This is year 20 since the diagnosis of my first rectal carcinoid. It was not large enough to cause the carcinoid syndrome, evidently. In 2010 I had a recurrence in the area and had surgery to remove it. Again it was under the usual size where the tumor metastasizes to cause the syndrome. Within the last three years a treatment and research department has opened at one of the major hospitals in Dallas. I have not had an oncologist, ever, because I have never had any symptoms. I have consulted twice with an out-of-state specialist. I sought an appt in 2018 at the new neuroendocrine department at Baylor, hoping to learn what tests or scans could provide surveillance for me. I was rebuffed because I did not have any symptoms. I have an appt Feb 13 with a different doctor there. That doctor also questioned my need for an appointment but finally agreed to see me.
I have had a colonoscopy or flex sig annually for 20 years to watch for recurrence. Does anyone know if the Gallium68 is a good test for identifying rectal carcinoid? The Chromograinen test is not, the specialist told me (10 years ago). I suppose the specialist I see next month will know that, but I am anxious. I do not understand why it has been so difficult to get a doctor to have machines and technology look for evidence of the cancer *before* it grows enough to cause the syndrome.