5 months ago, I had a 'gut' feeling (no symptoms) and chose to pay for a full-body MRI. They discovered metastatic NETs in my sm. bowel which spread to my liver (8-10 lesions. They told me slow growing, but luckily last week I went to the ER where they found the cancer had grown 2 cm. (in 2 months). No longer slow. I am in a clinical trial and being treated by an NET Oncologist. Surgery is not an option and I am on Lanreotide (Somatuline). They are hoping it will slow down the spreading.
My suggestion: find a specialist in NETs and be proactive. If you can get in a Clinical Trial then moving forward might be faster. Timing is everything. With newer tests, they are finding out more and more people that have this. I wish you the best of luck!