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Mez_BCNA's avatar
Mez_BCNA
Community Manager
3 years ago

Bilateral breast cancer and hormone blockers

Original post created by member @Jenn_Sim1, moved by moderator to a new discussion in 'Tests, treatments and side effects' category:

  • @Locksley please get it checked out. I was the same. I could barely hold a glass in my hands. I didn’t need surgery in the end, I just changed AI, wore wrist braces for 6 weeks and it went away 🙌🏻♥️.
  • @FLClover thankyou for the reminder about carpal tunnel syndrome.    That could be what I'm currently experiencing.    I'm having a lot of pain.  Trying to dress myself, wipe my butt, type on my phone.  Might be the next thing I have to look at.  Not happy Jan.  

  • Hello. I also had bilateral breast cancer in 2020. I had a double mastectomy and bilateral radiation. I’ve been on Zoladex and an AI for 2 years. I started off on Letrozole but it gave me carpal tunnel syndrome, so I switched to Exemestane after 3 months. Then again after about 3 months I switched to Arimidex, and been on it since. Carpal tunnel syndrome has mostly gone, and I have fewer aches. Hot flushes aren’t too bad either, except in summer. Check with your onc if they can try another AI maybe before you stop them for good. 
  • Dear @Jenn_Sim1

    Your oncologist should be able to confirm (roughly) what the added benefits are for hormone blockers in your specific case. The problem of course is that Letrozole can increase bone thinning and the risk of osteoporosis. If you already have osteoporosis after two years, the possible benefits may not outweigh the risks of other problems. The stats for hormone blocker benefits unfortunately do not indicate which group you fall into - the smaller group who will derive great benefit or the larger one who may not. On the other hand, your osteoporosis is discernible and trackable. If your oncologist’s view is to stop Letrozole,  it’s worth serious consideration. You have tried your very best, but it may be time to make a decision, make it on the best knowledge available to you and then accept that decision, with no regrets. I am in my tenth year of Letrozole, no osteoporosis yet but a significant decline on my excellent bone density when I started (aged 67). I can live with that. But if the decline had been faster, or my starting point worse, I would have limited my Letrozole treatment and my oncologist would have agreed. Very best wishes.