Hi!
I am so sorry you are going through this. I just wondered if you were on Facebook? If so, Neuroendocrine Cancer-Ronny Allen’s Group is a great group as they are in the UK. He also has a Neuroendocrine Cancer FB page as well. Anything and everything you need to know are on this site. He also has a blog and provides the latest information on treatments and what’s in the pipeline. I am hoping you are already a member and also Dr Liu’s Zebra’s A Neuroendocrine Cancer Community is US based, but he has regular monthly FB live events.
I hope you get sorted with getting to a NET Specialist to oversee your journey. All the Best to you!