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

@callalloo DCIS is non-invasive/pre-invasive so did you also have invasive cancer? What do you mean by "I had DCIS invasive?"

I think it is reasonable to avoid meds with DCIS but that reluctance should not necessarily be relevant for those who actually have invasive cancer.

The Oncotype Dx is also used for those with 1-3 lymph nodes so not just stage 0 or 1.

Reduction from a risk of 8 to 4% is significant.

I took letrozole for 5 years with very few side effects, and none of my friends had side effects from AI's, other than bone loss of course, which can be addressed.

I just want to put a positive word in for these medications. I miss being on it because I felt protected. Forums tend to be negative and then everyone is too scared to take meds. Try them!

The other drug they offered was arimidex. I had cancer in both breasts. Two different types of aggressive cancer with lymph node involvement. Took tamoxifen for 9 months and I had enough. Refused arimudex and I’m cancer free still. This was back in 2002.

I took Tamoxifen for 9 months and the side effects were awful. I was supposed to take another drug but did not. Had a double mastectomy in 2002. So far cancer free thank the Lord.

I know, right? If they can argue that AIs reduce recurrence by 50% (rounded off) then just double the risk number by 2 to get the risk if AIs aren't taken. I had an oncology radiologist tell me that radiation could reduce a risk "from 10% to 2%, which is an 8% reduction." I pointed out that she was confusing percent with percentage point and that a reduction of 10 to 2 was actually 80%.

And I wondered how bad her arithmetic actually is and then double-checked the study she quoted and she was flat out incorrect. I worried about the women whom she might talk into radiation by fallaciously tossing out junk stats. And the radiologist was wrong about the study she was citing too.

So I had a discussion with her superior, citing the exact same study correctly, and noting that she needed to get this right as people have the right to hope their physicians are advising them based on defensible, verifiable facts. It's hard enough having breast cancer as it is. Sheez.

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.

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.]

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

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

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

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.