Connect
← Return to High or Fluctuating Chromogranin A Level: What does it mean?
Discussion
High or Fluctuating Chromogranin A Level: What does it mean?
Neuroendocrine Tumors (NETs) | Last Active: Jun 18 3:39pm | Replies (184)Comment receiving replies
My husband has had high chromagranin A for years. They think from neuroendocrine cancer but have never been able to image any tumors after many many scans. He has symptoms of carcinoid syndrome as well. It is very confusing and not well understood. This is just one possibility.diagnosis came from Mayo Clinic visit.
Replies to "My husband has had high chromagranin A for years. They think from neuroendocrine cancer but have..."
Thank u so much for your reply. I am exactly the same. Could I please ask is your hhusband on any medication for Carcinoid syndrome.
Connect
Has your husband has a GA-68 Dotatate PET? It is the best scan for finding neuroendocrine tumors that frequently do not show up on regular CTs or MRIs. Mine hid for eleven years until I had an intestinal blockage. When I had that scan at Mayo in 3/20, they found quite a few scattered throughout my body.
Certainly increased CgA levels plus the flushing are usually associated with neuroendocrine tumors, but can be related to other diseases.
Good luck in your quest to find some answers, and get a treatment plan that helps your husband's situation.