Rachel,
By all means hear out what your current team has to say, but let me say sarcoma is a different animal from carcinoma--oral cancer. They do not react the same, are not staged the same, and do not necessarily respond to the same treatments. I would definitely want someone well acquainted with sarcoma on my case. I would also want to know exactly why they think fibrosarcoma. There are certain markers that sarcomas have, and different sarcomas exhibit different markers, so I would assume that would be it. They may well be correct, but just saying that it is a difficult diagnosis. Fifteen years ago, GIST tumor was frequently misdiagnosed, and remember while uncommon, it is way more common than yours.

By virtue of my GIST tumor, I am into the sarcoma center at MDA, although my surgical oncologist there is a gastroenterologist and sarcoma surgeon, and would not do a surgery like yours of course.

You know, it is amazing how many of these physicians will respond to you if you contact them. I had it happen more than once. With your sarcoma being so rare, I would think it would be worthwhile to try. The phone number given is I'm sure the Sarcoma Dept. number. One time I found an email on a paper on the internet and used it to contact the doctor about my GIST tumor before I was fully diagnosed (just suspicion from GI doctor locally). I got a helpful reply in 24 hours.

Best,
Anne

Last edited by AnneO; 02-05-2012 04:33 PM. Reason: spelling

SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of Fall, 2021