Letrozole
Hi, I have been taking letrozole for 1.5 years and have decided to stop. I had stage 1 invasive ductal carcinoma. Treatment involved partial mastectomy, 20 treatments of radiation and letrozole 10 mg daily for 5 years. The hot flashes, insomnia and fatigue is really affecting my quality of life. I’m curious how many of you stopped taking the estrogen blocker, or opted not to take them, and what your experience was. How long ago did you stop taking them? Did you experience a recurrence of cancer? Did you try a different estrogen blocker that had less side effects? If so, which one?
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I was originally diagnosed with stage 3, grade 2 invasive ductal carcinoma in fall 2018. I had chemo, a mastectomy, and radiation throughout 2019. Then I started taking Letrozole in January of 2020. I had a rough time with side effects, read a lot of stuff, and found a small academic study that showed people doing as well taking the 10 mg every other day, as those who took it every day. Knowing full well that it was risky, I chose to do the every other day regimen and didn't tell my oncologist for awhile. Not surprisingly, she wasn't pleased, but accepted that that was what I was going to do.
In the fall of 2022 I began having some back pain and I went to the ER for it. at one point. They only thought I was dehydrated at that time. The pain continued to come and go, but got a little worse in January of 2023, so I went back to the ER, where I was diagnosed as being metastatic. Whether it was because I only took Letrozole every other day or not, I will never know. Some never take the AIs and never recur. Some take them diligently as prescribed and recur anyway. Others like me, do their own hybrid sort of thing, and some recur and some don't. There's no way to know a solid reason for a recurrence or non recurrence. I was real close to being stage 4 when originally diagnosed and that may or may not have been a factor. You being originally stage 1, may or may not affect whether you become metastatic. Likewise, whether you take or don't take the Letrozole may or may not matter in your case. There's just no way to know for sure.
That said, I do think the wisest thing to do is what the oncologist recommends, unless you just can't. There are other AIs and some have success in switching to another or even changing brands of the one they're already taking, but for some none of that helps. It's all just so individual and unique. I think I would try several other options before deciding to quit altogether, if I were in your shoes.
I'm really sorry this has happened to you, and that you are faced with this AI challenge. Wishing you all the luck in the world!
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I’m so sorry you have had the cancer return. I hope you had good results with 2nd round of treatment. I appreciate you providing your story and I wish you the best outcome.
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I just hope my experience helps you in trying to decide what to do re Letrozole. Thanks too for your good wishes. I'm still here 3 years after the stage 4 diagnosis, so we'll see. Take care.
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Also, I think there is an old thread for Letrozole. You might want to check via the search function. It would have a lot of comments from other people re side effects and what to do about them.
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