Recently Diagnosed with Duodenal Neuroendocrine Tumor Grade 1

Hello @prasad3029 and welcome to the NETs discussion group on Mayo Connect. I'm glad you found this forum, it is important to get support when you are dealing with a rare disorder like neuroendocrine tumors. I have had three surgeries for NETs in the duodenal bulb, so I do understand your concern.

I would strongly encourage to seek out a consultation with a NET specialist. These are oncologists who are especially trained in the diagnosis and treatment of NETs. At Mayo Clinic's three campuses, you will find these specialists. If you are interested in an appointment at Mayo, here is a link to request an appointment, http://mayocl.in/1mtmR63.

If you are not able to see a Mayo specialist, here is a list of NET specialists throughout the U.S. https://www.carcinoid.org/for-patients/treatment/find-a-doctor/.

An in-person or a virtual appointment should be most helpful to you and put your mind at ease as to the correct follow-up procedure(s) for your duodenal NET. If you are comfortable sharing more, was your duodenal NET found as a result of symptoms you were experiencing or was it an incidental finding?

In july2003 my Endo Report said part of my duodenum has NET Tumor 1 then in Oct 2023 went again and the whole portin remove /cauterize but further report said its now NET2 well diffrentiated .Please can some one advise me on what to do how could be from 1 to 2 for only 2 month apart

Welcome, @wanimdee. I moved your question about duodenum NETs to this existing discussion:
- Recently Diagnosed with Duodenal Neuroendocrine Tumor Grade 1
https://connect.mayoclinic.org/discussion/recently-diagnosed-with-duodenal-neuroendocrine-tumor-grade-1/

I did this so you can connect with @prasad3029 @rocket102 @k8lyn23 and@hopeful33250, who also have experience with duodenal neuroendocrine tumors.

Wanimdee, what are next steps for you?

Hello @wanimdee

I would like to join Colleen, @colleenyoung, in welcoming you to Connect. I am sorry that I can't answer your question about how your NET went from NET 1 to NET 2. That is a good question for your doctor.

I have had three surgeries for NETs in the duodenal bulb over the past 20 years. These are very small, slow-growing cancers. However, it is also a rare cancer, and it is good to learn as much as possible.

You might take a look at the biopsy report and see if a K 67 test was done on the biopsied tissue. This test shows how quickly the tumor is growing.
Here is a link to information about this test: https://www.carcinoid.org/?s=K+67

What other tests have been done? I'm thinking about blood tests, the 24-hour urine test. Here is a link about the different tests that are used to follow-up or diagnose NETs., https://www.carcinoid.org/for-patients/diagnosis/diagnosis-and-follow-up-tests/,

Did you ask your doctor about this change in the staging of the NET? If not, please do so. Remember that it is always you right to seek a second opinion if your questions are not being answered to your satisfaction.

If you do seek a second opinion, I would highly recommend seeing a NET specialist. Mayo Clinic as NET specialists at all three of their locations. If you would like to consult with a Mayo specialist (either virtually or in-person) here is link with information about obtaining an appointment, http://mayocl.in/1mtmR63. If you cannot be seen by a Mayo specialist, here is a link to NET specialists world-wide, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/.

If you are comfortable sharing more, I'm wondering what symptoms led to your diagnosis?