I know very little more today than I did last week, but I’m just going to put it out there. Thursday night at 4:55 my doctor from MDACC (Houston) called. She spent a minute or two checking up on me before dropping the bomb. Apparently the pathologists there think I have been misdiagnosed. When they initially ran their tests they came up with some error, so they had to order some more tissue from the hospital where I received my surgery. In their second round of testing, they came up with a myxiod sarcoma, not peritoneal mesothelioma.
No really. What?
Dr. T. did not explain anything to me; she just kept saying it was not her specialty. Dr. S. and Dr. F. were both on vacation. (Though Dr. S. actually called me from his vacation when he heard – to find out what was going on and to ask me to send him my new pathology report to his personal e-mail address. How’s that for amazing?)
So… I am literally back to square one. Mary, the meso nurse, has been in touch with me and she says this is a good thing and I should be celebrating. This morning, though, Dr. F. said it was neither better or worse; it would just require a different treatment regiment. Granted, she has not had the time to study my pathology report. Dr. F. encouraged me to go on my vacation and to enjoy myself and try not to worry. While I am gone, she will be consulting with Dr. S., Dr. T., and whatever new doctor will be taking over my case if it is sarcoma.
I know next to nothing about it, except that it is also rare, which is why it has been to hard to diagnose. I’m torn about whether to just accept this diagnosis or try to get third opinion somewhere. Each diagnosis requires vastly differently treatments, so I would hate to start the treatment for one and it not to work. I’m not even sure where to start if I do decide to go that route.
A little good news, though: my CT Scan came back looking good. There are no large tumors or fluid. There are a couple of spots they are watching, including a hernia and some lymph nodes, but there was nothing detectable to to the human eye, which is wonderful.
So for now, I will take my doctor’s advice and try to relax on my vacation. When I return, I’ll follow their advice as well, whether that means another trip to Houston or simply starting a new treatment here.