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

Where did he go to have surgery?

Was it fdg pet or dota pet?

Dota pet

Maybe he has a partial blockage of his intestines. Have you had an oncology surgeon look at his scans? My surgery was an emergency as NET blocked the SI. Same symptom after eating.

It started with loss of appetite, nausea, diarrhea, body ache, feeling hungry with a bloated stomach and eventually a 100 pound weight loss.

We are in Australia. He got it done at Gold Coast University Hospital. Team of Surgeons did laparoscopy and stayed in the hospital 8 days. He is week 3 post op. Drains still intact m draining hoping to be removed soon. Surgeon aimed < [0 cv before he cam removed it.

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!

I had one in my colon 12 yrs and surgery ago now in the breast surgery then found in the colon again but they don't want to take it out they say it's small.. just don't feel right not to get it out. Seeing oncology later this week. Not in liver yet

Hello @kdgranger and welcome to the NETs support group on Mayo Connect. I am glad that you found this forum and that you are posting your questions and concerns. When we are dealing with a rare form of cancer, like NETs, it is helpful to find others who have experienced this same thing, isn't it?

You mentioned that you had surgery 12 years ago for a NET in your colon. Is that correct? It appears that you have also had surgery for a NET in your breast. Was this a lumpectomy? Was there any other treatment for the breast NET?

You might want to read through the posts in the following discussions where members have had NETs in the breast.
https://connect.mayoclinic.org/discussion/ned-of-breast/
and
https://connect.mayoclinic.org/discussion/neuroendocrine-cells-in-breast-and-lungs-dipnech/?commentsorder=newest#chv4-comment-stream-header
I can understand your concern regarding this new NET in the colon. Please remember that it is always the patient's right to get a second opinion, whenever you feel the need. If you do get a second opinion, I highly recommend that you consult with a NET specialist. Mayo Clinic has NET specialists at all there of their locations. If you would like an appointment at Mayo Clinic for a consultation, here is the link that will help you get an appointment, https://connect.mayoclinic.org/discussion/ned-of-breast/.

If an appointment at Mayo is not a possibility, for any reason, here is a list of NET specialists worldwide,

https://www.carcinoid.org/for-patients/treatment/find-a-doctor/. On this list, NET specialists are listed by state and then by country.

Seeing a NET specialist, either by a virtual or by an in-person appointment can help you feel more confident about your current medical treatment. Often, after a consultation with a NET specialist, you can then follow up with your current oncologist.

Have you considered getting a second opinion in order to determine if the "watch and wait" approach for this new NET is the best option?

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?