Appendiceal (NET) - Recommendation for a right hemicolectomy

Before you make any decisions you need to get a second option
Then and only then can you make the right decision on how to move forward
My best wishes

@uernameanonymous11 Hi and welcome to Mayo Connect. Appendiceal NETs are pretty rare. I did a search for all Appendiceal NETs conversations and comments, and there are only a few comments. I could not find anything that addresses your questions. I am hoping that someone with experience with this type of NET might comment. I would also encourage you to get a second opinion. A right hemicolectomy is a major surgery especially for staging purposes and to rule out the possibility of microscopic lymph node involvement. You have a slow growing, ki-67 is 1%, NET. At this point, it is 1.9cm. To me, getting another opinion would help you learn more about your options. Are you having any symptoms? How are you feeling overall?

Hello @tomrennie
Thank you very much for your reply.

It is indeed so rare that it is difficult to find personal experiences about it. Most of what I have found are basically the published statistical studies.

I think exactly the same way: it is a major surgery with potential complications, mainly to stage microscopic disease in the lymph nodes.

I feel well and have no symptoms at all. In fact, I never really had any symptoms, even before the diagnosis.

However, from a psychological and emotional perspective, the waiting and uncertainty surrounding treatment are very distressing.

@sophiarose Hello!
Thank you very much for your reply.

I have an appointment with a second NET specialist later this week. So far, however, none of the doctors have clearly outlined a surveillance plan as an alternative to surgery.

I hope this consultation will provide more information and help me make a more informed decision.

@uernameanonymous11
Good morning
I am glad you replied the other important thing I should have told you is to educate yourself
Find every piece of information you can and ask every question you can think of and write everything down because trust me their is so much you will forget
This site has a great group of people so willing to help you
Come join on the first Thursday of every month they have a virtual where speakers come and questions are answered
Also there is the NCF NETS conference on Saturday 6/20 and Northwoods on 6/21
You will have tons of questions after your appointment hopefully these 3 group virtual will help you get answers or atleast some peace of mind
Go to your meeting notebook and pen in hand
Good luck
I wish you the best

@uernameanonymous11 I agree with @sophiarose with self education on the disease, but it appears you're already studying. I commend you for that and the second opinion this week. Please let us know how that goes? I am curious to see what treatment options are presented to you. Thank you.

@uernameanonymous11 How did your appointment go with the second NET specialist?

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.

Hello @jayelh and welcome to Mayo Clinic Connect. I see that this is your first post, and I appreciate the information you provided about your surgery for a carcinoid tumor in the appendix. Those of us who have had carcinoid tumors understand the feeling you mentioned, of "waiting for the other shoe to drop." It is good that you are mentioning this to your current medical team, and they are following up.

Do you still have concerns regarding your carcinoid history?

@hopeful33250 I don’t at this time. I’m having some genetic testing done now to see if I have the MEN 1 or MEN 2 genes. Thank you for your response.