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Neuroendocrine tumor: What tests are used for diagnosis?

Neuroendocrine Tumors (NETs) | Last Active: Feb 17, 2023 | Replies (37)
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@monkey5333

Yes I am actually not at a clinic but a hospital. They have done a CT, ULTRASOUND and my surgeon saw something on the CT that made him suspicious in my bowel. He is doing an colonoscopy and endoscopy but doesn’t think he can reach the tumor. He wants to do the scan to identify that it is a NET and any other anomalies that may exist. My pancreas was also shriveled. I came in because of a pain crisis. Any info you can share would be greatly appreciated. The pain was in my abdomen extending around to where my right kidney is located and it was excruciating.

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Replies to "Yes I am actually not at a clinic but a hospital. They have done a CT,..."
Teresa, Volunteer Mentor | @hopeful33250 | Jan 30, 2023

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?

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