My 5yr old was diagnosed with a Dnet tumor 2 yrs ago after having a siezure. He has been on many medications since, always changing due to stomach issues, personality changes, not working etc. Last 2 weeks siezures have increased, with an increase in duration of the siezures. They gave another medication, and are now saying it is a cancerous D-Net tumor. His 5 main doctors think surgery is required, but the actual surgeon doesnt. This is at Dupont Childrens Hospital in Wilmington, DE. They tell me no one in the immediate area will do it, and I would have to goto Pittsburgh PA hospital for surgery. They tell me surgery is 50/50, but if the medicine doesnt help, and the siezures get worse, he could go into a coma forever. I am confused by the doctors disagreeing, I went to Childrens Hospital of Philadelphia and they said they wouldnt touch it.
I looked online and everything I could find on D-Net tumors said they are benign.
Any info/suggestions would help.