Forum Discussion
Hormone blockers
I’m seriously considering stopping my hormone blocker. I’m off it at the moment since Monday and won’t take this one again. I’m talking to oncologist tomorrow, and will discuss maybe a different one. I’ve been taking Anastrozole since May last year. The trouble is I have several preexisting conditions, all made worse by the drug, plus a few new ones. I can cope with pain, tinnitus, anxiety, hot flushes, etc, but my dysautonomia is becoming much worse, and my reflux was so bad I spent Monday in hospital with the doctors thinking I had a heart attack. I already have Barrett’s and risk oesophageal cancer if it is not controlled. I have done everything possible and am taking high strength drugs for it. I had to stop one because it increases prolactin so is contraindicated in hormone positive breast cancer. My dysautonomia has got so bad I can stand only a few seconds without blacking out. The drugs that help make the Barrett’s worse, so not taking them. The oncologist said the blockers give me a 2% extra survival rate over ten years. I’m taking Aerius in the hope it works as well in Qld as Europe to stop recurrence. I really feel by trying to stop the recurrence with blockers I’m highly risking oesophageal cancer, which has a 5% survival rate over five years. It’s not as though I will become well in ten years if I take the blockers. My conditions are mostly genetic. I also have mast cell activation disorder, which means I become anaphylactic to all sorts of things including some of the supplements people take. Does anyone know or is there anyone here who has stopped taking them and is doing well?
15 Replies
- Thanks, arpie. My onc keen on the continuation as extra insurance.
- In the old days (20-30 years ago) it was automatically 10 years (back then there was pretty well only tamoxifen & friend's Mums were on it for 10 years after radical mastectomies - they weren't doing lumpectomies back then either. Just whip it off! I don't think any of them did chemo either!)
I was initially told 5 years by the surgeon - but the onc indicated it would probably be longer. So long as I am tolerating it OK - I guess I'll just continue - to be sure, to be sure (hopefully!) - I think it may depend on your individual circumstances and as others have said whether the possible benefits are worth the impact on your quality of life. I was diagnosed over 7 years ago and was told from the start that hormone blocking for me should be for 10 years. I started on Tamoxifen (2 years), switched to Femara after ovary removal (for 3 years, 3 months) and then changed back to Tamoxifen due to quality of life issues. I have always found my oncologist good to discuss options with. They have the benefit of understanding the research but also knowing you as an individual with unique circumstances.
- My oncologist says the study was convincing - a very large sample and clear outcomes. He usually likes to see research duplicated so I’m prepared to accept it’s sound. But I’d still like to know what difference there may be between say eight years (almost there!) and ten.
- Two years ago my oncologist said five years ago for Letrozole, but three months later she said seven to ten years. It sounds like a study came out that caused the oncologists to revise their timeframes!
- My Onc initially said 5 years but within about 6 months that changed to 10 years and so as I have just passed my 5 year anniversary I sigh and think I am half way..........oh well! The upside is I am still here and feeling much better than I have for a very long time hence the recent change of medication has certainly helped and a very kind and caring Onc looking after me
Best wishes - I am on Letrozole for ILC and my onc has always said 5 years then we'll consider what the research shows but it will probably be at least 10 years unless otherwise indicated. I think it does depend on the type of bc that you had.
- Now that’s interesting - I have been looking for similar research but on Letrozole - none round to date, my oncologist is pretty on the ball re research and didn’t know of any last time I asked. I would love to stop having now done seven years. My recent bone density test results may affect my decision.
- I have been on arimedex for seven years. Have seen recent research findings re benefits of seven years rather than five, but no added gains from going from seven to ten years. Has anyone ceased hormone blocking therapy (anastrozle) after seven years..
- and perhaps this webcast may help
https://www.bcna.org.au/news/2019/06/webcast-hormone-blocking-therapy-is-it-worth-it/
