I have never had symptoms. My NET's were discovered accidentally during a CT scan when they were looking for a possible hernia. Fortunately, the first specialist I saw was a surgeon at Michigan State University who recognized the NET's immediately. A blood test showed chromogranin A and serotonin levels many times normal. I'm now seeing an oncologist at University of Michigan Health - Sparrow, who has me on monthly Octreotide injections. After two injections, chromogranin A and serotonin levels are near normal. I've had MRI's, CT scans, PET scans and a liver biopsy to confirm the surgeon's original diagnosis and still don't have symptoms. Based on what I read here, every NET case is unique. There is simply no set of rules on diagnosing them. All you can do is work through your primary care physician and keep pushing for tests from specialists until the answer appears. I was very fortunate with the surgeon at MSU, as there are no NET specialists near here.

While the disease appears to have been handled appropriately, the co-pays are killing me. We found an organization called Ameripharma through this forum. Ameripharma supplies the Octreotide directly to the hospital, and appears to have eliminated the $1200 co-pay for each injection. The scans and MRI's are running in the $500-$800 range and the hospital has worked with us to arrange payments.