[JonInMiddleGA]

Sooooo, we had the follow-up / post-surgical visit with my wife's doctor today. More good (? tough word to use honestly) news than bad, or at least several pieces of definitely-NOT-absolute-worst case news.

It got pretty technical and science-y at times, so I'll give you my best explanation of it. Her tumor was NOT the absolute worst type of sarcoma.

It's a less-common and somewhat better prognosis that they shorthand as "mixed" or "mixed cell" (I think she used the latter term). Basically out of the dozens or more specific sarcoma types, her tumor was made up of cells of several different types. So it's not a "Name-Hyphen-Name Sarcoma",it's just "mixed". Which beats having some of the Named types for sure.

A lot of the other stuff was several layers past my understanding, though my wife spoke the lingo fluently enough that she even managed to stump the doctor with one question (something about mitochondria), admitting that she didn't see the answer in any of the reports.

Here's the upshot of all this: ain't no type sarcoma "good" to have, but it's not the purely worst one at least. The rate of recurrence is still around 50-50 or more, the mortality rate varies -- depending on where it returns & how quick its caught -- in the 40% - 60% within three to five years. But there's also patients who live long enough - 10 to 20 years - to die from some other unrelated cause.

How rare is this shit? It's the only case like hers to go through Emory so far this year. The head surgeon we're dealing with said she's never seen more than 2 cases a year in her whole career. And THAT is where this gets tricky.

Because it's so rare, there's very little data and nothing approaching a definitive study. The "to chemo or not chemo" question revolves entirely around "we recommend it only because it's an aggressive cancer and chemo works on other aggressive cancers so our best guess is ...". but we're told flat out that she has no data indicating whether it works on this type of sarcoma much less any way to compare odds with vs without. She could start chemo & have another tumor appear before finishing a round, she could never touch the stuff and never have another tumor period. Or vice versa .... and nobody would know what difference the chemo actually made in any scenario.

Doc is open to as much input from other docs/hospitals as we can gather, will sit with us and sort it out. (Sloane-Kettering is apparently the closest thing to any kind of experts on sarcomas and they are willing to review her records for a small fee and an online request).

"If you decide you want to try chemo,I'll help you make that happen. If you decide you want to only do surveillance (i.e. frequent cat scans), I'll help you make that happen. It's up to you and I'll help you get what you say done"

Doctor brought a tear to my eye with that little speech honestly, and I told the doctor "you said help ... and that's big ...because that's what we need".

So, 2-3 weeks before any more decisions will be made about anything. In the meantime, she's feeling relatively okay physically, recovering from the surgery and a bit of post-surgical infection, and was at least in an improved enough state of mind on the way home to mention that she might take advantage of a local store having a BOGO lipstick offer "since I might actually live long enough to use it after all"

For now, gang, that'll do.