Anyone have a child with DFSP? Have you radiated?

BrendansMom Member Posts: 4
edited March 2014 in Sarcoma #1
My 9 year old son had a nickle sized bump on the top of his foot for only about 2 months when we had it removed (took me that long to get him an appointment). They determined it was dfsp, and admitted him 3 days later to do a wide local resection. They removed the skin and tissue on the entire top of his foot, from the bottom of his ankle to the top of his toes, and all the way deep down to the muscle and tendons. He had a wound vac on for 5 days, and then they did a skin graft off this thigh. Surgeon was confident that he got it all.

We went yesterday for our first quarterly re-check with his Oncologist at Childrens Healthcare of Atlanta's AFLAC Cancer Center. Chest ct scan was clear, and his MRI looked good, Dr said. He had originally told us after the surgery, that all the margins looked clear, but then told us yesterday that he may have 'missed' a report that shows the depth margin was not totally clear. They went all the way down to his tendons, so they really had no other way to go any deeper. As it is, my poor kiddo now has a severly indented foot, where the very thin skin graft did not fill in all the tissue they removed from the top of his foot. Dr is suggesting we meet with the pediatric radiology Oncologist to discuss our options. Has anyone else done radiation with much success? My thought is, why do radiation before we even know for sure that has re-occured? I know all about the high reoccurance rates, but I feel like it's a double edged sword here. If we do radiation now, the dfsp may not come back, BUT he may develop another kind of sarcoma years from now. A more serious sarcoma possibly. If we don't do it, the dfsp may come back, and then we may have to do radiation then, or possibly another surgery. Oncologist seems to think they can't go any deeper though, and the next step would be amputation. We want to try EVERYTHING possible before we get to that point! I feel like we should just watch it, and continue scans and mri's every 4 months, and if it returns, THEN we can look at radiating.

We talked about the Gleevac pill, and Dr didnt seem too confident in it. He said some dfsp's will become resistant to it, and he would need to take the pill the rest of his life. He is only 9 years old, I could handle him taking a pill the rest of his life if it keeps this cancer away! Also, who knows what kind of advancements in medicine they will discover over the next 50, 60 years?

How is everyone else doing that has had surgery? We are 4 months out, and healing fairly well....Brendan was able to wear his first pair of Nikes when school started last month :)