We (my wife who has NETs) and I definitely write notes/questions before an appointment. If there are questions between appointments we do use the patient portal which is very helpful. The entire team at Mayo is very responsive to questions asked. We don't abuse the portal with silly questions. I keep a detailed diary of who said what to whom about what and when. A lot of the diary has to do with insurance companies as my wife is not on Medicare and we've had so many excuses from insurance on non-payment of items. It becomes draining all the follow up that is required. I've mentioned this before, we audio record each visit (app on phone) and I upload it to YouTube (private) so our kids or whoever can hear it first hand if they wish. One of our daughters is a P.A. who interned at Mayo. We are not shy and I doubt anyone on here is either. As the saying goes... "you have to be your everyday doctor". No one cares more about your health more than you. Its hard to imagine what life was like with a disease like NETs before the internet and forums, etc. Patients were each on their own little island.

By the way, anyone else going to Univ. of Iowa for the NCAN patient conference a week from today?

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