My son was diagnosed with Epithilioid Sarcoma and had surgery in February to remove a tumor in his back. His very first scans after three months showed that it had metastasized to his lungs. I have been searching for any information I can get on his specific type of sarcoma. His doctors said his is a very rare type and that chemotherapy doesn’t typically work on his type. He just started his second round of chemo this week, and will have scans again in three weeks. If they haven’t shrunk, they are going to stop chemo and the next step is a clinical trial. His diagnosis is Epithelioid
hemangioendothelioma and is the proximal type.