Connect
← Return to Neuroendocrine tumor: What tests are used for diagnosis?
Discussion
Neuroendocrine tumor: What tests are used for diagnosis?
Neuroendocrine Tumors (NETs) | Last Active: Feb 17, 2023 | Replies (37)Comment receiving replies
Hi again @monkey5333
I'm glad that you posted again with some more information. I'm so sorry to hear of the pain you are experiencing. This sounds difficult, to say the least.
As I mentioned in my earlier post, the 68Ga DOTATATE Positron Emission Tomography (PET) is the best scan to find NETs/carcinoids. You might ask your doctor where this scan is available and see if you can have this scan done.
In regard to the pain and problems you are experiencing, there is little to do but wait for the results of the colonoscopy and endoscopy and see if a biopsy can be done. Please note that there are other tests that can reveal the possibility of NETs. There are blood tests, like one that tests the Serotonin level, also a 24-hour-urine test. Here is some information on the other tests that point to the presence of NETs.
--Diagnosis and Follow-up tests
https://www.carcinoid.org/for-patients/diagnosis/diagnosis-and-follow-up-tests/
I look forward to hearing from you again. Is there a date for the colonoscopy or the endoscopy?
Replies to "Hi again @monkey5333 I'm glad that you posted again with some more information. I'm so sorry..."
Connect
Thank you for contacting me again. My pain is being controlled by medication and I have had the endoscopy/colonoscopy with another CT scan scheduled for tomorrow morning. I have had the 24 urine test. Ironically a lot of years ago after routine blood tests my doctor said that I had unomally high levels of serotonin which I believed was a good thing but he said it could come back to bite me in the future and it has.