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Neuroendocrine Tumor - no treatment plan method
Neuroendocrine Tumors (NETs) | Last Active: 23 hours ago | Replies (171)Comment receiving replies
Maievee
What you are going through is so difficult. I think that there are many NET patients who have gone through something similar. We were told that we were being watched well, or that we were overly concerned. In order to feel heard and assurance we needed additional assistance.
I went through something similar for two years. CAT scans did not show that I had Cancer. A Gallium Dotatate scan show functional NETS. I needed to get to a NET Specialist who had a Tumor Board Team.
Link to my post on NET Specialist: https://connect.mayoclinic.org/discussion/what-makes-a-reliable-net-specialist-doctor/
Link to my post on https://connect.mayoclinic.org/discussion/net-1/
I hope the links work. If they do not perhaps one of the Mentors can assist. And I hope the information here is helpful for you. It has been helpful for me. Nice to know that we are together rather than alone in this NET endeavor of receiving the best information and care we can. Hoping for you too.
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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.
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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.