Did anyone else have a long struggle to getting a NETs diagnosis?

@jwlevandowski May I ask what your symptoms were?

@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.

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

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.

@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?

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?

I went years with a diagnosis of AVMs (abnormal blood vessels) of the small intestine. It wasn't until I had constrictions and unable to eat normally that the hunt got serious. A 2019 CT scan showed a tumor that was missed. That scan was reviewed in Fall of '22. Finally diagnosed with Neuroendocrine Cancer in Spring of '23. A CT guided biopsy finally confirmed the diagnosis. This can be a very elusive cancer! Good luck.

I was also diagnosed accidentally when I had a CT scan for a possible hernia. The radiologist called it stage 4 metastatic cancer, which was a devastating revelation. Fortunately, I was sent to a surgeon who called the tumors NET's right off the scan. I've had numerous MRI's, blood tests, a PET scan and a biopsy, all confirming his diagnosis. The oncologist says it won't kill me, and I've started Octreotide injections to control them. It was just good luck that we had a surgeon who specializes in NET's right here at MSU.

It took 6 months for Drs to find my SI NET. Finally diagnosed after a CT/PET scan of small bowel showed a small bowel obstruction. Had surgery 2 weeks later & it had already spread to lymph nodes.

How high is your Gastrin mine was 2,000 I had pet scan to find all tumors and primary. Primary is pancreatic and too many to count in the liver I have functioning gastrinomas. Hopefully you have pet scan with dotatate to confirm everything. What kind of symptoms are you having?