I am interested in hearing from anyone who may have recently had liver debulking surgery due to mets to the liver? thanks. MKMN
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
Hi @hopeful33250, I had this done as an outpatient procedure. It took two sessions. The first, the right lobe, was more painful but ok after a day or so. The second, the left lobe, was only slightly uncomfortable the first night. Apparently, the right lobe is much bigger so that makes sense. It translates to abdominal pain right below the rib cage. The liver itself doesn't hurt hardly at all. I hope this helps. I'll do a scan in a couple of months to see black (dead) tumors and see if we have killed them all. I can go back in on the ones that are missed. But I'll see after Lutethera treatment, as I still have to conquor the bones mets once the livers mets are gone. I hope this helps!
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I so appreciate you posting about this procedure and sharing this additional information. May I tag you in a conversation if there is another member who might want to post with someone about this?
Can you share your treatment for bones mets?
Thanks in advance!
Hi Maria957, I have tried everything you can think of.
A combination of Afinitor, Anastrozole, Xeloda (low-dose) and Octreotide. It was working for awhile. Then progression began again.
I have a bone ablation for my sacrum area which is super painful right now (heat to kill tumor, then an expoxy-like substance used in joint replacements will take the place of the dead tumor material) scheduled in a week. It worked before, but my spine is peppered with bone mets (I believe 99% are within the bone). They expand as they grow and press on the bone outward and press on nerves, too. You simply can't do this with all of them, just the most painful. It is done by an Interventional Radiologist.
I am hopeful Lutethera works. I'm scheduled for Dec. I'll check in after my first treatment.
Good luck fellow-NETs!
I so appreciate you sharing with @maria957 and the rest of our NETs group how your bone Mets are being treated. You are in my thoughts as you begin the Lutethera treatment.
I look forward to hearing of your progress as you journey with NETs.
Thanks a lot @trivia. I am the best friend of the patient, so I don't know the last update. I am from Argentina and english is my second language, so I am part of this forum in behalf of her. She went to the traumatologist last week and had a scan, so I don't have a feedback yet. I will let you know ASAP.
She is using morphine to kill the pain, and know started acupuncture, this helps a lot. Her oncologist suggested a second round of chemo, yesterday we had a lead for a second opinion. Love from Argentina.
Not recently-removed horizontal lobe December 2003. No material impacts long term.
Hello @jenntx10 and welcome to Mayo Connect. Is it my understanding that you are sharing an experience you have had with liver debulking due to NETs?
If so, please share, as you are comfortable doing so, a little about your history with this disorder. Have you had any other treatments since 2003?
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 . 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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