@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.

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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)
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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.