1. < Neuroendocrine Tumors (NETs)

Looking for neuroendocrine tumor (NET) with carcinoid syndrome support

Posted by hopeful2 @hopeful2, Jun 19, 2022

Is there a specialist and support group associated with Mayo in scottsdale or otherwise for this condition?

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

hopeful2 | @hopeful2 | Jun 27, 2022
In reply to @hopeful33250 "@hopeful2, Here is a listing of tests that can be used for the diagnosis and follow-up..." + (show)
@hopeful33250

@hopeful2,

Here is a listing of tests that can be used for the diagnosis and follow-up of carcinoids. This link is from the Carcinoid Cancer Foundation. It can give you some guidance for the tests that you need to be having, https://www.carcinoid.org/for-patients/diagnosis/diagnosis-and-follow-up-tests/. You might check to see how many of these tests you have had.

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I'm apologize for jumbling my response. Yes, in that ER visit they did a CT scan with IV contrast. That is where they did not mention any anomalies. I have not had a MRI or any other scan.

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Teresa, Volunteer Mentor | @hopeful33250 | Jun 28, 2022
In reply to @hopeful2 "I'm apologize for jumbling my response. Yes, in that ER visit they did a CT scan..." + (show)
@hopeful2

I'm apologize for jumbling my response. Yes, in that ER visit they did a CT scan with IV contrast. That is where they did not mention any anomalies. I have not had a MRI or any other scan.

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It really would be good if you can have a more thorough workup, @hopeful2. If you think your PCP would be OK reading the link from the Carcinoid Cancer Foundation link about tests to diagnose, perhaps that would help educate him/her. This is a rare form of cancer but your doctor seems to be aware of the possibility which is encouraging.

Is it possible that the EPI could be causing some of these symptoms? Here is a link to a discussion group where EPI is being discussed, https://connect.mayoclinic.org/discussion/severe-exocrine-pancreatic-insufficiency-epi/. Please take a look and ask any questions of the members but clicking on "Reply."

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