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.