@lauriejane: If I were you I would read and take notes from the many Neuroendocrine Tumor posts given on Mayo Connect. Then you can post the few questions or needed explanations not resolved from your research.
You will be able to deal with the many details of your disease by absorbing and internalizing this info. You are not alone! We are here to help, but you will benefit by being persistent in your search for acceptance. Best…

Hello @lauriejane and welcome to the NETs support group on Mayo Connect. I see that @dbamos1945 has already responded to your post with helpful ideas. I would also encourage you to look through the list of discussions in the NETs support group. Here is a link to that list (it goes on for several pages), https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/

Here are some discussion groups that speak of stomach NETs and gastroectomy:
https://connect.mayoclinic.org/discussion/partial-gastrectomy/
https://connect.mayoclinic.org/discussion/anyone-have-a-stomach-net/?pg=2#comment-897597
I understand you when you say, "The uncertainty of what is to come has been difficult for me." We have all felt that way and some of us still do.

I look forward to hearing from you again, @lauriejane. Please share a few more details about your NETs diagnosis. For example, when you say that you had a "total gastrectomy..." could you explain what that means, i.e., was the entire stomach removed? What type of symptoms were you having that led to the discovery of NETs?