Thoughts on stopping Anastrozole after 10 years.

Hello all

So interesting to read all the replies, I have 5 weeks left on anastrozole! I spoke to my oncologist about continuing but my last DEXA scan showed I have osteopenia and after 10 years the side effects are too great. 
I am interested and excited to see how I will feel and need to start looking after myself a little more now my security blanket has gone!

I will let you know how I get on.

Merry Christmas xxx

Hi Jediknight 

Merry Christmas to you and all here!

Interesting to see this thread reawakened. I have just finished my 7 years of Anastrozole 4 weeks ago! In terms of side effects, I don’t feel any difference yet but I think it’s too early, I’m thinking a few months? I was sort of dreading the loss of the safety net but actually it’s all been overshadowed by a sudden onset of bilateral uveitis (inflammation of the middle eye, both sides), just before my ‘finishing date’.  So have had multiple trips to the eye clinic and, as it’s in both eyes, which is more unusual, they’re still looking into if there’s an underlying cause eg auto immune disorder that I didn’t know I had. I’ve even had a blood test for tuberculosis!?! Apparently there’s an ocular form of it. I’m not worrying unduly as I’d actually rather have an explanation, whatever it is. I’ve never had anything wrong with my eyes so it’s all new. And it’s frustrating not to be able to drive due to the ongoing blurred vision. I now wake up to eye drops instead of taking my Anastrozole. 

Anyway, good luck with these last few weeks and a new year without the pill popping!! 
Love and hugs, HFxx

Merry Xmas to all.

i asked my GP about continuing letrozole, I am at yr 3 and clear. She said they would write to the oncologist for advice at yr 5.

is that typical, you don’t speak to your oncologist to discuss continuing treatment ? 

Hi Gardinia 

I think it varies from what I’ve seen in other people’s posts here. In my case, the discussions about continuing Anastrozole beyond 5 years were at my annual check ups with the breast surgeon. I haven’t seen my oncologist since I was ‘signed off’ after radiotherapy, 6 and a half years ago. My breast surgeon consulted the oncologist though and I was copied into letters between them. My GP practice wasn’t involved, just copied in to the letters so that they’d carry on prescribing the Anastrozole for me. And in terms of stopping, I’ve simply not requested a repeat prescription. That’s it! 
But it may well vary from area to area. And some GPs seem to be more involved than others. I feel like it’s been very separate for me. Xxx

I’ve only seen my breast surgeon when I went to get a lump checked.  No annual reviews.   Hope your side effects improve now you are off anastrozole.  Do you think uveitis was caused by anastrozole? 

I think I’ve been lucky Gardinia 

in that I’ve had an appointment with a breast surgeon about a month after each annual mammogram. Physical examination which has been very reassuring as well as a discussion of any issues. I was asked post lockdown if I’d be happy with a telephone consultation instead but I said I wanted face to face. And since then it was always face to face. I’m signed off now though, as from autumn 2024. It’s a bit scary, a bit like being cast adrift! But obviously I feel lucky to be so far so good.

Re the cause of the uveitis…. I’m still waiting for results of all the blood tests but when I went to the eye clinic again recently with a swollen eyelid (infection apparently so now on antibiotic eye drops - it’s endless!) the doctor said my inflammation marker test was very high. Could be a sign of lots of different things, I’m not really dwelling on it as too many possibilities some of which are not nice to contemplate. So I’m kind of parking it for now. Waiting for an appointment to come through with another doctor who is apparently Mr Uveitis specialist. 
And yes my thoughts are that it could possibly have been caused/ triggered by the Anastrozole. But it’s possible they’ll conclude that they just don’t know. The fact that I’ve now stopped taking it is sort of reassuring in that regard in that, if it was a factor, I’m off it now. And I’d still want to have taken it as I want to do all I can to try to reduce my risk of recurrence. Xxx