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Recently Diagnosed with Duodenal Neuroendocrine Tumor Grade 1
Neuroendocrine Tumors (NETs) | Last Active: Nov 6, 2023 | Replies (4)Comment receiving replies
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
Replies to "In july2003 my Endo Report said part of my duodenum has NET Tumor 1 then in..."
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?
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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?