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

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.]

I don't know if this helps but my breast cancer surgeon told me the aim is 1.5-2mm of negative margins. I personally would have preferred wider margins and deal with the cosmetics later if necessary. But my post-op biopsy showed clean margins of 1.5mm and two oncologists were happy with it. So your 0.3m looks even better. [I'm phobic about too-narrow margins after a friend's new husband died from skin cancer and M.D. Anderson concluded the original surgeon from a different facility removed a few millimeters too little. So I totally get your question.]

Do you mind telling what they were wrong about?

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.

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?

@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.

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

Thanks for that explanation. No Reclast . I refused Zometa

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.

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.