I am 60 years old now. I had an incidental finding of a 2cm “carcinoid” tumor in the tip of my appendix when I was 28 years old.

The surgery I had was a two surgeon operation. One surgeon was a gynecologist removing a mass on my ovary which later was determined to be a dermoid tumor and the other surgeon removed my appendix. The appendectomy was performed because surgeon’s did that if your abdomen was going to be opened anyway to prevent a future surgery in case of appendicitis and some other issues I had concerning adhesions from a prior gallbladder removal surgery.

In a shocking phone call a few weeks after my surgery I was told by the surgeon that removed my appendix that a 2 cm carcinoid tumor was found in the tip of my appendix. He believed that the carcinoid tumor had not broken through the outside of the appendix and that no other treatment was needed. That was the only information I was given after my surgery. Back then, 1994, they knew very little about carcinoid tumors. There were no ki % numbers, staging or any other information. I was told by my gynecologist surgeon at my follow-up that finding a carcinoid tumor in my appendix was so rare that it was like winning the lottery 2 times in my lifetime. She said that she probably would not ever have another patient in her practice having another one.

After the surgery I went on with my life having no scans or any testing. It never even occurred to me to have any follow-up scans or testing until I saw an obituary in the local paper in the early 2000’s stating the cause of death was neuroendocrine cancer. I knew by then that neuroendocrine cancer was what my carcinoid tumor was called. I asked my family doctor at the time if she thought I should have any follow-up testing. So she had me do a 5-HIAA 24 hour urine test. It was negative.

Ten or more years later I asked my gastroenterologist about testing and he did a Chromogranin A blood test to check for tumor growth. That was very low also. I asked my gastroenterologist that if the same size carcinoid tumor was found in my appendix now, what would happen? He said that a hemicolectomy would be done.

I have had two 5-HIAA 24 urine tests since 1994 and 1 blood test for tumor growth and several abdominal CT scans for other issues since 1994. It’s been 32 years.

I have been lucky. But ever since I saw that obituary I have spent my life waiting for the other shoe to drop.

I would definitely get a second or third opinion. What ever you need to make a decision on the hemicolectomy. With the hemicolectomy surgery there are other problems with having that done. You can always do monitoring very closely in the beginning and as the years go by monitor annually.

My decision to just monitor was only because there was no internet back then to look things up and I trusted the knowledge of the surgeon. I was naive.

Good luck with your decision. I hope my information helps you.