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

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.

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.

Hmm, well I would probably be concerned about a 0.3 mm margin too. Though can that even be that precisely? I hope you get a second opinion with an oncologist. It might be that rescreening and/or 'touch-up' surgery is appropriate. If so, I'd consider a different breast surgeon, and who specializes in oncology. I don't know if surgeons react to a patient's desire to have as little removed as possible or what, but I wanted, pun apologies in advance, a margin of safety. That doesn't mean that the surgeon didn't "get everything" by any means but a second opinion could give you some extra confidence either way. Maybe a vacuum-assisred wide needle biopsy can be a good indicator of whether further surgery is called for?

Yes but what prompted the scans? My oncologist does no testing of blood. I went in once with hip pain but it was arthritis. I am just not sure how any metastasis to bones would be caught for the large number of us in daily pain anyway!

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.

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.

Thanks for that explanation. No Reclast . I refused Zometa

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

@pbnew and @eku how was your MBC in bones diagnosed? I am on Tymlos for osteoporosis and my bones hurt all the time. I have asked my oncologist how a person with osteoarthritis or other reasons for bone pain other than MBC, can possibly tell they need to be evaluated for metastasis.

One other point. The term "genetic testing" often refers to testing for BRCA and other genetic factors in causing cancer, as opposed to the genomic testing (also referred to genetic testing of tumors) like Oncotype or Mammaprint, that test the genetic make-up of individual tumors. It can be confusing.

That explains your meds and the fact that you have had no surgery. I hope side effects are tolerable for you. Are you also on Reclast?