Rare Disease Day Special 2017: Understanding Neuroendocrine Tumors

If you are struggling to get a diagnosis for chronic symptoms like diarrhea, flushing, abdominal pain, fatigue or wheezing, you may want to get tested for Neuroendocrine tumors (NETs). Symptoms vary widely between NET patients and may be confused with Irritable Bowel Syndrome, rosacea, ulcers, Crohn’s disease, allergies or pneumonia. Blood work and urine tests are available, as well as CT, PET and other imaging techniques that can locate and identify NET lesions. New products, such as gallium Ga 68 dotatate for PET imaging have recently been approved by the FDA, and other innovations are on the way. There is a huge gap between the number of patients diagnosed with NETs and the number of people who are living with NETs, but are unaware that they have the disease.