Jessica Storms
Starting this journey can be startling, confusing and calls for so much research and finding resources which can assist. Along the way I have found solidarity and strength from others who walk a similar path.

To help with "Having little answers so far" I turned to find a NET specialist with a team of experts. I was able to go to Mayo Clinic . There are other spots too with Specialists who have NET tumor boards and the equipment/testing to use and people to read results well in collaboration.

To help walk me through the information and to provide moral support I have a great Social Worker at Mayo.
I also made good use of the Neuroendocrine Cancer Foundation folks. https://www.ncf.net/
I especially appreciated the one-on- one eight free sessions with a highly trained NET aware Wellness Health Coach https://www.ncf.net/healthcoaching.
There is also a Peer-to-Peer Program with someone you choose who has been through it. https://www.ncf.net/healthcoaching

As for your pondering about symptoms. It had to be determined what symptoms came from the tumor itself (intermittent bowel obstruction which before diagnosis had been described as just old age motility issues) to what came from the Carcinoid Syndrome. I deal with structural symptoms along with both bowel and lung Carcinoid Syndrome symptoms. I suspect that things will become clearer as you find the best resources for you and other NET folks. We are no longer alone.

As for your question : " Has anyone opted out of treatment?" I have not heard of anyone opting out of all treatment but know personally women who have opted to choose comfort care alone and did so with the support and understanding of working with Palliative Care and/or a Serious Illness Therapist and later with an end of life Doula. But here is the thing, while well prepared, they have found resources which have kept them going and appreciating their days.. and outliving initial expectations.

Wishing you well with your exploration and that you may feel others who "Get it" with you.