1. < Neuroendocrine Tumors (NETs)
Profile picture for meleve

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.

Profile picture for Teresa, Volunteer Mentor
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 3 1:24pm
In reply to @anon0995 "@hopeful33250 Teresa - THANK you for posting the link to the Neuroendocrine Research Foundation (NETRF)! The..." + (show)
Profile picture for anon0995 @anon0995

@hopeful33250

Teresa - THANK you for posting the link to the Neuroendocrine Research Foundation (NETRF)! The site is a WEALTH of information and what I especially appreciate are the videos available on YouTube. The videos are typically the copy of a live event, whether it be a conference or a NET specialist addressing a specific type of NET, e.g., small bowel (SB) NET, or a pancreatic or lung NET. The information is invaluable, especially for those who have NO IDEA what to expect when diagnosed with NET.

They have videos such as: Neuroendocrine cancer 101... the most basic of information and advance from there; and while reading questions from many Mayo Connect posters, they appear to be floundering and have no idea NETRF should be, in my opinion, the 1st place to use to begin learning about NETs.

While the Connect moderators are okay, your posts are the only ones I've read that offer other resources other than Mayo (which is pretty poor dishing out info, IMO). NETRF is a one-stop shop for finding accurate, in-depth, NET specialist(s) medical information).

I've pretty much given up reading Mayo Connect due to lack of information - seems more like the blind leading the blind, desperately wanting help and support. Connect is good for support, not so much for 'real' educational NET info.

Sorry to be a Debbie Downer, and this post IS only my opinion, but I haven't learned one thing new about NETs from Mayo Connect, 🙁 (and I'm an "info junkie" who researches everything I can, including journal articles from reputable sources using PubMed, nih.gov articles, etc.)

Jump to this post

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?

REPLY
Profile picture for Justin McClanahan, Moderator
Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | May 3 3:59pm
In reply to @anon0995 "@hopeful33250 Teresa - THANK you for posting the link to the Neuroendocrine Research Foundation (NETRF)! The..." + (show)
Profile picture for anon0995 @anon0995

@hopeful33250

Teresa - THANK you for posting the link to the Neuroendocrine Research Foundation (NETRF)! The site is a WEALTH of information and what I especially appreciate are the videos available on YouTube. The videos are typically the copy of a live event, whether it be a conference or a NET specialist addressing a specific type of NET, e.g., small bowel (SB) NET, or a pancreatic or lung NET. The information is invaluable, especially for those who have NO IDEA what to expect when diagnosed with NET.

They have videos such as: Neuroendocrine cancer 101... the most basic of information and advance from there; and while reading questions from many Mayo Connect posters, they appear to be floundering and have no idea NETRF should be, in my opinion, the 1st place to use to begin learning about NETs.

While the Connect moderators are okay, your posts are the only ones I've read that offer other resources other than Mayo (which is pretty poor dishing out info, IMO). NETRF is a one-stop shop for finding accurate, in-depth, NET specialist(s) medical information).

I've pretty much given up reading Mayo Connect due to lack of information - seems more like the blind leading the blind, desperately wanting help and support. Connect is good for support, not so much for 'real' educational NET info.

Sorry to be a Debbie Downer, and this post IS only my opinion, but I haven't learned one thing new about NETs from Mayo Connect, 🙁 (and I'm an "info junkie" who researches everything I can, including journal articles from reputable sources using PubMed, nih.gov articles, etc.)

Jump to this post

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/.

REPLY
Profile picture for kevinmonroemi
kevinmonroemi | @kevinmonroemi | May 4 8:49am

I 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.

REPLY
Profile picture for vinnie694
vinnie694 | @vinnie694 | May 5 8:09am
In reply to @anon0995 "@hopeful33250 Teresa - THANK you for posting the link to the Neuroendocrine Research Foundation (NETRF)! The..." + (show)
Profile picture for anon0995 @anon0995

@hopeful33250

Teresa - THANK you for posting the link to the Neuroendocrine Research Foundation (NETRF)! The site is a WEALTH of information and what I especially appreciate are the videos available on YouTube. The videos are typically the copy of a live event, whether it be a conference or a NET specialist addressing a specific type of NET, e.g., small bowel (SB) NET, or a pancreatic or lung NET. The information is invaluable, especially for those who have NO IDEA what to expect when diagnosed with NET.

They have videos such as: Neuroendocrine cancer 101... the most basic of information and advance from there; and while reading questions from many Mayo Connect posters, they appear to be floundering and have no idea NETRF should be, in my opinion, the 1st place to use to begin learning about NETs.

While the Connect moderators are okay, your posts are the only ones I've read that offer other resources other than Mayo (which is pretty poor dishing out info, IMO). NETRF is a one-stop shop for finding accurate, in-depth, NET specialist(s) medical information).

I've pretty much given up reading Mayo Connect due to lack of information - seems more like the blind leading the blind, desperately wanting help and support. Connect is good for support, not so much for 'real' educational NET info.

Sorry to be a Debbie Downer, and this post IS only my opinion, but I haven't learned one thing new about NETs from Mayo Connect, 🙁 (and I'm an "info junkie" who researches everything I can, including journal articles from reputable sources using PubMed, nih.gov articles, etc.)

Jump to this post

@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..

REPLY
Please sign in or register to post a reply.