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Neuroendocrine Tumor - no treatment plan method
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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HugInterested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
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Hello @anon0995,
I'm so glad that you found the website helpful. Like you, I'm a visual learner, and videos are a great way for me to learn.
I joined Mayo Connect when I was facing my third surgery for NETs, and I found the support very helpful. Just to know that others had survived recurrences was encouraging to me. This seems to be true for lots of the members of our NETs group here on Connect.
Will you keep in touch and let me know how you are doing?
Hello @anon0995,
Mayo Clinic Connect is an online community, connecting patients and family caregivers with each other. You do not have to be a Mayo Clinic patient or caregiver to join the conversations. Community members share experiences, ask questions, find answers, give and get support and exchange vital information. Mayo Clinic values patient and caregiver knowledge and recognizes you as Experts By Experience.
Experience does not replace professional medical advice. It does not replace a diagnosis. It does not replace treatment. Mayo Clinic Connect does have Expert Blogs & Articles here, https://connect.mayoclinic.org/blogs/.
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3 ReactionsI agree with Justin! Sometimes it’s the first place someone actually gets some NET information, and real empathy from others that have gone through what they are facing. Mayo also has monthly virtual support meeting sometime feature world class NET specialists.
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3 Reactions@anon0995 The mentors do post where you can find additional information .(other than Mayo). like you said everyone’s opinions are different and we seek information starting at all different levels of knowledge and education.. This site has helped me and guided me to other information sources as well. Also learning of other experiences it gave me more questions I could pass on to my medical team.. Have a wonderful day..
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5 Reactions@meleve now is definitely the time to act. Ct scans give an incomplete picture since they only take images at regular intervals. (Imagine a 10 layer cake, the frosting gets imaged, the cake does not). Thus, small tumors can be missed. If the pathology recommended resection follow-up and insist on it since early action will produce the best results. I am glad you are scheduling a follow-up and do not be afraid of getting a new doctor.
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1 Reaction@pathpath Hi and welcome to Mayo Connect. You seem to have some experience with CT scans. What caused you to have that familiarity? What ails you? Thanks.
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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1 Reaction@tomrennie
I work in the allied health field and have family with NETs.
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1 Reaction@pathpath Since you have family with with NETs, do you know if any of them have genetic mutations?
@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.
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