Hi Anita,
Thanks for your story. And sorry, but welcome to the “club”.
Sounds like you have been through quite a bit since March. I am not sure if you are seeing a NET specialist but if not, I would encourage you to see someone who works with NETS all the time. They generally can guide you in the latest NET treatments.
My story started in 2013 when a lime size tumor was found in my colon, near the ileum, blocking my colon and causing pain. Surgery followed with the diagnosis of nets to liver, mesentery, and lymph nodes. I continue with monthly injections of Lanreotide. Every 8 months I get updated scans and I am thankful that my remaining tumors are stable – no growth in 12 years.
You mentioned the K scale… From what I understand, Ki-67 determines the growth rate of a tumor. The lower the better…in my case my Ki-67 is 1%.
In fact, my stats after diagnoses were (with my understanding of these stats in brackets)
Well differendiated (may not spread quickly), Grade 1 (slow growing), non-functioning (does NOT secrete hormones), low volume (small tumors), Ki-67=1% (low on scale of aggressiveness), mitotic count - 1 per 10 (measure of cell division-lower better)
Hang in there, and keep learning. Tim