@mgreene

I am glad that you posted more about your experience with rectal carcinoid. I believe that you are the first person to post about this type of carcinoid. Yes, it was a problem to find specialists who knew something about carcinoids years ago. My first tumor was discovered in 2003 and I saw a regular surgical oncologist who was very good, but he was not a carcinoid specialist. We are quite fortunate to have more specialists now and more information. I understand that there is an increase in the number of diagnoses of carcinoid, so it might be removed from the "rare disease" category. If this happens it will perhaps open up more research for all of us Zebras!

If you haven't viewed this video yet, you might find the information enlightening. Several specialists from Mayo spoke about NET treatment, Dr. Thor Halfdarnarson, a medical oncologist from Mayo Rochester, discusses the team approach at Mayo and best practices for the diagnosis, management and treatment of neuroendocrine tumors. Thor is accompanied by physician assistant Rachel Eiring, a member of the neuroendocrine cancer team at Mayo Rochester. https://youtu.be/B_PEkYN9Yz4

I am glad to hear that you are getting regular follow ups. I look forward to you continuing to post here. At Connect we all learn from each other!

Teresa

I was told after the fortunate discovery of the rectal carcinoid by my gastroenterologist in 2000 that a carcinoid was “cancer-like” but not really cancer and I should think nothing more about it. She said the biopsy margins had come back clear. My internist sent me to to a well-regarded oncologist and I sought a consultation with an oncologist at University of Texas Southwestern Medical School. All of them told me my cancer crisis was over and to relax. I have never had any symptoms of carcinoid syndrome, although every episode of diarrhea and heavy, unexplained sweating frightens me.

I was never able to “relax” and “forget about it,” but it took five years to find Dr. Lowell B Anthony in Louisiana. He agreed to see me, but my appointment date turned out to be when Katrina hit New Orleans. He had to relocate to Baton Rouge. When I finally met with him, he told me rectal carcinoid tends to return to original site and that I needed to have annual flex sig for four years and colonoscopy every five years. He said if the carcinoid did not return after 10 years I could probably back off annual scanning. In year 10, the same gastro who discovered the first tiny tumor in 2000 saw another tag of tissue in the same area as original tumor. This time I had surgery by a colon cancer surgeon with a strong reputation for successful abdominal and gut surgeries. I have had 7 years of my second set of annual scans. Pre-cancerous polyps have been discovered but no carcinoids, so far. Even if I am thought to be cancer-free in 2020, when I will be 69, I will not be able to “relax” and “forget about it,” I plan to continue the annual scans. Maybe after 20 years I will let it go.

Thank you, Teresa, for the video referral. I will watch it.

So sorry. There is a typo in my Sunday reply. It should have read the rectal carcinoid returned in 10 years, not 20. I cannot figure out to correct my comment.