Is it common to start on Lanreotide with no known tumors?

Posted by patrick000 @patrick000, Jun 11, 2023

Hello, brand new member here. Hoping to tap into the group's wisdom!

In January I was diagnosed with a GI-NET (terminal ileal, well-differentiated, grade 2, margins negative)

Luckily, CT and PET scans didn't turn up metastatic disease. Last month I had surgery to remove the tumor. Surgery went well.
The surgeon also removed 35 lymph nodes, and the pathology report indicated that 3 of them had tumor present.

When I went to see my oncologist this month, I was expecting to discuss monitoring for reoccurrence. Instead, I was told he was setting up a schedule for monthly Lanreotide injections. Anyone else start on Lanreotide post-surgery without known disease?

I did find an article on the NCBI website that said that "...NCCN guidelines, which represent a de facto standard, do not recommend adjuvant therapy for patients who undergo complete resection of a NET, regardless of subtype or grade."

Is there something that I am missing?

Any insights greatly appreciated!

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

alisonn | @alisonn | Jun 12, 2023

My brother's medical oncologist did not put him on Octreotide (that is what his office uses) after his surgery. He said the same thing your guidelines said. I kind of wish he had been on it though, as he has had issues with tumor growth and I wonder if he had started right away if that would have helped with that.

kim1965 | @kim1965 | Jun 12, 2023

Of course I’m not a doctor, Kim’s case is after 9 months of chemo, she had surgery on mass on pancreas, removing tail of pancreas , spleen, and debulk as many tumors on liver as they could get. So after 80% reduction in tumors from chemo/Lanreotide injections, the surgery got everything around pancreas, but she still has molecular tumors too small to see in liver. Our cancer team plan has been to continue Lanreotide until we get two 90 day rechecks which are clear, then they will consider removing the right lobe of liver where the remaining molecular cancer is left. The cancer team didn’t want to stop the Lanreotide after surgery cause it had worked so well, and it helps keep the remaining NET in her body hopefully not growing. Hope that helps and gives you some good questions to ask your team about. Let us know how we all can help you! We all got this!