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

Comment receiving replies

@frogjumper I understand your fears of a repeat menopause experience! I took letrozole for 5 years and that was not what happened for me. I had some hot flashes at first, but I pretty much still had them anyway (and still do at 72). I am sensitive to meds and had to take brand name, which solved the problem of fillers.

I just want to mention some misunderstandings about the Oncotype, if only for others reading posts on this forum. The Oncotype is used now not only in addition to pathology but, I guess you could say, instead of. By that I mean, a grade one cancer may have a high Oncotype, and 30% of grade 3's (including mine) have low Oncotypes (and don't benefit from chemo). Some patients with 1-3 positive lymph nodes have an Oncotype that says no chemo.

In other words, the genomic testing of the Oncotype (and other tests like Mammaprint) give information that you cannot get any other way.

I do think that if your ER and PR were highly positive, and HER2- (and ki67% low) you could speculate that you are at low risk (your doc can confirm_, but an Oncotype can confirm that with more assurance.
(We can have one at any time, using surgical pathology specimens.)

I do not just do what docs tell me to do. My case was complicated with a lot of contradictory tests, and I already had severe osteoporosis- not osteopenia. I got 4 opinions. I trust the stats from Oncotype that my risk was cut in half with meds and nothing would stop me from taking them. That was my choice and sure there were side effects (some that eased) and probably health effects, but I wanted to do anything I could to avoid a recurrence and was so grateful to take AI's and not have chemo.

I have done bone meds for 18 months (after finishing letrozole) and my bone density is now better than before the aromatase inhibitor, so that has been addressed.

At the 5 year mark, I did a Breast Cancer Index, another genomic test that tells whether extending hormonal therapy is of benefit, and what our risk is. I got a "no" to more meds. If I had gotten a "yes' I would have done two more years, not five.

I am glad your risk is considered low and wish you and everyone reading this the best in these difficult decisions.

Jump to this post

Replies to "@frogjumper I understand your fears of a repeat menopause experience! I took letrozole for 5 years..."

Agree ... Thanks for posting details of your experience. Very encouraging as I've chosen a similar path for testing and treatment choices.

It's not true that "30% of grade 3 (breast cancers) have low OncotypeDX score." I've asked the OncotypeDX customer support people if this is true as it's been posted several times on Mayo Connect and it's not an accurate.

I wanted to do the BCI test but the docs did the CTS-5 calculator and I came back with a low number 2.55.
So they said since I was stage 1 grade 2 I didn’t need the BCI. I go off anastrozole at the end of my 5 years according to the calculator. Anastrozole has dropped my bone density.
Is anyone else familiar with the CT’s-5 calculator?