GNET Sarcoma-Gastrointestinal Neuroectodermal Tumors

@loribmt
Yes it is and yes I did set my patient portal up. Minnesota

@lorib

@vcupi1970 I’m so glad to hear you’re heading to Mayo Clinic for testing. You’ll be in great hands there.
Is this your first time at Mayo? Have you set up your patient portal? That will be your lifeline for a communication with your Doctor and team, along with updates for appointments and test results.
Which campus will you be visiting?

My diagnosis came after I had been hospitalized multiple times with small bowel strictures that was presumed to be Crohn’s. Biopsy for Crohn’s was done in November of last year came back negative apparently did not get enough of that tissue to diagnose my cancer. Surgery was done March 6, 2026 to remove that stricture. Took three weeks to get the biopsy back and I never thought anything of it.with this rare form of cancer not for sure if chemo is even an option but they did remove that part of the small bowel but I don’t think we have clean margins. Pathology showed possible lymphatic invasion not a good sign. I’m trying to stay positive but it’s hard.

@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

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

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.

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?

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.

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.