NET on liver: Question about treatments when no symptoms

This is my opinion with the facts for myself. I started octreotide twelve and a half years ago. I believe in it. I had no symptoms at the time and still have none of the syndrome symptoms. I wondered why he wanted me to start but I think some of my blood numbers gave him concern. My tumors have not grown but remain stable. I think a few small ones have made it to my mysentery but to me the key is the liver ones which are totally stable and remain at two and I have none in my pancreas etc... Octreotide greatly reduces human growth hormone and other natural hormones, I have been led to believe. I think for 20% of the individuals who take it, it stops the tumors cold pretty much. Maybe I am in that 20% but itis hard to prove cause and effect on things and it is not touted as a possible cure(they don't disappear) but I wouldn't stop it now, for sure. I get an MRI and blood work every six months and for the last year and a half I have been getting a CAT scan of my lungs because of two small nodules that seem to be relatively dormant that are fairly recent( two years). I will be getting my next ones in November. I personally wonder if the octreotide in restricting hormone release also inhibits the growth or arrival of cancers that have nothing to do with carcinoid. Just a thought. the individual body is a strange thing. I am 78 years old now so to me everything is bonus. I feel fine and I don't think this thing will get me, at least not in the near future. Make sure you know what your insurance or insurances will pay. To me, the sticker price isn't cheap. As you have discovered you can have different opinions from medical professionals on how to handle it. That is the way it is with carcinoid. It still is considered "rare."

I was diagnosed with Grade2 Stage IV metastasized from small intestines to liver. PET scan validated origin. I have been on monthly shots since then. About (1 1/2 years .). Although no new tumors have surfaced a few have shown some growth.. Going for MRI today might be starting Lutathera treatments.. It’s hard to say, but maybe I’d be in the same position if they were just monitoring.. The Ocreotide injections did eliminate the hot facial flashes (Carcinoid Syndrome), which I am grateful for.. I hope all goes well for you..

Same to you. Tough to know exactly what to do.

Hi, I went for whipple in 2020 as found a PNET Gastrinoma Grade1 Functional. In July this year a CT scan revealed several white spots in my liver, My Gastrin has shot up from 200+ to 700+ & my surgeon is concerned and followed by MRI which revealed same. However, GA68 PET scan reveal non specific. An endoscopy was done & removed a polyp which is non cancerous. An ultrasound in the liver was performed but also cannot locate the tumors. Now am refer to oncologist who recommended a follow-up with MRI & Blood test in Dec. No biopsy can be ordered.
Does anyone experience this? Is it true blood tests would reveal earlier as if tumor is either too small or hidden that the scans cannot detect?

Thx for sharing. Did they say if her tumor was functioning or non functioning from the biopsy? My understanding is that non functioning tumors produce no hormones and there are none of the difficult symptoms that many people deal with. Since MD Anderson recommended watching, did they say why they also recommended taking the monthly Octreotide shot and what they expected as a prognosis?

Thanks for your reply. Have you been getting MRI's for the past 1 1/2 years to monitor? How often? Do you know what the dose is of the Octreotide injection you receive? Do you know what your KI-67 score was from your biopsy?
Dr I saw today recommends I start Octreotide due to my tumor grade 2 and KI-67 of 6-8%.

I am trying to understand if there is a predictable time for the Octreotide treatment to work prior to the tumor learning to resist it and start growing. So would there be a benefit to waiting till the tumor started to grow to start treatment. Where are you being seen for your treatment? Thanks very much. Hope the MRI was helpful as you make decisions.

My first MRI was Dec 2022 when I was diagnosed. PET Scan was January 2023 to determine the source. Started Lanreotide injections Feb and March. They didn’t help my carcinoid symptoms so switched to ocreotide on April. Next MRI was June 2023, Nov, 2023, March 2024, June 2024 another PET scan August 2024 and my last MRI October 2024. So kind of started every 5 months. Then more frequent Ocreotide worked great on eliminating my carcinoid syndrome, and stopping the spread of any new tumors but there are a few that we continuing to grow.. I have 16 tumors on my liver. My KI-67 is 6.6%. I receive 2 injections every 28 days to total 60 mg. I am seeing Dr Starr at Mayo Jacksonville Florida. He is a NET specialist.. My last MRI still showed a few growing so we decided to do the Lutathera treatments starting November.. Hope this helps you.. please don’t hesitate to ask any questions. This is definitely an emotional journey, and I’ll be starting the next adventure soon.. Never lose hope!

K67 was less than 5%. Non functional. Thinking shot might slow tumor growth. I dont think MD would be doing shot at this point. Not sure shot level.