Hi, Rachel,
I had not heard of this. I recently discovered I had a sarcoma tumor, a gastrointestinal stromal tumor (soft tissue) attached to my stomach. It had been there so many years (15? 20?--it's possible) growing extremely slowly. I was treated at MD Anderson for it, and have a great prognosis as it was extremely unaggressive. It is totally unrelated to oral cancer, although it might have been a factor in my body's immunity.

Sarcomas are rare anyway. My tumor, known as GIST, is the most common of the stromal tumors, but still only 5,000 people in the US are diagnosed with it per year. There are so many sarcoma type tumors that a lot of them are even rarer indeed.
Apparently you have one of those.

I did a search also, and was not able to find much. Kerri did not say so but I'm thinking she means Dr Lewis at MD Anderson, as that is the only physician that popped up with a paper on fibrosarcoma, not necessarily oral. I found an old reference to researchers at the Dental School in Adelaide, but nothing current.

My advice to you is to try to communicate with the experts. Because your type of cancer is so rare, I think you'll find they will respond. This was the specific link to Dr Lewis:
http://faculty.mdanderson.org/Valerae_Lewis/Default.asp?SNID=0

Here is her article: http://sarcomahelp.org/fibrosarcoma.html
It mentions head and neck fibrosarcomas--even rarer.

I know something about diagnosing sarcomas--that is not an easy thing to do & I imagine yours was even more difficult, which makes me think your medical care is competent, though they may not know a lot about fibrosarcomas. Does your doctor know of an expert in Australia?

(Keri, I don't know if you found additional information for Rachel or not)

Hope this helps!
Anne