Neuroendocrine Tumors: How many people get them?

Overall, Neuroendocrine Tumors (NET) are seen in a variety of organs. My tumor, just happens to originate in the Thymus, which is very rare, even for a NET. Less than 1% of NET are found in the Thymus. The overall occurrence of NET's in the population is 2-4 per 1000 people. If you work this math out, about 20 to 40 people in the United States will get a NET originating in the Thymus each year, a very select group.
The problem with this is that there are not enough patients with this type of disease that any major medical centers or doctors can get experience with the tumor, so there really isn't a standard of care like you have with Breast, Lung, Colon and other cancers that have a much larger patient population.