1. < Neuroendocrine Tumors (NETs)

determination of primary site of NET

Posted by rebecka93 @rebecka93, Feb 7, 2023

My son, age 29, who has had very serious digestive problems (sigmoid volvulus resulting in left hemicolectomy, small bowel blockage, bowel perforation, strangulated abdominal hernia, extensive adhesions, etc) recently had a colonoscopy and now a NET was found in his rectum. It was small and grade 1, positive for synaptophysin, but his surgeon didn't think that testing for other NETs elsewhere in his body was necessary. He also didn't tell us if the NET was a primary tumor. Should my son have further tests, and can a biopsy determine if the tumor that was found was primary or if metastasized?

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

rebecka93 | @rebecka93 | Feb 13, 2023
In reply to @hopeful33250 "To @phyllisden @terryabk @rebecka93 Just a suggestion as you post: I wanted to let you know..." + (show)
@hopeful33250

To @phyllisden @terryabk @rebecka93

Just a suggestion as you post:
I wanted to let you know that it is always best to begin your post with an "address". By address, I mean use the member's screen name (as I've used yours at the beginning of this post). Include the "@" along with the name. By using this format, the recipient will get a notification that you have responded to them. Otherwise, the response might not be noticed.

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thank you, I definitely will!

REPLY
rebecka93 | @rebecka93 | Feb 13, 2023
In reply to @hopeful33250 "Hello @rebecka93 I appreciate your comment and questions. To answer your questions: No, I never had..." + (show)
@hopeful33250

Hello @rebecka93

I appreciate your comment and questions. To answer your questions:
No, I never had any symptoms, the NETs were found during a routine upper endoscopy for other digestive issues, which was 20 years ago.

It is felt that these NETs were primary and that the previous surgeries might have left some cells in the area (all the NETs were found in the same location).
My other lab tests (Serotonin blood levels, 24-hour-urine) do not indicate any carcinoid activity and I have no carcinoid syndrome symptoms. I'm nearing age 75 and have chosen not to go through additional testing unless new symptoms or problems appear.

Given your son's age and previous digestive tract problems, I hope that he is able to see a NET specialist. Here is another link to lab tests that are used for diagnosis and follow up which might be helpful to him. This is from the CCF website as well:
--Diagnosis and follow up
https://www.carcinoid.org/for-patients/diagnosis/diagnosis-and-follow-up-tests/
I hope that all goes well for your son. Will you post if you have other questions?

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Hi @hopeful33250
Again, thank you for message! Your information about your NETs all being in the same area, and your having no carcinoid activity / symptoms, is very helpful. It's wonderful that yours didn't spread and were discovered and treated.

My son is waiting for his doctor's referral to the NET specialist in Portland that we are hoping to see.

Your offer to keep communicating about this is such a comfort - thank you!

Rebecka

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 13, 2023
In reply to @rebecka93 "Hi @hopeful33250 Again, thank you for message! Your information about your NETs all being in the..." + (show)
@rebecka93

Hi @hopeful33250
Again, thank you for message! Your information about your NETs all being in the same area, and your having no carcinoid activity / symptoms, is very helpful. It's wonderful that yours didn't spread and were discovered and treated.

My son is waiting for his doctor's referral to the NET specialist in Portland that we are hoping to see.

Your offer to keep communicating about this is such a comfort - thank you!

Rebecka

Jump to this post

@rebecka93
Wishing your son, all the best!

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