Ugh. I am so sorry.
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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.
Dear @freeangel, I read your post with a growing dread. I was first diagnosed with a rectal carcinoid during my first colonoscopy in 2000. It was removed during the colonoscopy. It was small and had not produced symptoms. My gastro, internist and oncologist all told me the problem was gone, don’t worry and a carcinoid isn’t really cancer anyway. After 5 years of worrying and being rebuffed, I followed my instincts and found a specialist — on my own — a plane ride away from my Texas home. He refuted everything my local doctors had told me. There are more chapters to my story, but my point is: Find an experienced specialist and see him/her asap. Almost 20 years later, those people exist all over the U.S. If you cannot quickly see the first specialist you call, hang up and call another. You have suffered too much emotionally, if not health-wise. The kind support people here can direct you to sites where specialists are listed. I have learned to research for myself by reading everything from newspaper articles to articles in medical journals — to understand what docs tell me, to ask questions, to challenge, if necessary. I know you can find someone who knows what tests to order and is familiar with paths forward, if a carcinoid diagnosis is, in fact, accurate. Use your understandable anger to help yourself get answers, to propel yourself forward toward the best help possible.