← Return to Carcinoid tumor of the appendix.PET scan results

Discussion

Carcinoid tumor of the appendix.PET scan results

Neuroendocrine Tumors (NETs) | Last Active: Feb 21, 2023 | Replies (12)
Comment receiving replies
@rice099

First time here and would appreciate any info from folks with a similiar issue. I had a carcinoid tumor successfully removed from my left lung in 1996 - even before they classified it as cancer. Went to the ER with appendicitis last September. Scan showed swollen appendix with signifigant inflammation in the surrounding area. Pancreas, liver, lungs, etc all appeared normal. Decision was made to treat with antibiotics and make a decision on surgery later. Chromogranin was 457. Colonoscopy was recommended which will be done next month. Dr. seems to belive there is another extremely slow growing carcincoid tumor in the appendix. I understand Prilosec which I've been taking for years can cause a false positive. Has anyone else experienced anything like this?

Jump to this post

Replies to "First time here and would appreciate any info from folks with a similiar issue. I had..."
Teresa, Volunteer Mentor | @hopeful33250 | Feb 21, 2023

Hello @rice099 and welcome to the NETs discussion on Mayo Clinic Connect. I have moved your post to this discussion group so that you could meet with others who have had NETs in the appendix. I'm glad that you found this forum. It is good to be able to connect with others who are also dealing with this rare type of cancer.

You are right, Prilosec is a Proton Pump Inhibitor (PPI) medication, and its use can cause the Chromogranin number to be artificially high. However, there are other lab tests that can be done to determine NETs/carcinoid activity. Blood tests that show the Serotonin level and a 24-hour-urine test that can also tests the Serotonin level can be done. Have you had these lab tests?
There is a sophisticated scan, 68 GA Dotatate PET scan, that can also be used to show NET activity in the body. Here is a discussion on Mayo Connect that will explain how this scan is preferable to other scans in detecting NETs.
--68 GA Dotatate PET
https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/
How are you feeling, @rice099? Are you having any carcinoid syndrome symptoms? (This would include facial flushing and diarrhea.)

VIEW AND REPLY