Connect
Getting a diagnosis
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?
Like
Helpful
HugInterested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
Connect
Sounds very frustrating. I found the CT scan was a turning point in my diagnosis. Good luck and take care!
That really does sound frustrating! I can't imagine having to undergo tests for a year and then get referred for more testing. For me, I was diagnosed accidentally via CT (was looking for a kidney stone), and confirmed by MRI and EUS/FNA. I also was confirmed to have the MEN1 genetic problem that resulted in the pancreatic NET tumors (5). I was diagnosed in July and had a total pancreatectomy in November (some of the delay was due to me going to a different surgeon out of state.)
I have had to learn to advocate more for myself with the medical facilities and push things to keep it moving. I hope you get some answers and can move forward with a treatment plan.
- Matt
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.
-
Like -
Helpful -
Hug
1 ReactionMy 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.
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/
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?