Synovial Sarcoma - Online Support Group

It came back in my brain stem , am I the only one?


Hey guys just updating. I initially had SS of head and neck for about 5 years and was in remission for 1 year after chemo, radiation and surgery. They still consider it primary because it’s close to the old tumor. I start chemo soon. My tumor is about 1 cm and it’s been very tough and scary but I’m still fine and my doctor says there is still hope since its only 1 cm and the high dose chemo should do it. I’m also doing proton radiation but I find out more on that next week. My doctor also says it’s a good sign that in 6 years it hasn’t spread to the lower body. I a, 25 years old and for the most part am handling well and keeping busy. It still sucks tho! Just thought I’d update.


Sorry to hear about the recurrence :-(

Are they only going to do chemo and proton radiation? No surgery?


So sorry you're having to go through this again.


Since I've been though my clinical trail I get brain scans every couple of months. Having had this for 24 years, I think they are surprised that it has not traveled past the natural barrier that exists between the brain and the rest of the body. Please keep us informed of your treatment options as I know one day I may have to face it as well. Go aggressive as possible has always been my motto. My thoughts are with you and sending as much good mojo your way as possible to kick its ass!



Sorry to hear about it coming back. It does sound like there are some positive aspects to it,i.e. not spreading else where.Hang in there and please keep us updated.


Thank you for the updates. It's been quite a while since I've checked the website. :)