I am new to this network, and very glad to have found it. We’re completely in shock after receiving our 11 year old son Eli’s diagnosis of synovial sarcoma on July 21. He’s had arm tenderness for years … I don’t even like to think about how long this went untreated. About a year ago, our pediatrician looked at his arm and felt a mass. After an MRI, our musculoskeletal oncology surgeon confidently said this was a benign tunor of the nerve … said he’d not even biopsy it if it were his own son and that removal was simply optional. We left the removal up to our son … and after his baseball season this year in June, he said that it was bothersome enough to warrant removing it. THANK GOD. Pathology took over a month! We got the phone call on July 21 confirming it was a synovial sarcoma. Eli went through CT scans, MRI, and a PET scan … all which showed no metastasis. His surgeon went back in to remove larger margins last Wednesday and ALL of the tissue removed was free of cancer cells. We are soooo beyond grateful that things have been mostly as positive as possible, but at the same time, we’d like second (and third, fourth, etc) opinions from physicians who specialize in synovial sarcomas! I see a lot of Dana Farber, Sloan Kettering. How about Mayo? I have a friend who recommended Ohio State. And I read about a few very involved physicians out of the Univ of Utah. Any suggestions on top centers would be helpful!! I see such a range of treatments reported on here that I want to make sure that we’ve done enough! So far, there’s no recommendation for radiation or chemo. And he is planned for scans every 3 months (CT and MRI I believe). One other question I have … these scans are pretty risky especially for kids … why aren’t PET scans protocol? The cost?
While thinking about so much in the past week, I also have worried so much about what possibly could have caused this cancer … our doctors say it’s random, but I question everything. I’m sure it’s normal to have these feelings. Look forward to the network of support on these worries.
Thanks so much for any and all help you can give us. The last week of our life has been a roller coaster I’d never thought I’d be on. You all have our prayers, as I read that everyone is going through their own unique battles. So glad that this area is getting deserved attention, and it looks like some very positive things happening in the clinical trials arena.