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

CAT scan showed cells on a few bones. Then Full body PET showed hole in C3 vertebrae .
Throughout this journey , about 5 months so far, I’ve had no pain or symptoms.

Thank you for the very good information. I should have proofread my post. The correct number is 0.3mm and not 0.3m.. Even so I have the answer to my question, so thank you.

Yes. I have a theoretical "risk of loco-regional (aka anywhere in the body) breast cancer recurrence within 9 years" of 3% if the OncotypeDX test is valid. (And two oncologists I consulted with believe it is though, as with most medical stuff, there are no guarantees).

The 3% risk assumes that I did not have radiation or chemo and take either tamoxifen or aromatase inhibitors.

My oncologist and the oncology radiologist both insisted that that 3% risk was based on my having radiation and they were both wrong. The OncotypeDX does not lead to any treatment inferences except whether the patient risk/reward profile suggested a benefit from chemo. [A low risk score does not.]

Assuming that adjuvant anti-hormone therapy reduces risk of recurrence by 40-45%, I declined the anti-hormone drugs. That would leave me with an approximate 5% recurrence risk. Or, to put it another way, a 95% chance that the cancer will not recur within 9 years.

I declined radiation as well because, before we received the Oncotype DX result, the radiologist cited the usual stats that breast cancer could recurrence in the exact same site as 10%. And radiation could reduce that to 2% statistically-speaking. But the radiation would only protect that one tiny area, not even the rest of the breast, and no other part if the body. I said "Nope" to radiation after getting the Oncotype genetic testing as I don't have the 10% general statistical risk so the risk/reward payoff for radiation wasn't there. [The major risks, in my opinion, being any radiation in the left breast being nearer the heart and lymphedema. There are other risks but these were the big two for me.

I was first diagnosed as breast cancer. Then they did a whole body scan and that's how they saw the bone metastasis.

Those docs may have assumed you had radiation since most folks who have lumpectomies seem to. In fact, I had mastectomies to avoid radiation. So they were assuming a norm. And confused it with a prerequisite.

Tests like Prosigna Assay and Breast Cancer Index consider a 5% risk to be "high risk." It is hard to know whom to believe. I do know that risk goes up with hormone-driven cancers. Triple negative cases are higher risk at first but if they make it 5 years, they can be reassured (or so I have read). But hormonal cancers continue to rise in risk, unfortunately.

And guess what? Oncotype, Prosigna and Breast Cancer Index all have different results for me! The Oncotype is best for the time of diagnosis, in regard to benefit of chemo. It has changed the course of treatment for so many. a wonderful thing.

These are tough decisions for everyone. Are there any folks in this thread who are taking an aromatase inhibitor as the only form of medical treatment with or without surgery? I’m on Letrozole and Ribociclib. I want todump Rebociclib . I’ve had no surgery.

If I might ask, what triggered their doing a whole body scan? I had a lumpectomy last fall and find myself wondering how non-breast "recurrences" are even found since the mammograms are so site-specific.

Maybe but the doctors should not have assumed that because the Oncotype protocol, literature and even the results page that the doctor and patient receive clearly state otherwise. I'm a fairly diligent researcher when it comes to medical stuff, but someone else might have felt persuaded to have radiation based on a statistic that didn't apply. And Oncotype told me that they continue to hear of doctors who clearly still don't understand the limits of the test, including some that submit biopsy material to determine if surgery is called for. (Yikes.)

The breastcancer.org site was still wrong in its description of the OncotypeDX as of a month ago.

I swear there's no rest for the weary patient just trying to make sense of stuff. And
my permanent goal is to never be eligible for participation in any drug class action, or individual malpractice or negligence, lawsuits, lol.

This drug combination is designed to keep metastatic or advanced estrogen positive cancer in check. Typically surgery is not an option after cancer has spread to other parts of the body, unless it is being used to prevent specific suffering due to the size or location of a tumor.
Why is it that you want to drop the Ribociclib from your treatment? Are you having adverse side effects from this?
@windyshores have you asked your oncologist for a bone scan or a pet scan? I know that it wouldn't be appropriate all the time but if you are having additional pain, it seems warranted. Have you had any unusual fractures?

Good. I was referring to any genetic test but the test I had was the OncotypeDX. The customer service reps are great and, when I had a question they couldn't be absolutely sure about, I was able to talk to someone in the science side of the firm. He answered a question, about which both my o cologist and ontological radiologist were flat out incorrect (sic) and put the answer in writing. I took his email to them and the vreast cancer surgeon because they were, well wrong, and needed to advise patients correctly. [My PCP congratulated me for persistence in double-checking, as did a consulting endocrinologist, and I had the letter entered into my medical file.]