Neuroendocrine Tumor

Posted by @flowerpower @nikiglen, Aug 11 11:33pm

I have been diagnosed with a neuroendocrine tumor 6 months ago. It started in my upper small bowl and had spread into lymph nodes. The tumor was surgically removed. However, I have so many questions about the fact that it had already spread to my lymph system. Does that mean that it could spread using my lymph system?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Profile picture for Sol @solaviera

Hi there,
I'm new here. Doctors diagnosed me with a neuroendocrine tumor in the terminal ileum with metastases to the liver at the beginning of this year. My surgery was in March. They removed the tumor along with some lymph nodes that were compromised and my gallbladder. Unfortunately, they could not debulc my liver nor resect it. I started the Lanreotide injections in April, and as per my recent CT scan, there are no new growths -except for a tiny one on the same spot the previous one was located- and things are staying in place. Although now I have a fatty liver. I'm not a drinker, nor I eat greasy food. Has anyone experienced this problem?
Thank you.

Jump to this post

Yes, I have had a significant increase in fatty liver over the course of a year of liver MRI’s. I am on Octrotide injections. I do not drink but I gained 40 pounds after my diagnosis. My oncologist thought I might die of fatty liver before cancer so I saw a liver specialist at Mayo. I have a genetic metabolic dysfunction associated steatosis hepatitis. My sister has the same and advanced to cirrhosis at age 61. My brother died of this at age 68. Neither one drank alcohol. There is getting to be a higher occurrence of this because of obesity. I am 67 and the good news is liver doctor says I can reverse this if I lose 40 pounds and keep it off for at least 4 years. Wish me luck- I am almost down 20 pounds. I like to say I am the only person who gains weight with cancer.

REPLY
Profile picture for Turkey, Volunteer Mentor @tomrennie

Hi @solaviera. Welcome to Mayo Connect. Sometimes fatty liver just happens. I pulled this from Mayo's website:

Nonalcoholic fatty liver disease, often called NAFLD, is a liver problem that affects people who drink little to no alcohol. In NAFLD, too much fat builds up in the liver. It is the most common form of liver disease in the world. A move is currently underway to change the name nonalcoholic fatty liver disease to metabolic dysfunction-associated steatotic liver disease (MASLD).

For me, cancer in my liver definitely contributed to the diagnosis. I hope this helps you from continuing to break your brain over this. Others are taking this journey with you. Any other concerns that us patients and caregivers may be able to share our experiences about?

Jump to this post

Hi,
You are so sweet! Thank you for this information. I read something similar, but it was more related to the pancreas dx (not my case). I am very pleased you sent this to me!
Thank you and a big hug!

REPLY
Profile picture for Nancy VanHauen @vanhauen

Yes, I have had a significant increase in fatty liver over the course of a year of liver MRI’s. I am on Octrotide injections. I do not drink but I gained 40 pounds after my diagnosis. My oncologist thought I might die of fatty liver before cancer so I saw a liver specialist at Mayo. I have a genetic metabolic dysfunction associated steatosis hepatitis. My sister has the same and advanced to cirrhosis at age 61. My brother died of this at age 68. Neither one drank alcohol. There is getting to be a higher occurrence of this because of obesity. I am 67 and the good news is liver doctor says I can reverse this if I lose 40 pounds and keep it off for at least 4 years. Wish me luck- I am almost down 20 pounds. I like to say I am the only person who gains weight with cancer.

Jump to this post

I'm petite, and so far I'm keeping the same weight throughout the treatment. My oncologist wants me to see a hepatologist about the fatty liver. We shall see what comes out of that. I'm wishing you all the best and keep us posted! One day at a time!
Hugs!

REPLY
Profile picture for Sol @solaviera

Hi there,
I'm new here. Doctors diagnosed me with a neuroendocrine tumor in the terminal ileum with metastases to the liver at the beginning of this year. My surgery was in March. They removed the tumor along with some lymph nodes that were compromised and my gallbladder. Unfortunately, they could not debulc my liver nor resect it. I started the Lanreotide injections in April, and as per my recent CT scan, there are no new growths -except for a tiny one on the same spot the previous one was located- and things are staying in place. Although now I have a fatty liver. I'm not a drinker, nor I eat greasy food. Has anyone experienced this problem?
Thank you.

Jump to this post

Yes; fatty liver showed up on scans/labs following cytoreductive/debulking surgery for GI mets & now on Octreotide shots. Wondering if this is due to having gallbladder removed & liver resection.

REPLY
Please sign in or register to post a reply.