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

I cannot common in DCIS invasive, so my comments are for IDC itself:

I don't personally know anyone who has cognition or memory issues on an AI, and I don't seem them listed as side effects.

I had severe osteoporosis, as I have written previously, and did 5 years on letrozole. Most people also take a biphosphonate during the AI treatment but I was unable to. I am now on Tymlos.

I would rather deal with some bone loss than cancer. The Breast Cancer Index, at the time I had that test, considered any risk over 4.7% as "high." It is up to your doc and you whether 3% versus 7% is significant.

Another factor might be your ER score. Since your Oncotype was low, I assume your ER% was high.

Is there a strong correlation between high ER% and lower ONCOTYPE? I’ve not heard that before… learn something everyday… such nuance and complexity.

So sorry about your Mom. It’s a brutal experience that I also experienced. Hugs.

I cannot common in DCIS invasive, so my comments are for IDC itself:

I don't personally know anyone who has cognition or memory issues on an AI, and I don't seem them listed as side effects.

I had severe osteoporosis, as I have written previously, and did 5 years on letrozole. Most people also take a biphosphonate during the AI treatment but I was unable to. I am now on Tymlos.

I would rather deal with some bone loss than cancer. The Breast Cancer Index, at the time I had that test, considered any risk over 4.7% as "high." It is up to your doc and you whether 3% versus 7% is significant.

Another factor might be your ER score. Since your Oncotype was low, I assume your ER% was high.

@anjalima that is an assumption on my part (that high ER score would mean lower Oncotype), since the avoidance of chemo would seem to depend on the effectiveness of hormonal treatment. I believe the company told me this as well, but it was a long time ago.

Also, my cancer pathology was not good at all (grade 3, high ki67%, LVI) but my ER was 95% and my Oncotype was low. I reasoned that the only reason my Oncotype was low and recommended against chemo, was my high ER score. But ask your doc!

Wow! That does sound right. I had 98% and 99% ER positive on each of 2 foci… KI 20 and 22, but low ONCOTYPE. I do take AI … now in month 7 but recommended for 5 years… to be evaluated for 7-10. I’m fortunate that I tolerate this well ( for the side effects that I can observe). I will ask that question however and get back if there is any nuance to the concept. 🌸

My concern is how the AI will effect my heart. Letrozole is the prescribed drug but I am waiting to take it until I have a CAC scan next week. Am I the only one worried about cardiac calcification and a potential heart attack? Maybe this is not as great a risk as I have cooked up in my mind? (It would be nice to be wrong about this.) I feel like I have to choose between a BC reoccurrence and a heart attack.

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...."

No, your not the only one. I’m extremely concerned as well since most AI’s list side effects that can damage the heart. My Oncologist looked at me like I was crazy so I took it upon myself to find a cardiologist. I’ve gotten a heart calcium score after some scans for other stuff showed calcium. I’m refusing anything until I get clearance from a cardiologist. I had my appointment last week. He scheduled a chemical stress test & an ultrasound to check the abdominal aorta on 11/28. He said he can’t tell if there is any blockage or arteries that have been blocked until the stress test. After testing we’ll evaluate which meds would be best for my ER/PR+ DCIS depending on the results. I’m passing on radiation after a lumpectomy so I think the AI’s would be beneficial as an added precaution. If your hearts not ok then there’s not much point in treatments that are going to make that worse. Without your heart you’ve got nothing & with my family’s terrible cardiac history I had to be my own advocate………AGAIN! I don’t trust the “here take a pill” & the rest be damned mentality. I also have Osteoporosis so I’m looking into Osteo Strong instead of another pill.

I feel the same as you, I have an operation in a few weeks and they want me to
take radiation and the pill. I told them I am 81 and have osteoporosis and this med.
thins out your bones. So if they can't do radiation because I had lung cancer, I will do nothing and hope for the best. if it does come back I will have it out again.