Aromatase Inhibitors: Did you decide to go on them or not?

Thanks for the link and your comment. I stopped anastrozole after one morning last week when I had trouble getting out of bed and walking. Joint aches are a known side effect but this was scary. The joint stiffness did largely go away in a day or two. I called the onco's office. Was told to stop the med until I see him in mid-March. I also am having trouble being constantly hungry. I was told it was weight-neutral but not so in my case.
Sorry if I'm repeating myself: I also have high anxiety, depression, and trouble sleeping. My body seems to take time to rid itself of the AI. Cognitive decline/memory loss is indeed hard to assess. I don't know whether what I have is normal aging or not. I will check out the link you provided. Thanks.

I started to write back to you, and somehow must have erased the reply in the process of finding online references. I believe there are some therapies for bone loss [Fosamax?} but none for cognitive decline. I will say that there are various 'camps' online...some saying no effect on cognitive ability and some saying the opposite, especially from 12 to 18 months after starting AI.. I've tried to concentrate on .edu and other well-known, reliable sources.
I don't know how cognitive decline is measured, and I don't know if I'd notice it myself, either in others or myself. Some studies have put forth the idea that the stress of the diagnosis may contribute. There's a catch-22!. I'm still up in the air and I need to discuss this further with my dr. It's not my purpose to persuade or dissuade you; I'm just interested in hearing various points of view. Thanks for sharing yours.

Here's another reference to memory loss from https://acsjournals.onlinelibrary.wiley.com/doi/pdfdirect/10.1002/cncr.29393:

"...Twelve to 18 Months After Anastrozole Initiation
However, from 12 to 18 months, the anastrozole-alone
group again exhibited a decline in working memory and a
trend toward a deterioration in concentration...."

Ditto on these books.

@crazydaisy I also did not take anything. I had stage 0 dcis with clear margins. I did 20 rounds of radiation with a lot of side effects that they said were not usual. I have had enough of the side effect thing. I agree with the quality of life argument. If I had a different type of breast cancer or an advanced stage I would probably consider it, but I have a good friend who is 17 years out, did not take anything, and is cancer free. I have another friend who is 6 years out with no cancer, so I am going to hope for the best and move on. I have already decided that if I get cancer again I will have a mastectomy so with that plan in mind I can move on.

I have been on anastrozole for a month now and have little side effects if any. My problem is that i am already in full osteoporosis and the anastrozole is only going to make that worse. My dr first suggested taking tamoxifen but that makes me nervous because of all the possible problems-stroke, blood clot, uterine cancer, etc. I also have a major problem in my mouth with my teeth that need treating but I can't be on osteoporosis drugs while doing dental treatments. Ugh! What to do?!

I had a really productive conversation with my MO today. I explained my concerns about my current side effects and any potential future side effects, and he confirmed that they are all risks, but manageable. We talked about the possibility of switching to Tamoxifen to see if my side effects improve, and he agreed it would fine (although slightly less effective) and better than not taking anything at all. We talked about my recurrence rate, which he doesn't know exactly (my conditions were so favorable that we agreed the oncotype was unnecessary), but it's going to be single digits since my conditions were so favorable. That being said, I feel like a dummy because I had thought recurrence rate referred to the chance that I would get another breast cancer like I just had. I had incorrectly assumed that if I get cancer again it would be treated like this one, so the extra 5% protection against recurrence didn't seem that significant. When I learned that it was extra protection against metastatic disease, I changed my tune very quickly. Knowing this, I will stay on the medication and just hope that Tamoxifen works for me. Even though 10% sounds low, it's not low enough for me to feel good about my odds. I don't know how it will turn out, but I am hopeful at the prospects of feeling better about myself and my life.

@songsparrow you raise a really really good point. Ther is recurrence locally, regionally, and then there is metastasis. I think the term "recurrence" is very misleading and am going to start using "spread."

Sounds like you have a very accommodating doctor and hope tamoxifen is easier for you!

I had a really productive conversation with my MO today. I explained my concerns about my current side effects and any potential future side effects, and he confirmed that they are all risks, but manageable. We talked about the possibility of switching to Tamoxifen to see if my side effects improve, and he agreed it would fine (although slightly less effective) and better than not taking anything at all. We talked about my recurrence rate, which he doesn't know exactly (my conditions were so favorable that we agreed the oncotype was unnecessary), but it's going to be single digits since my conditions were so favorable. That being said, I feel like a dummy because I had thought recurrence rate referred to the chance that I would get another breast cancer like I just had. I had incorrectly assumed that if I get cancer again it would be treated like this one, so the extra 5% protection against recurrence didn't seem that significant. When I learned that it was extra protection against metastatic disease, I changed my tune very quickly. Knowing this, I will stay on the medication and just hope that Tamoxifen works for me. Even though 10% sounds low, it's not low enough for me to feel good about my odds. I don't know how it will turn out, but I am hopeful at the prospects of feeling better about myself and my life.