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Appendiceal (NET) - Recommendation for a right hemicolectomy
Hello everyone,
I would like to share my case and hear from others who may have been in a similar situation.
I am 41 years old and was incidentally diagnosed with an appendiceal neuroendocrine tumor (NET) after an appendectomy performed.
The initial pathology report described some risk factors, but I requested a pathology review at a specialized center. After the review, the final findings were:
* Well-differentiated neuroendocrine tumor (NET G1)
* Tumor size: 1.9 cm
* Ki-67: 1%
* No mitoses identified
* Negative surgical margins
* No lymphovascular invasion identified
* Perineural invasion present
* Extension into periappendiceal adipose tissue (mesoappendix) measuring 1.55 mm
So far, there is no evidence of metastatic or distant disease.
I was evaluated at a major neuroendocrine tumor referral center. Their recommendation was to undergo a completion right hemicolectomy, mainly for staging purposes and to rule out the possibility of microscopic lymph node involvement.
What makes this decision difficult is that, after the pathology review, several of the factors that initially concerned me were no longer present, particularly the lymphovascular invasion. However, the tumor size of 1.9 cm and the presence of perineural invasion remain.
I have been reading extensively about appendiceal NETs and understand that the overall prognosis for G1 appendiceal NETs is generally excellent. Because of that, I am trying to better understand the experiences of others who had tumors between 1 and 2 cm and had to decide between a completion right hemicolectomy and surveillance.
I would especially appreciate hearing from anyone who:
* Chose surveillance after appendectomy alone;
* Underwent a completion right hemicolectomy and can share the lymph node results;
* Had their treatment recommendation change after a pathology review;
* Has been followed for several years after an appendiceal NET diagnosis.
Thank you very much for sharing your experiences. Any insights would be greatly appreciated.
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HugInterested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
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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
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1 Reaction@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.
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1 Reaction@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.
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1 Reaction@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
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1 Reaction@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.