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

Posted by denisehatten66 @denisehatten66, Dec 12 12:28am

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.

matt2024 | @matt2024 | Dec 12 8:08am

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