I am glad that you are aware of your options, @cmhgiddy24. You sound like a proactive person who is engaged in their medical treatment and that is very important. You might also consider attending Mayo Clinic's virtual support group that meets on the first Thursday of each month. It originates from Jacksonville and is facilitated by a Mayo Clinic social worker. There are often guest speakers from Mayo Clinic who speak on various topics related to NETs with a question/answer time and then time for the members to talk about their questions and problems with each other. I'm sure you would find helpful information and also support from that community.

I look forward to hearing from you again. Will you continue to post as you have questions or concerns?