Thoughts on stopping Anastrozole after 10 years.

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Hello everyone,

I was diagnosed and treated in 2015, and next year I will be stopping my anastrozole. 

As much as I am interested to see how I feel without them I do feel like they are a safety net. When I spoke to my oncologist she said some people request to stay on anastrozole past the 10 years, and even though there is little evidence of benefit they allow them too.

I don’t think I want to keep on taking them but I am interested to know how have people have felt when they have stopped both physically and emotionally.

Thanks!

Karen. 

  • Yes the yoghurt type drink, you can buy it in Aldi now for half the price with the same ingredient called something like cholesterol drink.  Plant stanols, same amount in both drinks.

  • Thanks for everyones replies. I do wonder how I will feel when I stop taking it, hard to know what is caused by the drugs and what is just old age!

    I will discuss with my team on my annual follow-up. My Onc is heavily involved with BC research and clinical trials so is quite forward thinking.

    I'll update you if he says anything interesting!

    Stay positive out there!

    xxx

    JediKnight

  • Hi Karen,

    It's great that you're considering how stopping anastrozole might impact you both physically and emotionally. After long-term use, it's natural to feel a mix of curiosity and concern about the change.

    Physically, some people report a return to baseline hormone levels, which can lead to the resurgence of symptoms that were previously managed by the medication. This might include changes in bone density or joint pain. On the emotional side, the adjustment period can vary. Some people feel a sense of relief and improved mood, while others may experience anxiety or uncertainty about their health.

    It's important to communicate openly with your oncologist about any concerns or symptoms you experience after stopping the medication. They can help you monitor your health and address any issues that arise.

    Lastly, always ensure that any medications or supplements you decide to take are from reliable sources. The quality and safety of your medications are crucial, so stick to trusted pharmacies to avoid potential risks.

    Best of luck with your transition, and take care!

    1. Hi I have now completed 10 years of Anastrozole ( started in 2014) and am feeling equally nervous about stopping. I’ve read that protection continues even when you are no longer taking  the tablets and would really like to find out how I feel without Anastrozole. It’s sometimes hard to tell whether joint pain etc is just down to being older! I’ve just requested an appointment with my oncology department ( I haven’t seen them for 5 years) so will be interested to see what their thoughts are. It’s really useful to hear other people’s experiences about this and that I’m not alone in feeling a bit nervous about the next step. 
  • Hi Jane55 firstly well done for managing to stay on medication for the 10 years Clapit’s a big achievement. I know some ask to remain on it post 10 years if you are tolerating it and gives you peace of mind. It would be good to hear your oncology response as there appears to be conflicting thoughts. Personally I don’t think anyone really knows as we all respond differently.

    also how did you cope I’ve had to come off anastrozole and letrozole and now started tamoxifen due to severe bone ache and insomnia stopping me working. Just had discussions with GP who said I need to make my work fit to my side effects not the other way round so coming to terms with this and not coping very well with it xx thinking of asking to see Macmillan councillor Buppy

  • Hi there,  I had stage 3 breast cancer in 2012.  I had lumpectomy, chemo, radio therapy and then tamoxifen, anastrozole for five years.  The oncologist prescribed this for ten years but I stopped after five due to the side effects.  I wish I had carried on as last year was diagnosed with secondary breast cancer.  I don't know whether it would of kept the cancer from coming back or not.  I guess I will never know.  I wish everyone well in their own journey.

    Lee x

  • Hi Lee I’m so sorry to hear that. As you say we will never really know. I had a lumpectomy and radiotherapy for a stage 2 tumour but declined chemotherapy so will never be sure that was the right choice. I think we just do what feels right at the time, and I promised myself that I would never beat myself up about that decision. I wish you well too.

    Jane

    • Hi Buppy I’m so sorry to hear that you are having problems with the medication - there are so many difficult choices to make.I think I have been quite lucky as the side effects weren’t too debilitating for me. After a few years my Dexa scan showed osteopenia so I am rather dreading the next one. I think the fear of bone loss is the main reason I would prefer to stop at 10 years if I can bring myself to. I will be interested to see if I sleep better too - it’s so hard to know what to put down to Anastrozole or is it just the stress of life!! Hope it helps to speak to a counsellor and I’ll definitely let you know what oncology say - not that I have heard back from them yet! Take care Jane

  • Hi. I just wondered if you had managed to to get an appointment with the oncology department and if so what they said about you continuing Anastrozole. I have been on for 10 years but came off 2 years ago but now getting nervous about my cancer returning so am considering asking about the possibility of further Anastrozole. 

  • Hi Katsy

    I haven’t heard anything back from oncology yet - thanks for reminding me to chase them up! In the meantime I spoke to my GP and decided to stop taking Anastrozole. I have read quite a bit about the protection lasting for years after you stop taking it. It was such a difficult decision though - and definitely a bit scary now my comfort blanket has been removed. Good luck with your decision - do let me know what you decide and I’ll let you know when I finally speak to oncology. I don’t know about you but most days I’m ok and then it only takes something in the news or online to bring back my fear of recurrence. 
    my main reason for stopping was the fear of bone health deterioration as I age. I also need to arrange another DEXA scan to see how things are now!