So, you are saying that a Pet scan showed cancer in the nodes in the axilla, but these are inoperable? And you have cancer in the supraclavicle nodes too.
And the ASCO explanation of Stage IV:
Chrys - I'm really worried because my friend did the same thing, went off the estrogen treatments with a recurrence because the Tamoxifen "wasn't working". Maybe it was working.
I strongly like the suggestion of the Herceptin/Perjeta combination to start. I strongly dislike omitting any treatment for ER positive characteristic of your recurrence tumor - due to your former experience with the increase in the ER characteristic of your tumor during your initial treatment.
I am skeptical about the about the "microscopic" cancer throughout your whole body. This is speculation. Currently, on the information you have shared, you seem to be a stage IIIC. Perhaps there is something that I am missing?
Because your oncologist is in the mindset that you are Stage IV, she has chosen a goal of "Stable". Traditionally that was the best outcome for decades. We Her2 ladies have been blessed with Herceptin, Perjeta and TDM1, along with Taxanes, Carboplatin and many other options.
I've been on this board a long time, and I've seen ladies with liver mets, brain mets, and bone mets reach the coveted NED.
You have evidence of regional mets, and a good chance of eradicating them.
Frankly, I just want to be stuck with your craziness on this board for many decades to come. I'm truly sorry you are going through this.