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How can test be so different?
Hi, I hope all are feeling well.
For the past yr I have been undergoing many tests. 24 hr Urine positive in small bowel, Gallium PET-neg, CT enterography- positive, gallium PET- neg,. Lanreotide 1st inj, worked well. Took symptoms away. My symptoms came raging back as it was time to get another. 2nd inj. Working well.
I have an appt with surgeon who will undoubtedly won't operate. I don't feel confident and feel I'm at the start again.
How can the test be so different?
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Please make sure you’re seeing a NET specialist!
Thanks for your comment. I currently see a surgeon that specializes in GI cancer such as NETS. I'm not sure what else to do....
Hello. My husband was diagnosed last year with grade 1, stage 4, small bowel NET. He has been stable since then on once a month Lanreotide shots with no immeidate plans for surgery. Many NET patients continue with this monthly shot for many years with a good quality of life. Of course you have to discuss your specific situation with one or more (always good to get a second opinion) NET specialists. Below are two great resources that were helpful for us and discuss how to find specialists, among other things.
https://netrf.org/for-patients/
https://www.carcinoid.org/for-patients/diagnosis/newly-diagnosed-the-basics/