My primary NET was in the small intestine lining—did not show up in any scans. I had a larger secondary NET in the mesentery that was walnut sized. When I had surgery (20 inches of small intestine removed, the primary tumor was found by manually exploring the intestine that was removed and finding it as a hard BB sized tumor within the lining of the intestine. My surgical oncologist said he found the primary about 80%of the time Pathology confirmed the primary was NET. All that was reassuring but I was prepared they might not find it. I would encourage you to go with what is known, but don’t hesitate to question and seek additional information and opinions so you are confident in your next steps. NETS are different than other solid tumors in many ways (primary smaller than secondary so I was told) so you need a NET expert on your team. Good luck and think positively—I was diagnosed in 2014, have had one GI surgery, mets to my liver, ablation of half the liver mets, 5 years of monthly Lanreotide, now on Everolimus for 6 months—and I am doing well, generally feeling good.