Forum Discussion

LibbyA's avatar
LibbyA
Member
5 years ago

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?
anastrozole
side-effects
  • kmakm's avatar
    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
  • LibbyA's avatar
    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.
  • kezmusc's avatar
    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. 
  • Sister's avatar
    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.