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stopping letrozole

I just came from the oncologist and after looking at my BCI and having been on letrozole for six years he told me to stop. I am terrified to do that. Has anyone stopped after 6 years? He said new research says 5 years is enough and now I'm just getting the side effects, not any real prevention of cancer from continuing to take it. What would everyone do?

Comments

  • moderators
    moderators Posts: 7,886

    @mudd , sorry you find yourself in a situation that isn't very comfortable. We understand there is a security of being on the letrozole. There are a number of studies where they say between 5-10 years. ( https://www.breastcancer.org/treatment/hormonal-therapy/femara

    Perhaps you'd consider getting a second opinion before stopping?

  • kaynotrealname
    kaynotrealname Member Posts: 366

    I'd get a second opinion since you're not comfortable but if the second opinion agrees, then I'd stop, too. Maybe there is something else they could offer instead?

  • mandy23
    mandy23 Member Posts: 103

    Hi @mudd -

    This is really a tough thing for patients and MOs to decide. The studies seem to vary so much over the years. I think the bottom line is it's kind of like the chemo question. It depends on you and the make-up of your tumor. Since you have had the BCI, I think lately that has become the common decision maker. If you google BCI, you can read about it, if you haven't already. If you want some more confusion to add to the mix, here's a relatively recent article, that I don't think offers a definitive answer either:

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10453164/

    My 1st BC dx, I stayed on Femara (Letrozole) for 8 years. After a really bad break (required surgery) on my arm, I decided I was done. At the time I went on it, AIs were not really approved for early stage BC, but my MO put me on it anyway and there was even less information about how long to stay on it.

    With my current dx, I am about to finish my 1st year on Letrozole. My MO says under current guidelines, it is likely I will be done at 5 years. For me, this seems to be related to it being Grade 3. I guess with Grade 3, it is more likely to recur (if it's going to) in the 1st 5 years. It also seems like the studies show for Grade 3 no difference if it does recur later whether or not one takes it longer. So, one could take it, but it won't help and there is the trade-off of the risk to bone damage.

    When I get to 5 years, like you, I will be questioning and researching. We all just want to do all we can to not let the beast come back!

    Good luck with your decision!

  • herb
    herb Member Posts: 56

    What did your bci report say? Do you have any bone loss? I stopped at 5 years my bci said no added improvement from another 5 years. And I had developed osteopeninia