Type 1 Neuroendocrine Tumor with no risk: What should I ask doctor?

Keep your follow up.

Definitely keep your follow up. If you feel it’s something you need to be seen for or more serious then ask them to move up the date. Please see a NET specialist. I had one dr strongly feel my NET tumor in the tail of my pancreas was a splenule. I’m glad I listened to my intuition and kept pushing the doctors for more than a best guess. I had a gastroenterologist who also felt it was a NET and not the splenule. She found me a NET specialist with Texas Oncology and I had surgery in May to remove 1/3 of pancreas (NET was in the tail) and my spleen. I’m recovering well and so glad I pushed forward.
My love and prayers are with you 💜💜💜💜

Thank you Michelle! I will follow up, and request a NET specialist! I am glad to hear you are recovering well!!! Sending positive vibes your way!

Great question, @racb. Questions I would ask the doctor would include:
- Were you able to get clear margins around the polyp?
- How often should I get an endoscopy to monitor?
- What are my risk factors?
- What are the next steps? What else do I need to know?

Racb, when will you have the follow-up endoscopy?

I will speak from my experience. My GI doctor found a polys in my rectum during my first colonoscopy screening in May 2023, and the biopsy revealed that it is a NET (Ki-67 < 3%, WHO grade 1 of 3), I did quite some online reading and asked questions on this forum. I ended up seeing a NET specialist at Ohio State University (OSU) James Center, and had a 2nd visit to my GI doctor to remove more tissues around the original ploys location and had a GA68 PET/CT scan at OSU. Luckily the 2nd biopsy and I also and GA68 scan didn't find any other NETs.
I will do another colonoscopy next year with my GI doctor, and may switch to 3-5 years colonoscopy schedule if everything goes well. I don't need to see my NET specialist unless the NET shows up again in the future.
It is interesting to hear your doctor calling Type I NET benign and no risk. My NET specialist use the term "not life threating".
Good luck with your NET journey and I wish you the best.
Mike

Thank you Mike!

Hello Colleen, Thank you for the questions! They are great! I will have another endoscopy this Thursday.

Hello @racb

I see that I am coming in a bit late to this discussion you started. I hope that your endoscopy on Thursday provides you with good feedback. In addition, to the questions that @colleenyoung suggested, I would also ask the doctor to let you know the Ki-67 value of the tumor.

Here is some information about the Ki-67 values and the information that it provides, https://www.cancer.net/cancer-types/neuroendocrine-tumors/grades.

It is my understanding that even if the Ki67 value was not tested for on the original tumor, it can be tested after the fact on the slides when the tumor was removed.

I look forward to hearing from you again. When it's convenient for you, will you post after the endoscopy?

Hi i am 55 male. I had colonoscopy 10/1/2021 and was told polyps were benign and to come back in 8yrs. Nov 21, 2022 i had an ultrasound for stomach bloating and pain. By Jan2023 they had determined it was a NET. My PETScan 1/19/23 showed NETS in SI, stomach wall and liver. If i were you I would demand an MRI to determine if your NETS are anywhere else. Earlier is better. Note Steve Jobs.

Mine were Type 1 as well.