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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?

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maeve115 | @maeve115 | 23 hours ago
In reply to @dadcue "@maeve115 Maybe it mostly depends on who looks at the CT-scan and writes the report. I..." + (show)
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@maeve115

Maybe it mostly depends on who looks at the CT-scan and writes the report. I was getting an annual CT-scan without contrast every year since 2020 to monitor my kidney stones. The CT-scan in 2025 reported a "possible NET" but no confirmation was done until 2026. My first labs showed that my CgA and serotonin levels were elevated. One thing led to another but a Dotatate Scan was said to be "conclusive."

I was referred to a NET surgeon who wanted a CT-scan with contrast because "the measurements" of my primary NET and nearby lymph nodes would be better than on the Dotatate scan. The report on the CT-Scan with contrast reported the following:

CLINICAL HISTORY: SBNET

COMPARISON: 3/25/2025, 2/27/2024, 2/17/2023, 2/16/2022, and
10/16/2020.

No evident CT correlate for reported history. No pathologic by
size abdominal lymph nodes.

------------------------
The NET specialist stepped in and corrected the report.

Date Verified: MAY 11, 2026
3/24/2026: Dotatate PET: RLQ mesenteric masses (3), 1 left perirectal lesion

5/11/26:CTAP: Formal report states no evidence of primary NET or pathologic sized abdominal nodes. This is incorrect. There is 5mm left perirectal node (series 4 120/165); 32mm mesenteric mass (series 4, 78/165) (equivalent to series 1201 image 245/413 in DOTATATE PET 3/24/26) which was 28 mm on series 15 image 77/169 from CT of 2/16/22)
--------------------
It was interesting to me that the NET specialist could see a NET retrospectively on 2/16/22.

The NET surgeon said he could see evidence of as NET on the CT-scan in 2020.

I'm not too upset because the NET specialist confirmed that there was a slow progression. I'm more concerned that every lab that is checked that is indicative of a NET comes back positive. My Cga, serotonin, gastrin, insulin, pancreastatin, 5 HIAA, and PANCREATIC POLYPEPTIDE are all elevated and all labs were rechecked more the once.

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@dadcue
Me too "Maybe it mostly depends on who looks at the CT-scan and writes the report. " For me the CT-scan indicated but local center had not seen or recognized NET before. NET specialist picked it up and a Gallium Dotatate was order to confirm. Gallium- Dotatate test showed that it was not only a NET but it had metastized ..
It is good to read that your NET specialist was able to confirm NET and slow progression.
I am also frustrated that sometimes a CAT does not pick up the NET and then sometimes it isn't just read correctly. Am so grateful that we were able to get to the Specialists who figured things out.. So grateful to the folks who encouraged me to do so.. Hoping we continue to find the correct information and assistance we require.

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