NET Stage 2 in Stomach

Hi did you have a lot of symptoms before they found it? Did you have a biopsy?

I did but I thought they were worsening preexisting conditions. I already have IBS, GERD and a small hiatal hernia. So I went to my gastroenterologist and I had an endoscopy about 3 weeks ago and he found a polyp and biopsied it and we just got the results back two days ago. I have another endoscopy today to mark the spot where the polyp was so the surgeon can find it.

@soonermimi Hi and welcome to Mayo Connect. Sorry to hear about your diagnosis. Is your gastroenterologist a NET specialist by chance? Other than the MRI and endoscopy, has any other blood work or tests been done? Thanks.

@tomrennie, thank you for the welcome. No, is not but he did consult with an oncologist and the surgeon who will do the wedge, who is an oncology surgeon. He had talked to them before I got the news. And we talked about possibly doing a laparoscopic wedge but I decided against it.

@soonermimi: If I were you I would get a referral for consultation regarding NET treatment - your local Oncoligist knows little to nothing about NET tumors, how they function nor the specific way to manage them. NET Specific Medical Oncoligusts can arrange a “tumor board” consultation where all NET specialists can compare/select best case scenario for your RARE cancer tumors… then you will have opportunity to choose what is best for you right now.
Neuroendocrine tumors behave differently than “stomach cancer” and there are many treatments that you have available,
Research through Mayo Connect, Lacnets, Carcinoid Tumor Research and others to gain knowledge to prepare you for best decisions.
Many of us NET patients can provide general care answers and most importantly have personal experience to help you.
My experience is: Don’t let a General Surgeon touch you. NET cancers need specialized procedure!

I am so sorry you are facing this. A NET specialist in a reliable institution works with a tumor board. A Gallium Dotatate or similar test needs to be done. That was the test that would have shown the local oncologist and surgeon that they were operating in the wrong place. They did not do the best test. They needed to go to the primary location. They did not even know that I had a primary location. Fortunately, wise people told me to go to an institution that had a NET specialist with a tumor board. The Neuroendocrine Cancer Foundation has peer to peer counseling and a social worker that I found helpful. Perhaps you will too.
Support Line: https://www.
Peer to Peer on practicals: ncf.net/supportline
NET coaching with free sessions with NET trained professional: https://www.ncf.net/healthcoaching
Feeling for you.. There are so many good people in the NET community to help. We are no longer alone.

Peer to Peer help: https://www.ncf.net/netconnect

Thank you all for your support and advice! I will certainly consider an expert opinion.

I feel weird about doing that since my doc is so confident everything is no big deal (not his words — my interpretation).

@soonermimi

As others have suggested, having at least one consultation with a NET specialist as you begin this journey is a wise decision. There are NET specialists at all three Mayo Clinic locations (appointment information is available at http://mayocl.in/1mtmR63). If it is not possible to be seen at a Mayo facility, here is a link from the Neuroendocrine Tumor Research Foundation with NET specialists in the U.S.: https://netrf.org/for-patients/neuroendocrine-tumor-doctor-database/page/8/

NETs are a rare cancer, and a NET specialist will help you determine the best treatment plan.

How are you feeling? Are you able to eat comfortably? Any weight loss?