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Neuroendocrine tumor: What tests are used for diagnosis?
Neuroendocrine Tumors (NETs) | Last Active: Feb 17, 2023 | Replies (37)Comment receiving replies
Yes, there is a diagnostic test you can and should have. It's a PT CT Dototate skull to thigh scan. With this test the radiologist will inject you with a small amount of Gallium 68 Dototate. It is designed specifically to identify Carcinoid tumors that are not visible on a CT or MRI.
I went through 11 years of no definitive diagnosis until I had a blockage in 2018 in my small intestine, and they found "thousands" of carcinoid tumors that had never shown up on multiple CTs, an endoscopy, several colonoscopies. In 2020 I had the PT CT at Mayo in Phoenix and it clearly showed multiple tumors spread throughout my body.
I returned in April 2021 and went through PRRT. I'm now stable and doing well.
Replies to "Yes, there is a diagnostic test you can and should have. It's a PT CT Dototate..."
Yes, the PT CT scan is the best. The only issue is sometimes insurance companies may not be willing to cover multiple tests. Mine only allowed one and trying to get another PT scan approved may require divine intervention lol.
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Hi my mom has NET in her uterus that also mastiszed to lungs. I am sitting next to her bed right now at Orlando health and she saw a hematologist oncologist that recommended chemo. They put a port and chemo later today. I’m so scared because we came in because of pain not knowing
G she had cancer and here we are 15 days later about o get chemo. Do you think we should have had PRRT instead?? I tried to plead with my sister to transfer mom to Mayo Clinic but she felt she trusted these drs. I’m so worried. Did you have chemo?