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GNET Sarcoma-Gastrointestinal Neuroectodermal Tumors

Sarcoma | Last Active: 1 day ago | Replies (34)

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I hope you are doing well. My 17 year old daughter was also diagnosed with GNET after a surgical excision of a tumor in her small bowel. Her follow up PET scan was clean. We are doing MRI/CT scans every three months with her first scan in about two weeks. She was only diagnosed about three months ago. What treatment options have you been given?

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Replies to "I hope you are doing well. My 17 year old daughter was also diagnosed with GNET..."

We are also doing CT scans every three months, and very similar timeline as yours. No treatment options were given other than the CT scan and observation for now, since it does not seem like there is a proven benefit of any chemotherapy, immunotherapy, or radiation after surgical excision.