Monday, November 12, 2007

Mo' Info-mation, pleez

Just when you thought you had a diagnosis... (11/12/07)

Over the weekend we were thrown for a (possibly hopefully promising maybe please?) loop when our second opinion pathologist reported back, saying this could actually be a form of embryonal rhabdomyosarcoma, instead of a carcinosarcoma. Did you hear that? It might be an embryonal rhabdomyosarcoma!!

Well, don't all jump up and down at once...

It turns out, even though it's a longer set of words and kind of sounds more ominous, this could actually be a good sign. Maybe.

The original pathology did list rhabdo as a possibility, but the end diagnosis leaned toward confirming carcinosarcoma, which was the pre-op diagnosis. Carcinosarcoma, as we have discussed previously, is a rare crazy cancer that no one seems to have any idea how to deal with. The medical oncologists were basically making a chemo plan that would hopefully treat both components of the cancer, but in reality it was a best guess (or rather, two different best guesses).

Now, rhabdomyosarcoma is a cancer that typically is found in young children, and though it's still nasty nasty, there's actually some data on it. For example, I spoke with a pediatric oncologist this morning who was able to ascribe categorizations to the disease, like stages and groups, as well as risk levels - these terms were things that no one has really talked about before with carcinosarcoma. When we asked for the prognosis from my medical oncologist for carcinosarcoma, she basically said she could try and come up with some rate of recurrence, but that it would be pretty meaningless.

In any case, from what the pediatric onc doc said, I would fit into stage III (tumor > 5cm; mine was around 5.4cm I think), group II (all visible tumor removed, only microscopic cells remaining) of rhabdomyosarcoma. Assuming I'm still in that state at this point (there was no spread in the CT scan 2 days before surgery, so unless something else has shown up in the past month, I should be clear), the prognosis is good and I'm in the low risk category...

But I'm not celebrating quite yet. . . we will get final results from the extra tests/stains they're doing on the tissue samples tomorrow. Most likely I'll still be going in for chemo on Thursday, but the regimen will depend on the pathologists' consensus on the diagnosis. Hopefully they'll agree on something by then or we may have to postpone a few days.

Bottom line: For stuff like this, always get a second opinion.

Keep yer fingers crossed!


mollysadventures said...

this might be good news....I would say always get a second, and third and fourth opinion!!!

Alex - read that book Patient from Hell!!

My thoughts are with you....


Anonymous said...

I'm no pathologist, but I sure am hoping it's rhabdo. Keeping my fingers crossed for you!!!


Mike Ying said...

fingers crossed alex!