1. < Neuroendocrine Tumors (NETs)
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Did anyone else have a long struggle to getting a NETs diagnosis?

Posted by denisehatten66 @denisehatten66, Dec 12, 2025

After being tested for one year at my local hospital gastro department, I was finally sent to the UK MARKEY Cancer Center in Lexington Ky for even more testing to obtain a NET DIAGNOSIS. I wasn't allowed to see the NET Dr because I don't have an actual diagnosis, but I did see the APRN. She did more blood work and I still have high Gastrin and Gga level's. She's ordered cat scan with dye on pancreas and liver plus genetic counseling. I was just wondering if anyone else has struggled at least a year of testing or longer before they were officially diagnosed with Neuroendrocrine cancer? What was the main test that the Drs diagnosed and started treating you, even with no NET discovery?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 22, 2025

@denisehatten66, as well as the link about tests to diagnose NETs that @hopeful33250 recommended, please see this related discussion:
- Diagnosis Frustrated: How you were diagnosed with NETs?https://connect.mayoclinic.org/discussion/diagnosis-frustrated/

You will see that you are not alone and also find some helpful tips from fellow NETs members.

How are you doing? Any update?

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jlsgt | @jlsgt | Dec 23, 2025

NETs can be a tough one to diagnose apparently. I eventually had a PET scan to see the cancer. Then had a CT guided biopsy to get it under a microscope which proved it. This was after having an unknown NETs tumor and hot lymph nodes for several years at least as I previously mentioned.

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jwlevandowski | @jwlevandowski | Jan 16 5:06pm

Did your doctors do a Chromogranin A test to determine if you have high levels? That tipped off my GI to look for and locate my NET in my small intestine during a colonoscopy. I was exhibiting symptoms that made them suspicious. After they did a biopsy and confirmed it was a NET they did a Ga68 DOTATATE PET scan and the doctors were able to see that it had spread throughout the surrounding lymph nodes in the mesentery. That particular PET scan is the gold standard for locating NETs

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nannybb | @nannybb | Jan 18 10:57am
In reply to @hopeful33250 "Hello @denisehatten66 and welcome to the NETs support group on Mayo Connect. So many members of..." + (show)
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Hello @denisehatten66 and welcome to the NETs support group on Mayo Connect. So many members of the NETs group were diagnosed "incidentally." This means our medical team was looking for or testing for something else when the NET was discovered. In my case, I was having an EGD to check for ulcers as well as GERD. In my case, a lesion was found, and a biopsy confirmed the NET.

There are many tests used to diagnose NETs (or follow up on) a NET diagnosis. These tests are included in this article from the Carcinoid Cancer Foundation website. Here is the link. I'd encourage you to review the test lists.
https://www.carcinoid.org/for-patients/diagnosis/diagnosis-and-follow-up-tests/
How are you feeling? Any problems with digestion, weight loss?

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@hopeful33250 I was diagnosed through a bone scan. They first saw a nodule about 5 years ago, then this past year (2025) I had another bone scan done and it was found that the tumor had grown. Mine was still small. Some Dr.s go on to do a biopsy and decide the following steps, others will say it is best to wait. I ended up having surgery. I had no idea something was wrong, other than being more tired and a bit out of breath. The work I do is very physical, so I chalked it up to getting older. It is best to find a doctor who is a Nets specialist.

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nannybb | @nannybb | Jan 18 1:36pm
In reply to @jwlevandowski "Did your doctors do a Chromogranin A test to determine if you have high levels? That..." + (show)
Profile picture for jwlevandowski @jwlevandowski

Did your doctors do a Chromogranin A test to determine if you have high levels? That tipped off my GI to look for and locate my NET in my small intestine during a colonoscopy. I was exhibiting symptoms that made them suspicious. After they did a biopsy and confirmed it was a NET they did a Ga68 DOTATATE PET scan and the doctors were able to see that it had spread throughout the surrounding lymph nodes in the mesentery. That particular PET scan is the gold standard for locating NETs

Jump to this post

@jwlevandowski May I ask what your symptoms were?

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