Neuroendocrine Tumor

Good morning, my primary is also my small intestine, and it spread to my liver. Diagnosed about 3 years ago, started monthly injection.. There are so many different stories and strategies on this web site I have read.. All unique to the persons overall medical condition.. I haven’t had any surgeries and the tumors have not spread.. The most important thing is that you are seeing a Neuroendocrine specialist.. There are different types of procedure and treatments for this type of cancer.. Hope you get the answers you are seeking..

@flowerpower: Hi there! My diagnosis is like @vinnie694 at about the same time, so won’t repeat it. I concur with his advice to you.
Our type of NET cancer is different from other cancers in many ways: we usually have very slow growing tumors, we can have “spread” to any endocrine cell at microscopic level (imagine little bitty seeds released into bloodstream), we are lucky to have many treatments that shrink and control growth of tumors, and we have NET specialists who understand how our cancer cells react differently to be able to treat them with the best possible treatment; plus research is working on more options to give us in the future!
We also have Mayo Connect peers who have personal experience with what you are having! Thinking about the positives really helps, but we NET patients understand the shock and gut renching fear that this diagnosis delivers too! The more you research and learn about Neuroendocrine Tumor Carcinoid cancer (NET/NEC) the better you will adjust and make decisions. This HUG’s for YOU!
Best health… dbamos1945

How was your cancer discovered? Do you know the grade of your NETs? I'm in the same boat as you except I had my surgery just over 2 years ago. I'm getting a Lanreotide shot once a month and every 6 months I have a PET scan to assess any changes since my last scan. If your NETs is well differentiated (slow growing), you might do well with the same or a similar strategy. Other, faster growing NETs may require a different approach. All Neuroendocrine cancers are not the same. Good luck to you.

I also concur with all of the above responses; I’m on year 3… Mine started as a small bowel obstruction & pathology showed NETS. Had bowel resection & was good (or so I thought) for 1.5 yrs. Dotatate Pet scan showed recurrence & metastatic spread to liver, gallbladder, diaphragm, peritoneal lining, cecum, appendix. Had a major cytoreductive/debulking surgery that was rough to recover from & immediately started monthly Octreotide Injections. Nine months later my latest CT followed by Dotatate Pet scan showed the previous areas are clear except for one new small area in lower colon & I’ve been referred to have PRRT. I’ve never felt sick one day in the last 3 years (except for surgery recovery); still enjoy life, activities & feel blessed. I wish you the best on your journey! This group is great support system.

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.

Sol, fatty liver seems to be a common problem. I apparently have it as well. I don't drink. It was mentioned on my latest PET scan. I'm on monthly Lanreotide also. Probably losing some weight would help in my case. I don't really have any symptoms.

I just had a PET scan Wednesday and in the test results I was also diagnosed with fatty liver..

Hi!
Thank you for your comment. I'm petite, and I think I'm going to change my diet a bit to see if that can help my case. I'm wondering if the injection itself can give us fatty liver or the cancer is the actual culprit. My lipid panel came back within range.

Hi,
Any word about why you have a fatty liver? Any idea? I'm breaking my brain trying to understand why this is happening. I hope we get answers soon.
🙂

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?