Neuroendocrine Tumor - no treatment plan method

Posted by meleve @meleve, 5 days ago

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.

@hopeful33250

Hello @mimighosh,

I'm glad that you posted an update about your husband's treatment and that you encouraged others to seek a consultation with a NET specialist. It sounds as if the Lanreotide injections have not resulted in a lot of side effects. Has your husband's medical team suggested any other treatments?

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He is on a watch and wait approach right now. There are 3 month scans and blood work, but now that he has been stable for 1 year, they suggest he can do the scans every 4 months.

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