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

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@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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Replies to "UPDATE: During my last endoscopy, two nodules were removed. These are the results: DIAGNOSIS: A. STOMACH,..."

Hello @racb

It is good to have a list of questions to ask prior to your appointment with the surgeon on Friday. I'm wondering if you have had a Gallium 69 PET Dotatate PET scan. Here is some information regarding the importance of this scan in checking for NETs,
https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/
I would also encourage you to read the following information from the Carcinoid Cancer Foundation regarding the types of tests to diagnose and treat NETs.
https://www.carcinoid.org/for-patients/diagnosis/diagnosis-and-follow-up-tests/
It might be good to request the bloodwork and the scans suggested in this article.

I look forward to hearing from you again after your appointment on Friday. Will you post and update and let me know what information you get?

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.