Hi. I too am on a watch and wait recommendation and am very uncomfortable with that. My NETs were found incidentally - went in for an excruciating nerve pain issue in the front of one leg and they did a CT... and wow. I went immediately to my PC physician at Mayo and was referred to Dr. Jason Starr in Jacksonville. I have a primary tumor in my small intestine. Two colonoscopies later, and one biopsy, no one can get to my tumor non-surgically so a biopsy was done from a spot/tumor big enough to get viable samples on my peritoneum. The many, many spots on my liver were too small and not viable for the biopsy. Biopsy confirmed positive for malignancy - well differentiated neuroendocrine tumor, grade 2. I was diagnosed with stage 4, metastatic cancer with tumors in my small intestine, liver, peritoneum, and lymph nodes. Right now my only symptom is pain, sometimes significant, up under my right ribs (from liver I assume). I am going to MD Anderson in Houston in two weeks for a second opinion on my treatment recommendation. I am seeing Dr. Daniel Halperin. Is anyone familiar with him? I did a lot of research on him (and others) and it appears he is doing a lot of trials and research.

Jump to this post