← Return to Long Time Survivor With Concerns re Metastasis

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@gneiss50

Thank you, @hopeful33250, for the sound advice. I will be seeing my regular doctor this month, and will talk with him about follow-up testing. I have not had the carcinoid blood work in 10 years because I stopped seeing the one oncologist in the state who had any familiarity with the disease. My state has no doctors listed as specialists in this disease. I have regular check-ups with my gastro doctor for colonoscopies, which have always been clean because the tumors were above the tested area, but he sees no need to do the tests unless I have symptoms, but is open to doing whatever I think is needed.He has communicated with Mayo about my early diagnosis and treatment. He admits that he has seen only one other carcinoid case in his practice history, and knows very little about it. Some days I think I am worrying needlessly, and other days I know I don't want to find that those little demon cells have been growing undetected. My first step is to talk to my doctor and maybe my gastro doc.

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Replies to "Thank you, @hopeful33250, for the sound advice. I will be seeing my regular doctor this month,..."

I'm glad to hear that you will request a follow-up, @gneiss50. If you go to the CCF website, they have good suggestions for follow-up tests. NETs are small little cells, and they are slow growing so it's a good idea to keep on top of them.
Here is a link to some information that you can share with your GI doctor:
--Diagnosis and Follow-Up Tests
https://www.carcinoid.org/for-patients/diagnosis/diagnosis-and-follow-up-tests/
Will you post again with any questions about the tests needed? Also, will you post an update when you visit with your doctor?