1. < Neuroendocrine Tumors (NETs)
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Neuroendocrine Tumor - no treatment plan method

Posted by meleve @meleve, Apr 30, 2025

Newly diagnosed with à neuroendocrine tumor Gr1 K167 under 1%. Was removed during a colonoscopy as it presented as a polyp, but the pathology report showed à Neuroendocrine tumour Gr1. It was small 4mm x 6mm and was into the mucosa/submucosal layer. The pathology report didn’t say benign however the Cancer team says they don’t consider this cancer, which conflicts everything I’ve read and researched. The oncologist also said they won’t be doing any further resection or follow up on the tumour even thought my chromogranin a levels are flagged as elevated and I’m still having symptoms. The CT scan didn’t show any evidence of anything else but the oncologist also won’t send for further testing despite having symptoms. Thoughts on no further testing or treatment plans? Or them saying it’s not a cancer?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

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siluka | @siluka | Feb 27 2:53pm
In reply to @michellehcapouch "I had two intestinal resections due to a bowl block. This is how my gpNET was..." + (show)
Profile picture for michellehcapouch @michellehcapouch

I had two intestinal resections due to a bowl block. This is how my gpNET was discovered. Then I had PET scan they found a meningioma brain tumor that was also in my right optic nerve. So thankful for pet scans finding other things wrong. Saved my eyesight. Finding things to me is a blessing because I can treat them, remove them. Ovarian NET found removed.. just so many examples I embrace bad news because it gives me control to address.

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@michellehcapouch i agree at least you and everyone else know they have nets or any other cancers and getting treatment others are walking around not knowing what is inside them.

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brewmano | @brewmano | Mar 11 12:26am

Im sorry for your frustration. They removed what they assumed was a nodule was a neuroendocrine tumor. So much before this diagnosis. I'm having carcinoid syndrome and other symptoms as they claim they removed it all. Just know that symptoms are because there are neuroendocrine cells elsewhere. They have never put me on any medication. I am on my 3rd opinion and 2nd multidisciplinary oncology center. If you are having the facial flushing (carcinoid syndrome) it has metastasis to another organ. They don't know enough and are more concerned about missing a diagnosis or a misdiagnosed lawsuit. Stay strong..they are more worried about what they didn't do than what they could have tried. Im a female and one doctor prescribed me prostate medicine. Ask questions. Find the patient advocates within your area. 🙏

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