My husband was diagnosed on December 6, 2007-one day after our 20th anniversary. We have had a difficult time just getting a name for this horrible disease. We have been told it is a Poorly Differentiated Neuroendocrine Tumor with Spinal Mets.
We have completed 20 rounds of Radiation therapy which shrunk the tumor by more than 50% and just started chemotherapy yesterday. We are doing a combination of Temodar and Avastin.
We really like the facility that we are using but there is no specialist for this type of tumor in Utah. How do you go about finding a specialist and deciding the best course of action? We do not feel that we are getting enough answers or direction.
Any suggestions would be greatly appreciated!