← Return to NETs: Anyone has Liver debulking for liver metastasis?

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@jenntx10

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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Replies to "I was diagnosed in 1993 by a doctor who performed a colonoscopy after heavy rectal bleeding...."

Hello @jenntx10,

I appreciate you providing additional information about your NETs journey. You have certainly been proactive in finding good specialists and following up with the latest treatments.

You indicate that you are "largely asymptomatic." That is good news. Are the meds and pancreatic enzymes helping you?