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

Posted by racb @racb, Sep 3, 2023

Hello,
Yesterday my EGD biopsies revealed the Atrophic Gastritis diagnosis that I already knew about. The polyp that the doctor biopsied in my stomach was benign. According to the doctor, based on guidelines, having one of these benign polyps (called a Type 1 Neuroendocrine Tumor) has no risk. However, in order to be super certain, the doctor recommends repeating my endoscopy at this time to make sure we resect everying and repeating an EGD in 1 year. Is anything that I should be asking the doctor? With all your experiences, what are the steps/things can be recommended for me? I appreciate all your support!

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

@racb

UPDATE: During my last endoscopy, two nodules were removed. These are the results:
DIAGNOSIS:
A. STOMACH, BODY, NODULE, BIOPSY: Well-differentiated neuroendocrine tumor (see comment) Background mucosa with chronic atrophic gastritis
Focal glandular cytological atypia, qualitatively and quantitatively insufficient for further characterization (see comment)
Focal intestinal metaplasia in 1 of 2 tissue fragments No significant active inflammation identified No Helicobacter pylori identified
B. STOMACH, BODY, NODULE #2, BIOPSY: Well-differentiated neuroendocrine tumor (see comment) Background mucosa with chronic atrophic gastritis
Patchy intestinal metaplasia present No significant active inflammation identified No Helicobacter pylori identified No dysplasia identified
COMMENT: Given the clinical history of autoimmune metaplastic atrophic gastritis (AMAG), the well-differentiated neuroendocrine tumors (NETs) in parts A and B are consistent with type 1 NETs. Grading is limited by scant sampled tumor and the superficial nature of mucosal biopsies, but no definite mitotic figures are identified in either tumor, and Ki-67 is positive in < 3% of tumor cell nuclei in each tumor, suggesting a low grade (grade 1) for each tumor (specimens A and B). Type 1 NETS typically have an indolent course regardless of Ki-67 proliferative rate.
In part A, rare atypical glands are present interdigitating between nests of the NET. While these could represent reactive changes adjacent to the neoplasm, they are qualitatively and quantitatively insufficient for definitive evaluation.

I will see the surgeon this Friday. What do I have to ask? Any support will be very appreciated! Thank you!

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Hi @racb,

As I recall you were having an appointment with a surgeon on Friday. I hope that went well and you got enough information to put your mind at ease regarding the next step in your treatment.

When it's convenient for you, please post an update.

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