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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.

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vcupi1970 | @vcupi1970 | 2 days ago

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.

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Lori, Volunteer Mentor | @loribmt | 1 day ago
In reply to @vcupi1970 "Yes, it’s a recent diagnosis and I’m coming to Mayo Clinic Thursday for some testing. I..." + (show)
Profile picture for vcupi1970 @vcupi1970

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.

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@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?

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vcupi1970 | @vcupi1970 | 1 day ago
In reply to @loribmt "@vcupi1970 I’m so glad to hear you’re heading to Mayo Clinic for testing. You’ll be in..." + (show)
Profile picture for Lori, Volunteer Mentor @loribmt

@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?

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@lorib

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vcupi1970 | @vcupi1970 | 1 day ago
In reply to @loribmt "@vcupi1970 I’m so glad to hear you’re heading to Mayo Clinic for testing. You’ll be in..." + (show)
Profile picture for Lori, Volunteer Mentor @loribmt

@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?

Jump to this post

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

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