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determination of primary site of NET
Neuroendocrine Tumors (NETs) | Last Active: Feb 13, 2023 | Replies (13)Comment receiving replies
Dear Hopeful,
Thank you so very much for your message! I appreciate the links for the NET specialists and the 68 GA PET scan. That is the test that I believe he needs to have done. I'm so sorry to hear that you have had 3 surgeries for this condition. How were your NETs discovered? Did you have symptoms? How did the doctors know if the tumors found were primary or not? Mike doesn't have any carcinoid syndrome symptoms. He does have several other serious digestive conditions, and we are wondering if they may be connected to undiscovered NETs. Thank you again and I hope you continue to be well!
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Hello @rebecka93
I appreciate your comment and questions. To answer your questions:
No, I never had any symptoms, the NETs were found during a routine upper endoscopy for other digestive issues, which was 20 years ago.
It is felt that these NETs were primary and that the previous surgeries might have left some cells in the area (all the NETs were found in the same location).
My other lab tests (Serotonin blood levels, 24-hour-urine) do not indicate any carcinoid activity and I have no carcinoid syndrome symptoms. I'm nearing age 75 and have chosen not to go through additional testing unless new symptoms or problems appear.
Given your son's age and previous digestive tract problems, I hope that he is able to see a NET specialist. Here is another link to lab tests that are used for diagnosis and follow up which might be helpful to him. This is from the CCF website as well:
--Diagnosis and follow up
https://www.carcinoid.org/for-patients/diagnosis/diagnosis-and-follow-up-tests/
I hope that all goes well for your son. Will you post if you have other questions?