Neuroendocrine tumor: What tests are used for diagnosis?

Hi there,

I am sorry you are having such troubles locating your pain. I am not familiar with adrenal gland thickening. Where are you located? If possible, have you tried to obtain an appointment at Mayo? They are very thorough and spend as much time as you need when it comes to your questions. I am a great listener if you need someone to talk to.
Warmest Regards,
Sherry

Yes, there is a diagnostic test you can and should have. It's a PT CT Dototate skull to thigh scan. With this test the radiologist will inject you with a small amount of Gallium 68 Dototate. It is designed specifically to identify Carcinoid tumors that are not visible on a CT or MRI.
I went through 11 years of no definitive diagnosis until I had a blockage in 2018 in my small intestine, and they found "thousands" of carcinoid tumors that had never shown up on multiple CTs, an endoscopy, several colonoscopies. In 2020 I had the PT CT at Mayo in Phoenix and it clearly showed multiple tumors spread throughout my body.
I returned in April 2021 and went through PRRT. I'm now stable and doing well.

It's possible you could have a Pheochromocytoma tumor. I would ask for a 24 hour urine catecho amines test to be performed. I am diagnosed with a extra adrenal Pheochromocytoma or Paraganglioma Cancer and the catechoamines test was how City of Hope nailed down the problem.

Sorry, I misspelled something. It's 24 hour urine catecholamines. They can also do plasma catecholamines which can be useful as well. Another test I do is 24 hour urine metanephrine.

When you say very high? What was your test result. My first Chromogranin A test result was 786.0 and a month later it was 2480.2. I have had CT’s, full body nuclear bone can, multiple upper endoscopy for pancreas, stomach and intestines. All clear, so far. I have my first appointment with an oncologist in two weeks and plan to ask for the gallium tests to see what they show. All this came about from pain due to my pancreas divisum. Hope for some sort of resolution after the gallium test.

I get tested for Chromogranin every 4 weeks. My last result was around 1000. It had been as high as 1800 but then I had some debulking surgery done on the liver 9/6/22 so that brought it down I think. You mentioned rapid heart rate and facial flushing which are classic signs of Pheochromocytoma/Paraganglioma disease. How is your blood pressure? Do you have headaches?

There are several questions on our site referring to the ChrimograninA blood test and what it means when the numbers RISE or FALL on the test (normal less than 95). Will someone please explain how to interpret without the doctor-ese? Thanks!

Hi @kellywally, I wanted to tag you on this discussion you started to ensure you saw all the helpful posts that you received from fellow NETs support group members @dbamos1945 @gsm13161 @kathyalbert501 @phyllisden and @skkirby.

Kelly, how are you doing? Have you had additional testing done by a NETs specialist?

I am going through the same process. At first they thought I had POTS, but my Cardiologist recognized it as Neuroendocrine tumor R/o GIST. I just started all my blood work. My Gastrin level was 125 which is high. Just did the 24 hour urine test, tomorrow is CT and next week Gastroenterologist. I hear it is very difficult to diagnose and to make mine worse I am also dealing with CLL (chronic lymphatic leukemia) and HNPP (Hereditary Nerve Pressure Palsy). Very frustrating. I tried to make an appointment with Mayo Clinic and they would not take my insurance or even let me pay out of pocket. So, I'm dealing with multiple doctors in Las Vegas and hopefully they will come together to help with the diagnosis! Not having a team working together is very frustrating! Will keep you informed. I'm very persistent. If I wasn't no one would have diagnosed the HNPP, it took until I was 50 to get that diagnosis. It started giving me sever pain when I started PE in High School and the pain has continued to worsen. The biggest problem is that doctor's have never heard of this neurological disorder and Neuroendocrine tumors are also not seen very often and very difficult to diagnose. Don't give up! Keep insisting and change doctors when needed. Good Luck to everyone who is dealing with this.

Hoping all is going well. Wondering if you are still in pain or if you have found some relief. Stay encouraged and know that you have a HUGE support network of friend at your fingertips.

Warmest Regards,
Sherry