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

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. 🌸

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...."

@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!

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 would like to see study also

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.

My oncologist quotes very different percentages. In late May, I had an invasive DCIS lumpectomy with a lymph node removal that was negative. Surgeon says they got it all. My oncologist says if I don't take AI [anastrozole] I have a 7% chance of a recurrence. If I do take it for 5 years, I have a 3% [absolute] chance of a recurrence. This is making me re-think whether I want to risk the long term serious side effects like bone thinning, cognition and memory issues which can show up after 18 months to 2 years. I am going to discuss it with the oncologist in a few weeks during my next appointment.

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.

@anjalima I finished my full course of an AI 🙂

To others, I did 5 years on letrozole and already had severe osteoporosis. My doc did not want me on Reclast or Prolia (long story) so I was unmedicated. I had a dip in bone density when first on letrozole (similar to the drop at menopause) and then the loss was much much gentler. I am now on Tymlos.

I was more afraid of cancer than any side effects, or bone loss. I felt safe on letrozole. I miss it!

I feel the same way as you. I have been taking AI for 2 months following a lumpectomy at the end of May. I opted not to have radiation. My oncotype was 5. I have been having some worrisome side effects from the Arimidex: my knees hurt worse than before and my dry eyes are also worse. The hot flashes are also annoying. I am very concerned about the long term effects on bone density, cognition and memory loss. I have been quoted the same percentages of recurrence as you have---6% if I don't take the AI, and 3% if I do. I am seeing my oncologist next month and will probably quit the AI.