GNET Sarcoma-Gastrointestinal Neuroectodermal Tumors

Posted by ksnozal @ksnozal, Jan 19, 2024

Hello fellow Mayo patients,
I am looking for other patients with the diagnosis of a very rare and aggressive Sarcoma called: GNET-Gastrointestinal Neuroectodermal Tumors. I'd like to connect with other patients with the disease to be a support to one another and share helpful information. Is anyone out there with this disease or know of someone who has it? I look forward to connecting. Thanks, Kris

Interested in more discussions like this? Go to the Sarcoma Support Group.

yas1 | @yas1 | Jun 10 12:06pm

In reply to @mijomi "My daughter was diagnosed with GNET 4 years ago. She is a survivor and shows no..." + (show)

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

bschwall | @bschwall | Jul 15 12:38pm

@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.

mijomi | @mijomi | Jul 19 2:28pm

In reply to @yas1 "What treatment, if any has your daughter done? My daughter has recently been diagnosed with GNET..." + (show)

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.

hopefulmj | @hopefulmj | Aug 22 12:54am

Hi, I was recently diagnosed with GNET after a surgical excision, and wanted to connect with @ksnozal, @videvale, and @mijomi. I can’t seem to send private messages - but would love to hear your experiences.

hopefulmj | @hopefulmj | Aug 24 5:20am

@yas1 @bschwall
Would love to connect as well.

yas1 | @yas1 | Aug 24 12:13pm

In reply to @hopefulmj "@yas1 @bschwall Would love to connect as well." + (show)

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?

hopefulmj | @hopefulmj | Aug 27 7:50pm

In reply to @yas1 "I hope you are doing well. My 17 year old daughter was also diagnosed with GNET..." + (show)

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.