it was so good to feel I was being included in decisions about my treatment!)
I’m NOT trying to persuade you to do the same as me. That’s just how I personally felt about a 2% risk in my own circumstances - in answer to your question. Some people will be horrified at my decision!
Had I been younger I might have given it a go. (And even taking Letrozole doesn’t eradicate the risk entirely - I’d still have another 2% risk!)
If you’ve come to the conclusion that you should try it, stick with that decision - knowing that you can always reassess and discuss the situation in a few months if necessary. Just don’t feel pushed either way at any time - it should be your own informed decision at the end of the day!
Thanks so much for sharing your journey with me. I am 61 and I started a new job 2 weeks before diagnosis. I have 3 granddaughters , a six month old cocker spaniel puppy who we got 2 weeks prior to diagnosis so quite a busy life. I was on HRT for 10 years which had to stop on diagnosis so suffering many menopause symptoms already . I am 99% not taking Letrozole but your mind still questions the decision. My husband supports any decision i make. My daughter says try and my son says no 
Very confused.
I’ve just been re-reading these posts…how are you now sue2? I have recently been discussing the same issue on another thread. It seems a common dilemma! Many people advising on these drugs have never experienced menopause symptoms - and before I ever experienced menopause myself, the symptoms always sounded less serious to me too!
I do wonder why people with an even lower risk/advantage than my 2% are taking a drug with higher risks linked to their side-effects, like osteoporosis etc etc? And some are suffering a lot. I can only suppose it saves the NHS a few hundred expensive operations a year by treating thousands of women with a cheap drug? So saving that money is understandable if you’re in charge of NHS spending, but might also be rather under-valuing the quality of life of a lot of those women?
It can play havoc with your head…but I am sticking by my decision not to take it and making sure I enjoy my fitness while I have it!
Hope you’re feeling good…x
I am still debating whether to take it or not. I keep getting told I should try it for a while and see how I feel but it’s the long term effects that are so worrying. It’s so hard to know what is best. My surgical oncologist thinks that as I have declined chemotherapy with Herceptin if you add this to declining Letrozole as well it ups the odds to 5% which in her opinion is significant. I personally think 5 in 100 people is small ? Very confusing. Well done for making the right decision for you and sticking to it.