Sounds as if your medical team has caught this before it forms into the tumor and is doing preventive treatment with the Lanreotide and hopefully continued close monitoring. An AI response would read " Based on your description, these findings describe a pre-cancerous or pre-invasive condition where neuroendocrine cells (cells that release hormones in response to nervous system signals) are multiplying and showing abnormal changes, but have not yet formed a distinct, solid, or invasive tumor ".
I do not think the condition you describe is rare for the NET community but it is rare to catch it and treat it with Lanreotide before seeing a tumor on a scan. I am sorry you have the symptoms. They can be awful, but it is good to see that you have been believed with your symptoms and received the needed testing. Sounds as if you have done some strong self advocacy to achieve a diagnosis and will continue to do so.
Thank you for explaining your situation, for I have often thought that years before the NETs landed and formed into a tumor, I had the symptoms. Your example helped.