You've already receieved some great advice and guidance from others but I'll throw in my 2 cents worth. There are net specific organizations that will provide you with a wealth of information in preparation for your follow up visits. In addition to NEC, there is NETRF.
http://www.netrf.org
They have a patient resources section including a Newly Diagnosed section that will guide you in what to expect and questions to ask at your appointments. They also have a state by state directory of net specialists, but if you're going to City of Hope in Duarte you'll be in great hands. But there are several specialists in California so second opinions are possible and actually a good idea given the complexity of your symptoms.
That site, like the other one recommended also has tons of informational videos.
Some additional advice: It sounds like you're being super proactive and that is great. Learn all you can about this disease before your appointment so you can make the most of it. Educate yourself enough to know if what any doctor tells you makes semse. Do not be afraid to ask questions
Be prepared to be your own best advocate regardless of the skill and knowledge of any doctor you see.
As to opting out of treatment, I've seen that as an option when the nets are confirmed to be very slow growing and non aggressive and aren't creating any problems.