I have one tidbit to share, but it isn't a savoury little morsel.
Today I was wondering how the heck a slow-growing LMS got so huge in L5 all of a sudden, so I logged onto the Duke Health Portal and started reading back through my recent CT Scan Reports. (It is pretty cool that I have access to all my reports online.)
Anyway, I knew that the tumor was first mentioned in an MRI report from October 2010 as a tiny spot. There was no need to go back that far in the history to start looking, so instead I focused on the two reports from this year.
In the February 2012 report, there was no mention of L5. In the January 2012 report, there is a note that L5 is "stable." Hmmm. I was about to scroll back to like November 2011 when Dr Reidel called.
(What perfect timing. He is just awesome. I really feel lucky that he is my oncologist.)
Anyway, he had been doing the same exact thing. But he talked directly to the radiologist who prepared the reports and who clarified that although the tumor at L5 was not mentioned in the February report, it was there, and it was "stable."
So, it was stable and tiny in January and February -- and it fricking blew up to eat my L5 by April?! How could that be?
"I thought leiomysarcoma was slow growing," I protested.
Not true, he said. If a tumor is "high grade" then it can be very aggressive. And (finally we get to the unpalatable tidbit) the tumor that they found after my hysterectomy was high grade.
Then it all came back to me. I remembered my first oncologist running through a list of perhaps 5 different measures of seriousness, drawing me a diagram, and explaining that the tumor they found scored pretty badly on every single measure. Definitely high grade. I guess I knew that but had forgotten it or suppressed it.
Grrrrrr. But I guess I ought to be pleased that the tumors have all been lazy till recently.
Okay, painkillers have kicked in, and I am ready to go to sleep.