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.

Turkey, Volunteer Mentor | @tomrennie | 7 hours ago

In reply to @ceefer "@skjones56 I have a question for you. What has your experience been since spleen removal. Curious..." + (show)

@ceefer Hi and welcome to Mayo Connect. Where is your net?

ceefer | @ceefer | 6 hours ago

In reply to @tomrennie "@ceefer Hi and welcome to Mayo Connect. Where is your net?" + (show)

@tomrennie oh sorry. It’s in my pancreas. Near the spleen, I apologize.

Mike | @dadcue | 5 hours ago

In reply to @hopeful33250 "@dadcue With a "possible diagnosis of NET," it would certainly be wise to follow up, Mike...." + (show)

@hopeful33250

I have reviewed the CT-scan report which says ...

"Short segment wall thickening at distal ileal small bowel loop. With nearby ileocolic mass (3.8 cm) and adjacent enlarged lymph node, please correlate for neuroendocrine tumor."
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This annual CT-scan was done last Feb 2025 and was monitoring my kidney stones. Nobody said anything about a mass last year. The CT-scan without any contrast wasn't looking specifically for a neuroendocrine tumor but now they are going to look more closely. I'm wondering if it is possible or not based on this incidental finding.

I still don't think I want to get too worked up about this. I still like the idea of "no treatment." Any thoughts?

Along with some labs and a GI consult ... I'm supposed to do a capsule endoscopy.

skjones56 | @skjones56 | 3 hours ago

In reply to @ceefer "@skjones56 I have a question for you. What has your experience been since spleen removal. Curious..." + (show)

@ceefer
Thank God I have not had any problems so far. In the beginning I wore a mask out in public but now I only wear one when I am in crowded areas or if there is a flu warning.

skjones56 | @skjones56 | 3 hours ago

In reply to @tomrennie "@skjones56 I just saw that you stated no current symptoms in your original comment. My bad..." + (show)

@tomrennie
Meeting with the Oncologist tomorrow for the first time to work out my treatment plan. At that time I hope to get an idea on where this treatment is leading to. I also have a upcoming appt at MD Anderson to get their opinion and see about any trials that would be good for me.

ceefer | @ceefer | 2 hours ago

In reply to @skjones56 "@ceefer Thank God I have not had any problems so far. In the beginning I wore..." + (show)

@skjones56 thank you. I have requested a second opinion from a different surgeon so hopefully I’ll get more information soon.

| @hopeseeker22 | 57 minutes ago

In reply to @ceefer "@skjones56 I have a question for you. What has your experience been since spleen removal. Curious..." + (show)

@ceefer
What?
So doctor did not want your spleen removed, right?
Who wanted it removed, please?
My daughter’s was removed about 6-7 months ago. Doctors determined it was killing her platelets. They were right & she better off w/o it for THAT reason. She’s not complained of any symptoms from the removal.