Thank you, Teresa. And I am sorry you have been through three episodes and serious concerns linger.
Member has chosen to not make this information public.
Member not yet following any Pages.
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.
I am so relieved to hear those two concerns have been resolved in your favor. Thank you for your dedicated role as a volunteer moderator.
I am about to enter year 20 of my NET journey. I was diagnosed with a rectal carcinoid in 2020. It was found during my first colonoscopy by my sharp-eyed gastroenterologist. She did not know what she saw on the camera screen, just a tag of skin. Unfortunately the various doctors I saw as a result all told me a carcinoid is cancerlike, not really cancer, and that I was “cured” and should not worry any longer. The lesion was small, under 2 centimeters. I had not experienced any symptoms. I did the 24-hour urine test, which was negative.
It amazes me that just 20 years ago the medical community in a city as big as Dallas did not know what they were dealing with.
For 5 years I periodically looked for information on the Internet. I felt uneasy about assuming I was well. By pure luck an article was published on the front page of the daily paper about a local carcinoid support group. That gave me some new key words to search for, which led me to a rare specialist in New Orleans. He told me a rectal carcinoid has a tendency to return, and to return in the exact location of a previous tumor. He said I should have an annual colonoscopy; after 10 years I could “probably” relax about a recurrence. Sure enough, in year 10 the same gastro saw another skin tag. A cancer surgeon who specialized in abdominal and intestinal surgeries removed the carcinoid and assured me it had not penetrated the intestinal and that he had removed enough surrounding tissue to be fairly certain no cancer cells remained.
I still research on the Internet. I am not a bit reassured the cancer will never return, but I will have my 20th colonoscopy in 2020. The same gastroenterologist will perform it. I try to push the worry away, but it is always with me. Every stomach ache, every instance of excessive sweating, every bout of unexplained diarrhea sends me into anxiety, worry and stress. I am 68 now. I don’t think I can ever relax or believe the cancer is completely gone. I need to make a plan for the future, but I do not know where to start.
I was handed copies of still, color screen grabs, you might call them, by my gastroenterologist. But in my case, at least, scans as I think you mean them were not applicable. They would not have shown up on a scan. I think I am not much help to you. It sounds to me like you are not with the right doctor for you.