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

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?

There are some great resources out there.
Please check out these websites. This is a journey where you have to teach yourself and advocate for yourself. Most patients do get there dignosis incidentally (while getting a scan for something else) and frequently after years of unresolved symptoms.
Also, please try to seek advise from a NET specialist. This is SO important.
https://netrf.org/for-patients/
https://www.carcinoid.org/

My tumors were found when they did a bone scan for osteoporosis. My doctor had seen a spot on my lung prior, but never mentioned anything. Once it started growing, I was refered to a pulmonary specialist. They ran a battery of tests. I had x-rays, CAT scans, 24 hour urine sample and finally a PET without contrast. It was confirmed it was growing, but they had to do an actual biopsy to conclude how to move forward. They ended up operating.

I agree that you will get good information from CT scan and MRI, but the absolute confirmation for my husband’s diagnosis was a PET-DOTATATE scan.