I was diagnosed in 1993 by a doctor who performed a colonoscopy after heavy rectal bleeding. He had just read an article on neuroendocrine tumors of the small intestine and referred me to an oncologist who had been a student of Dr. Charles Mortel at Mayo. Mortel had studied these tumors for over 25 years and was the world expert at the time. I had a right colectomy [approx 10 inches], removed the primary tumor by the cecum, an atrophied appendix and several abdominal lymph nodes, then transferred to Mayo. In 2003, I had the left lobe of my liver removed [Mayo], the right lobe resected [w/later ablation to clean up some areas] and an atrophied gallbladder removed. In 2014, I had a bile duct stent inserted after extreme itching and pale feces. In 2018, I had my first series of Lutathera [primarily to address liver mets] with the second series completed earlier this year [2022]. Blood counts were affected but eventually returned to almost low normal levels. I started Octreotide late 2014 and later moved to Lanreotide, Zometa and pancreatic enzymes to facilitate improved digestion. Bone mets appeared approximately 2+ years ago. Received a radio isotope treatment for a Cervical lesion. Largely asymptomatic considering everything and normally have stable numbers.

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