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.

ceefer | @ceefer | Feb 5 8:58am

In reply to @tomrennie "@ceefer Are any of the doctors/surgeons that you are consulting with NET specialists?" + (show)

@tomrennie no just surgeons

Turkey, Volunteer Mentor | @tomrennie | Feb 5 9:15am

In reply to @ceefer "@tomrennie no just surgeons" + (show)

@ceefer I strongly suggest that you seek the input of a NET specialist. NETs are rare. It helps to have the expertise of specialists. Here is a link to research specialists in your area:
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
Where are you located?

ceefer | @ceefer | Feb 5 9:46am

In reply to @tomrennie "@ceefer I strongly suggest that you seek the input of a NET specialist. NETs are rare...." + (show)

@tomrennie thank you. Southern Illinois

ceefer | @ceefer | Feb 5 9:56am

In reply to @hopeseeker22 "@ceefer What? So doctor did not want your spleen removed, right? Who wanted it removed, please?..." + (show)

@hopeseeker22 hi. The doctor suggested I don’t have the NET removed nor spleen because I have diabetes type 2 and he stated it would make it worse so don’t have the surgery.

Turkey, Volunteer Mentor | @tomrennie | Feb 5 10:11am

In reply to @ceefer "@hopeseeker22 hi. The doctor suggested I don’t have the NET removed nor spleen because I have..." + (show)

@ceefer What if the tumor on the pancreas is contributing to your diabetes? When I was diagnosed with a PNET in 8/22, I had been told that I was diabetic for about five years. My NET oncologist believes that was the first sign of my PNET. This is an example of why a specialist is important.

ceefer | @ceefer | Feb 5 10:43am

In reply to @tomrennie "@ceefer What if the tumor on the pancreas is contributing to your diabetes? When I was..." + (show)

@tomrennie thank you because it has been about that long for me along with the pain and digestive problems a well. Thank you, I see on the list a location I can contact her in Illinois.

Turkey, Volunteer Mentor | @tomrennie | Feb 5 11:11am

In reply to @ceefer "@tomrennie thank you because it has been about that long for me along with the pain..." + (show)

@ceefer Are you unintentionally loosing any weight? What tests/scans resulted in your NET diagnosis?

ceefer | @ceefer | Feb 5 11:45am

In reply to @tomrennie "@ceefer Are you unintentionally loosing any weight? What tests/scans resulted in your NET diagnosis?" + (show)

@tomrennie lost about 30 pounds in a few months, lots of vomiting pain and discomfort and change in bowel movements. Appetite changed can’t hold much down. Thirsty all the time. So my family doctor sent me in for a series of cat scans and finally a few MRI’s.

Turkey, Volunteer Mentor | @tomrennie | Feb 5 12:01pm

In reply to @ceefer "@tomrennie lost about 30 pounds in a few months, lots of vomiting pain and discomfort and..." + (show)

@ceefer Who told you that you had a NET? I just want to know which type of doctor or surgeon told you. What in your test results led the doctor to make that diagnosis? Did any of your scans include contrast? If so, do you know the type of contrast? Sorry for all of the questions, but from a NETs patient perspective, I am a little confused. Thanks.

ceefer | @ceefer | Feb 5 1:48pm

In reply to @tomrennie "@ceefer Who told you that you had a NET? I just want to know which type..." + (show)

@tomrennie yes I had with and without contrast. My family practice doctor ordered the first test. With and without contrast and sent me to see a gastroenterologist, who did another test with Cat scans and MRI, with and without contrast, then referred me to a gastroenterologist surgeon. Who took a biopsy and pet scan. He said it probably warranted resection but said my diabetes would be worse and my quality of life would be worse without my spleen and he’d have to remove it with half my pancreas. Scared