GNET Sarcoma-Gastrointestinal Neuroectodermal Tumors

What treatment, if any has your daughter done? My daughter has recently been diagnosed with GNET tumor in her small bowel.

@ksnozal and @mijomi

I was diagnosed with GNET in January 2023. I would love to connect if possible. I have been looking for anyone with the same diagnosis to share information and experiences with.

Hello,
My daughter has only treated hers through cytoreduction surgeries (bulk tumor removal) with one of them having to do a small resection in her small intestine. Four surgeries total in the last 5 years. Since she has two young sons, she chooses not to do chemo at this point. Hers initially was found in her small bowel and reoccurs in the same area, with this last surgery a tumor grew near her large intestine. Thankfully nothing has metastasized to other organs so far.

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?

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.

Hello, my name is Vickie and I’ve been diagnosed with a rare form of cancer, GNET. Was hoping to be able to reach out to somebody who has Experienced this type of cancer.

Welcome to Connect, Vickie It’s a lonely feeling when you’re first diagnosied with a rare form of cancer and so helpful to be able to speak with others who can relate. There is a discussion in Connect with members who have also been diagnosied or have loved ones with GNET (gastrointestinal neuroectodermal tumors. Please meet @videvale @mijomi in this post from @ksnozal.

-GNET Sarcoma-Gastrointestinal Neuroectodermal Tumors
https://connect.mayoclinic.org/discussion/gnet-sarcoma-gastrointestinal-neuroectodermal-tumors/
Was this a recent diagnosis? What has your oncologist discussed with you regarding treatments?

Yes, it’s a recent diagnosis and I’m coming to Mayo Clinic Thursday for some testing. I meet with the oncologist at 3:25 in the afternoon after some testing is done.

My name is Vickie and I was recently diagnosed with this rare cancer.

@vickie; @ksnozal: My Gastroenterologist performed endoscopies and was able to diagnosis Neuroendocrine carcinoid disease. Primary tumor at duodenum/small intestine (actually this is a pretty common site) was biopsied and led to specific info needed: KI67 stain -1% (well-defined), Grade 1 (slow growing) tumor cells.
Gallium -67 PET scan reveals specific sites of NET cells and their precise locations. They found NET cancer in my liver which revealed metastases from primary location= Stage 4. This info you will gather and preferably consult with Gastro NET specialist Oncologist for guidance on best course of treatment.
Neuroendocrine cancer patient support can be found through Mayo Connect, as well as several other blogs (search NET orgs on internet) through the US as well as internationally. We find strength in each other by helping find and decide on treatments, drugs, coping skills, and every NET side effect endured. You are not alone on this “surprise” detour in life. dbamos1945