I’ve been on Letrazole for 4yrs I was diagnosed 2020 breast cancer estrogen positive and I had 2cm of cancer removed with about 3-5 lymph nodes. I didn’t need chemo or radio just Letrazole 2.5mg for 5 years, I’ve had a horrible time taking this mainly not been able to walk for the pain in my legs feet hips and back so a month ago I stopped the Letrazole I’ve not told any doctors and I know the risks but my life was crap!
I feel better and have been walking again but there’s a tiny tiny bit of me that’s unsure I don’t know if I’ve done the right thing. I’m 64yrs old and got a few health issues I’m type 2 diabetic I’ve got a very fatty liver and a liver cyst I’m overweight but eating very healthy at present trying to lose fat from my middle I had a mastectomy and the right breast reduced significantly any advice would be appreciated Thanks for listening xxx
I would recommend loosing the weight as quickly as possible, that’s very important, you will feel better, and you’ll be healthier, stay clear of sugar!!
All the best,
Trish
I’m in the same boat in that I decided to stop Anastrozole for similar reasons to you though I only stuck it out a few months . My joints are much better without it as is my hair and my memory. By taking it for over 2 years I’m sure you will have got some benefit from it . My advice would also be to lose weight ( I need to take this advice myself as well solid lose some and have put it back on ) .I do intermittent fasting when I can though as a diabetic that might not be possible for you.
At some point you will have to bite the bullet and tell your team - I would suggest doing this via your BCN . You will probably be offered alternatives possibly Exemestane which my friend who also abandoned Letrozole is now taking. I was lucky enough to have clear lymph nodes and a very early low grade cancer my Breast Surgeon said from the off that if I didn’t get in with endocrine therapy it would be reasonable for me to stop. If I was a higher grade I might have stuck it out linger or tried other options. I’ve talked it through with my BCN as a sounding board and decided to stick with my decision not to restart but that’s not to say that I don"t ever worry about it - I do , it’s hard to shake that if I’m honest . Xx
Happy Sunday Jazzjue60,
We are all here for you, first give your a pat on the back for getting this far with Letrazole, I think anyone who has done 4.years is greatly respected, myself I only managed three and half years (I don’t know how) made be so uncomfortable and irritable.
Speak with you team, when you feel ready, however please don’t beat yourself up over this. Take good care, one day at a time.
Wishing you health and happiness ahead
With the biggest hugs.
Tili 
Hi @jazzyjue60 I’d like to echo @Tili’s congrats on getting through 4 years, which very many do not. So you had a mastectomy and some lymphs removed but didn’t need chemo so presumably the lymphs were clear and the grade was low? How long are you meant to be taking Letrozole for?
I’m also in the camp that it would be the right thing to do to let your BC nurse know that you can’t do it anymore. Particularly as you have co-morbidities. If you haven’t already done it, you could ask her to go through the Predict model with you to see just what your potential risk is in stopping endocrine treatment. There is a new version of Predict (version 3) which gives more up to date data on survival percentage but I’m not sure it has been cleared for use by which ever body dictates these things to the NHS. Either way, results from the old or the new Predict might sway her into agreeing that you’ve done enough.
I started taking Letrozole the day after my 67th birthday in October 2022. I’m on it for 5 years. I don’t have much in the way of side effects but I may not complete the course, depending on the results of my next DEXA scan. Nothing will persuade me that quality of life is not the most important thing. Keep us informed as to how things go.
Flan Tilli & JoanNne Tigress
Thankyou so much your messages mean everything to me and I’m sticking to my decision, also I’m going to ring my BCN
I’m going to ask about that I’m going to ring tomorrow lots of love my ladies 🩷🩷🩷🩷xxxx
Well done for getting so far with it and hope it goes well talking to your BCN . Wishing you good health going forwards.
With love Jo. Xx
I talked to my oncologist about Predict two days ago and she said London oncologists have banded together to use an old version of predict. I think this is stupid as there’s more data available now and more people are now benefitting from earlier detection and a greater range of treatments and maybe better surgery.
I was annoyed because I wasn’t told my predict score after my diagnosis in 2022 and I can’t understand why a) they keep it so secret from patients at Guys where I had treatment and b) why they don’t use the latest version which I thnk has been around for quite a few years now.
I feel we are mushrooms - kept in the dark with poo over us. Mind you I am known for my wish to know everything and check everything out. Shame both of my parents had doctorates in pathology…
Seagulls
i have stabbing pains in my knees and ankles and find my right leg gives way sometimes while I am walking. I also have very dry skin on my face and under breast areas and legs. When I told the oncologist this she seemed uninterested. So I have decided to finish off the packets I have and then go cold turkey.
Think Mike Mosley - he went for a walk at midday in blazing heat. Just one thing Mike…what made you do it? Only mad dogs and Englishmen go out in the midday sun.
A short life but a merry one - bye bye paternalism hello freedom of choice - die young at over 70 or continue on to multiple diseases of old age such as dementia, broken hips, bent backs, rectal prolapse, bed sores, heart failure, bad feet, incontinence.
My mother age 97 has all these and is on end of life care at £7000 every four weeks plus £160 a month for toiletries and £25 for a haircut. In her previous home she was sexually assaulted by another resident, need I say more? She is deprived of her liberty ie locked up even though she can’t walk, etc etc.
Not what I want for myself. Dad died age 95 in 2014 a similar state having told me he thought people were living too long.
Old age is not for the faint hearted. Crack open the champagne, get out the fags and indulge now! Weirdly enough I don’t drink, smoke or lie around - I am 5’ 8" 10 stone 3 lbs and as vigorous as I can be for someone made ill by letrozole, AdCal, antidepressants etc etc
Seagulls
This resonates with me so much Seagulls . My Dad used to say to me " I’m too old to live " . Whether you decide to stop or continue I’m wishing you improved health . I felt an improvement with my back and finger stiffness after about 48 hours after stopping but it took a lot longer for other symptoms to settle . I still don’t feel quite as I was if I’m honest .Xx
I hope you go through with it Seagulls as I, despite having had minimal SE, at least ones that involve pain, have decided to do exactly the same thing. I had my 69th birthday on Sunday, away with friends in Malta, who treated me like a queen. I said “ this is a birthday I’ll never forget - at least until the dementia kicks in” for a joke but on mature reflection, I know at a cellular level that this is what I most fear and expect as there has been so much in the family, including my Mum, her Mum and her older sister. I’m based in London too so expect resistance from the oncologist even though my scores on both Predicts are exceptionally low. If I stop the Letrozole I can also stop the Atorvastatin. As an ex-lawyer, it goes against my natural grain to dismiss experts in their field but I’ve found my big girl pants, just need to pull them up.