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.

Teresa, Volunteer Mentor | @hopeful33250 | Jan 22 1:57pm

In reply to @dadcue "@fraaseo I already have more than my fair share of chronic inflammatory diseases." + (show)

@dadcue With a "possible diagnosis of NET," it would certainly be wise to follow up, Mike. NETs, like other cancers, are best diagnosed and treated in the early stages. I hope you keep in touch and let me know how you are doing with all of this.

Will you continue to post?

Mike | @dadcue | Jan 22 7:33pm

In reply to @hopeful33250 "@dadcue With a "possible diagnosis of NET," it would certainly be wise to follow up, Mike...." + (show)

@hopeful33250

I'm not too worried about it yet. It was just something on an abdominal CT scan report that was only looking at my kidney stones. The urologist never said anything about it. My PCP brought it up at a routine follow-up visit. My PCP sent a GI consult to see if anything needed to be done. I don't mind doing the labs. I just think a capsule endoscopy seems like a bit much since I'm not symptomatic. Some things I would rather not know about.

Teresa, Volunteer Mentor | @hopeful33250 | 6 days ago

In reply to @dadcue "@hopeful33250 I'm not too worried about it yet. It was just something on an abdominal CT..." + (show)

@dadcue I was never symptomatic when NETs were found. This is true for many NETs patients. I wish you well in whatever action you take.

gustavo1975 | @gustavo1975 | 6 days ago

In reply to @dadcue "I like the idea of no treatment plan. Do I really want to get a work-up..." + (show)

@dadcue Hi Mike, how are you? With all due respect, my suggestion is that you go for that checkup, and if you can get the chromogranin A test done, that would be ideal. While it doesn't tell you anything on its own, along with other symptoms, it could help determine if it's something serious or not. I understand that you might be tired of going to doctors and all that, but it would be good to get that checkup. Good luck.

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rkklinger | @rkklinger | 5 days ago

My husband was diagnosed with a NET because our gastroenterologist saw a shadow during a colonoscopy in 1995. It was surgically removed along with 1/3 of his colon. At that time, there was no treatment available. He was rediagnosed 12/22. He is now Stage 4 and being treated with lanriotide every 28 days. All tumors are stable and have not increased. He leads a very normal life during anything he wants to do including riding a bike for 30 minutes/day and doing 100 pushups daily. Today after 3 years of treatment, he is being scanned every 6 months as opposed to 3 months.
Our suggestion would be to see a NETS specialist for a treatment plan if any is needed at this time. All 3 Mayo Clinics have NETS specialists. We are very thankful for the doctors that we see at Mayo Rochester. They are knowledgeable and kind. This is often a difficult journey and it helps to stay as positive as you can. Good luck !!

doonman | @doonman | 5 days ago

In reply to @gustavo1975 "@dadcue Hi Mike, how are you? With all due respect, my suggestion is that you go..." + (show)

@gustavo1975 I agree i had a NET removed from my small intestine in 2004 now 21 years later my Chromograin A came back high. I did a Pet Scan and the same kind of carcinoid tumor has reappeared. Only reason I know is the Chromograin A test. I would suggest doing the test. I wish you the best. Good luck.

panorman3 | @panorman3 | 13 hours ago

In reply to @hopeful33250 "Hello @meleve and welcome to Mayo Connect. I can certainly understand your concern after your oncologist..." + (show)

@hopeful33250 i have a carcinoid tumor in my mesentery doctor is using "the L shot" says it is two hard to reach so no operation. i tried to get through to you guys but was not successful.
Thanks Rev. Paul Norman sr