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

would like feedback from others that have decided to not take AI"s or tamoifen.

@tygerrag2, I moved your question to this existing discussion:
- Aromatase Inhibitors: Did you decide to go on them or not? https://connect.mayoclinic.org/discussion/arimidex/

Tyger, what criteria as well as tumor and personal factors are you considering to make your choice?

I decided to not take aromatase inhibitors. I did have a low 'risk of locoregional recurrence within 9 years" according to the OncotypeDX test my oncologist suggested and we had done. [5% if I take the drug, 3% if I don't IF the OncotypeDX is valid and the oncologists I consulted think it is.]

I'm older and have osteopenia, which I hoping to reverse or keep in check, and the effect of estrogen depletion on the body, cardio system and bones is a concern that got my attention. I was about to write 'only time will tell if I was right' but would be intrue. I'd have a 3% risk IF I took the meds anyway so, if I suffer a recurrence, there's no way to prove it wouldn't have happened if I had taken them. It's a very personal judgment call though.

@callalloo, did you have DCIS? Remind me.

@tygerrag2 it is impossible to comment without knowing your pathology results and/or Oncotype score.

I had an Oncotype of 8 and recurrence risk of 6% with meds. I and several of my friends had very little trouble with aromatase inhibitors.

As for bones, I already had osteoporosis before doing my 5 years on letrozole. Bone density went down the first year and stabilized the last 4, or, rather, returned to the normal post-menopausal rate of loss.

I wanted to go on Reclast during treatment but my doc did not want me to due to occasional afib. That risk has since been discounted.

I actually miss my AI. I felt safer while on it!

I am in a similar situation. My chance of recurrence with AI is 4%. But this bothered me-my oncologist said she couldn’t tell what the percentage would be if I don’t take it, which I find hard to believe. Maybe a second opinion.

If you take the AI, they know what the recurrence is, but without AI, they don't know hmmm Just sayin'

I should have said "I'm not prepared to manage!"

Oh, okay. Makes sense-they’d just be guessing. Thank you.

Your oncologist can't do simple arithmetic, :-)? OK, the breast cancer industry currently assumes that taking aromatase inhibitors 'can' reduce the risk of recurrence for estrogen positive, progesterone positive, HER2 negative by about 45%. They use 50% as it's an easier statistic to quote and "sloganize" and is a bit more conservative. [I don't know about other categories of breast cancer and they all have their own statistics.]

If your OncotypeDX 'risk of recurrence' number is 4%, it's the risk of logoregional recurrence within 9 years if you take aromatase inhibitors. Arithmetic then would assume that you have an 8% chance of recurrence if you don't take AIs, using the 50% risk reduction they apply, if that number is valid. Another way to look at this is that you have a 92% odds against "locoregional recurrence within 9" years by taking AIs and 96% odds against recurrence if you take them. This is the interpretation I got from two different oncologists and talking to Oncotype.

The OncotypeDX is generally used to look at the genetics of early, stage 0 or stage 1 tumors that are estrogen sensitive so this analysis shouldn't be used for other, or more complicated, cancers.

The way I looked at things, in my situation, was to balance the differential in odds of recurrence versus the side effects of anastrozole and a need, then, for osteoporosis drugs if I took AIs and decided that the slight difference in theoretical risk wasn't worth the known side effects and difference in quality of life. [However I did first try anastrozole and had joint pain almost immediately. I repeated the trial with the same result.] Cancer is nasty and we have reason to dislike it intensely but the odds against recurrence, for most breast cancers, are nonetheless greater than the odds for recurrence and I think it's helpful to keep that in perspective too while otherwise doing what we can to become healthier generally.]

I had DCIS invasive, 7mm including clean margins, stage 1A. Clean sentinel lymph node biopsy. Discovered September, 2021, excised October, 2021. Detected by diagnostic mammogram and ultrasound as I'd had a tiny underarm lump, which, oddly enough, went away before the tests and was undetected by them.

I missed a mammogram the previous year because of lockdown and wondered if this could have been caught earlier. Oncologist thinks it might have been...or not as it was small. But I'll never know.