Concerned about the side effects of anastrozole

Thank you. My Oncotype score was also 8, so no chemo. And my risk at 9-10 year recurrence is 10%. My tumors were grade 2 and 3. I don’t know if they will do the Breast Cancer Index test to see if AI will continue or to try to determine risk of late occurrence.
My guess is I won’t continue because my oncologist said I only had a few more months to stick it out. But knowing there is a five year test is new to me. But baby steps! First step, MRI with breast surgeon. That has to be clear first, after which I will reconfirm what all my numbers meant when I see my oncologist and will also ask about this Breast Cancer Index test. I would like to have it done even if his plan is to discontinue the AI.

My doc didn't know about the BCI three years ago but it is now NCCN approved. I had to bring it to my doc and tell them about it 🙂

Yes, I read that! And coincidentally, my surgeon’s office just called to tell me something and I asked about this test and she said hopefully, the doctor who will do my clinical exam before the MRI will know something about it. 🤞🏻

"My Oncotype score was also 8, so no chemo. And my risk at 9-10 year recurrence is 10%.:"

I've seen the results of seversl OncotypeDX tests and I've never seen a result where the risk of recurrence is higher than the Recurrence Score. Are you sure that you're not conflating the Recurrence Score (which is a number) with the Risk of Recurrence, which is followed by the % sign on the report (and assumes one takes anti-hormone therapy)? If you are noting the correct numbers, could this be because two different tumors were tested?

As an example my Recurrence Score was 9 but "risk of loco-regionsl recurrence....9 years" was 3%.

Buy they really should use less similar names for the two results as the majority of customers' calls are about the confusing terminology.

Yes. The recurrence score was 6%, but the oncologist wrote down 10%. The cancer was bilateral and it was everywhere, but very early stage like an explosion (don’t even go there…because I always had my routine screenings…it’s a story ).

But it will all get sorted out at my appointment. But I am curious if they will discuss the Breast Cancer Index test.

I understand that the surgeon might have felt the risk to higher due to extenuating factors, I just want to differentiate between the OncotypeDX Recurrence Score (RS) and the Risk of Recurrence. (ROR). The ROR is the only number alluding to odds, chance or actual calculated "risk" of recurrence.

I sure share your dismay over the discipline of routine screenings and a gobsmack-worthy surprise result!

Again, my doc did not discuss the Breast Cancer Index but that was three years ago. I called the BCI company and got all the paperwork myself. I also worked with the lab to expedite sending tissues and requested a certain block, though that is not necessary. My doc said that going forward she is going to use the BCI. She did not know about it. Perhaps now with NCCN approval, more docs are using it. It is mentioned very frequently on breastcancer.org.

I'm grateful I found this MayoClinic community! I am 52 years old, had bc twice - in 2010 and more recently stage 1 in 2020. My younger sister had it at 33 years and is doing well, no longer in treatment. I was on Tamoxifen in 2010, and now taking Zolodex (to put me into menopause) and now taking Anastrozole since 2020. I'm not sure I can take the side effects any more. I'm meeting with my oncologist next week for my 6 mos. visit. I was told the symptoms after a few months would stabilize. It's almost 2 years, I have osteopenia, but the fatigue, sleep issues and joint pain (wrists, hands, knees) and brain fog are rough. I have two teenage sons who keep me on my toes! I have a hard time working (I am a remote therapist), sitting down after extended time just makes me achy. When I'm up and moving around and don't need to focus - I'm okay. I am going to ask my dr. about my case and recurrence risk. My Dr. and team make it sound like those with side effects are not the norm - but the Infusion nurse (who happens to also be a bc survivor) tells me that all of the bc patients she sees complains of the hormone treatments (AIs) and she had to stop herself, she was so miserable. I guess it's nice to know I'm not alone. I'm tired of explaining myself to my friends, etc. who wonder why I more flaky these days - I simply don't have the energy and feel that great some days. I suppose if you haven't been there, it's hard to imagine because they think I'm done and on the other side. Thanks for listening.

@micheleandrew what helped me was walking (had to be more than 40 minutes, hurt at first) and tai chi. Hope you find a way to continue on the meds!

It must be tough with the induced menopause. Does that create a double whammy of menopause symptoms plus AI side effects? I would think so!

I have been taking Anastrozole 1 mg for 2 months, About a month ago I had a loud pounding in my ear while sleeping and it continued for about an hour after I got up, never had this before. Was this a side effect of the drug? I have not noticed any other usual side effect and the pounding never came back. My dr gave me an echo cardiogram to be sure it was not related to heart..that came out showing normal.