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?

I think that there are many who have stopped and are fine because the blockers are only insurance against recurrence and that is where it becomes difficult for most of us. You may be completely cancer-free and it never recur and so taking the meds is pointless. You may have cancer cells readying themselves, take the meds and they don't stop recurrence. Or you may be one of that group in the middle for whom the meds prevent or drastically slow the cancer cells activity. At present, as far as I'm aware, there is no test to show which group you are in, just a statistical likelihood. You really need to make the call that is right for you because you're the one who has to live with the outcome. Whatever you choose, it must be without regret (or at least with the knowledge that it was YOUR best choice). Best wishes.

Not weird, maybe it's just a different perspective. As is often observed here, we all bring our own individual luggage into our BC diagnoses. And that shapes our response in many ways.I know someone who absolutely cannot tolerate the hormone blockers at all, so she stopped them. So far so good for her and she is much happier and feels far more well.Best of luck, K xox

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 meBest wishes

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.

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.

Hormone blockers | Online Network

Sister
Member
5 years ago
I think that there are many who have stopped and are fine because the blockers are only insurance against recurrence and that is where it becomes difficult for most of us. You may be completely cancer-free and it never recur and so taking the meds is pointless. You may have cancer cells readying themselves, take the meds and they don't stop recurrence. Or you may be one of that group in the middle for whom the meds prevent or drastically slow the cancer cells activity. At present, as far as I'm aware, there is no test to show which group you are in, just a statistical likelihood. You really need to make the call that is right for you because you're the one who has to live with the outcome. Whatever you choose, it must be without regret (or at least with the knowledge that it was YOUR best choice). Best wishes.
kezmusc
Member
5 years ago
Ditto to what @Sister said. They always say "the benefits should outweigh the risk". Does not appear they do in your circumstances for 2%. Another drug may suit you better...or not. All the best lovely. Trust your instincts.
LibbyA
Member
5 years ago
Thank you both of you. I just had my appt with the oncologist and he doesn’t think Anastrozole causes reflux, although lots of people do. But, he did say to stay off for a month again and see how I go. One thing he said was that if I get too worried about the cancer returning, to call and he would see me sooner. That hit a spot with me, because I have honestly never been concerned about the cancer. Right from the start, after the diagnosis, before the second surgery because it was in one node, rads, nothing. It was just another diagnosis to add to the many I have. There was absolutely no fear. If anything, I was glad it is a condition that probably wouldn’t cause me as much trouble as my other things. At least if I had a reaction out, I could blame that and nobody would think I was stupid. My mast cell condition is much more trouble. Maybe I’m just weird.
kmakm
Member
5 years ago
Not weird, maybe it's just a different perspective. As is often observed here, we all bring our own individual luggage into our BC diagnoses. And that shapes our response in many ways.

I know someone who absolutely cannot tolerate the hormone blockers at all, so she stopped them. So far so good for her and she is much happier and feels far more well.

Best of luck, K xox
iserbrown
Member
5 years ago
You certainly sound like there's a lot going on before your breast cancer diagnosis.
Hopefully a break from meds will prove beneficial.
Have you read up on hormone therapy? This link has a link to the booklet

https://www.bcna.org.au/metastatic-breast-cancer/treatment/hormone-therapy/

Take care
iserbrown
Member
5 years ago
and perhaps this webcast may help

https://www.bcna.org.au/news/2019/06/webcast-hormone-blocking-therapy-is-it-worth-it/
CarmelH
Member
5 years ago
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..
Afraser
Member
5 years ago
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.
Sister
Member
5 years ago
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.
iserbrown
Member
5 years ago
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