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Neuroendocrine Tumor - no treatment plan method
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?
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@hopeful33250 thanks so much for checking in. I haven’t had any follow up since the summer but I will have a repeat colonoscopy in 2 weeks. And my chromogranin a test has recently been normal. So I’m hoping everything is ok but as you can imagine I have a lot of anxiety heading into this colonoscopy.
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2 Reactions@meleve
I can understand the anxiety. It's good that the chromogranin level has been normal. I look forward to hearing from you after your colonoscopy.
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1 ReactionThe first time we went to Mayo Clinic we used the on-line request for an appointment. It was not as effective as directly phoning one of the Neuroendocrine Specialist's by name band asking for an appointment. Hope this helps.
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2 ReactionsA referral is not required to get an appointment but we found that a referral helped us get seen better.
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2 ReactionsPNET found last January, had 5cm tumor removed last April along with the body an tail of my pancreases and my spleen. The margin was dirty on the pathology report but nothing showed on my first follow-up CT. fast forward to this past October and NM PET CT showed two small lesions in the Liver no definite foci of moderate or intense DOTATATE uptake seen. In January (2026) on a diffusion weighted MRI multiple (11) new subcentimeter hepatic lesions were found and were most likely small metastases. Had NM PET CT done Feb. 2nd confirmed the lesions found on the weighted MRI were metastases. Treatment plan is to start with Lanreotide shots every four weeks.
Point here is be aggressive with your follow-ups and take nothing for granted because I have been without symptoms since I had surgery.
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6 Reactions@skjones56 Hi and welcome to Mayo Connect. Sorry to hear about the liver metastasis. Are you experiencing any symptoms?
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1 ReactionMorning, no at this time I am symptom free.
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1 Reaction@tomrennie
Morning, no at this time I am symptom free.
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1 Reaction@skjones56 I just saw that you stated no current symptoms in your original comment. My bad for being redundant. Other than the Lanreotide shots, was anything else discussed with your Oncologist about your moving forward treatment plan?
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1 Reaction@skjones56 I have a question for you. What has your experience been since spleen removal. Curious because that’s what the doctor scared me into not getting my net removed with saying I’d be worse off if I had it removed.