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Long Time Survivor With Concerns re Metastasis
Neuroendocrine Tumors (NETs) | Last Active: Oct 5, 2023 | Replies (38)Comment receiving replies
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?
Replies to "I'm glad to hear that you will request a follow-up, @gneiss50. If you go to the..."
I want to report in on my current situation. My GP referred me to a local hematologist, who ordered both urine and blood tests (from referral to first appointment was two months.) Both showed abnormally high levels of the carcinoid markers, so she ordered a doctotate (sp?) scan. I had it a week ago, and have an appointment with the hematologist next week. Unless the scan shows no growth at all, I will try to get an appointment with Mayo Jacksonville, since that is who made my original diagnosis and provided treatment. Coincidentally, my brother has been undergoing octreotide (I think) treatment for carcinoid tumors in his liver. After more than a year of monthly injections, he says the latest scan showed that the tumors have disappeared. I certainly hope so. He says that he will take the injections the rest of his life.
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Thank you for the information and support. I will look at these sites and take the information to my doctor when I see him in two weeks. I will post about my plans and testing.