← Return to NET on liver: Question about treatments when no symptoms

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@patrick031621

I have two carcinoid tumors on my liver and they have been there for many years. I have been on octreotide monthly for over nine years and have had no symptoms. I have just been on octreotide and the only other thing is I watch my diet, moderate eating with limited calories, veggies, a bit of protein and pasta. with no sugar and I don't eat out. I am 78 years old and have had carcinoid tumors for 22 years.
My non-professional opinion is your doctor is overdoing it. Why add Lutethera since you are on octreotide and have no symptoms? I have never taken any pill of any kind for it. If you don't have to deal with carcinoid syndrome which is a whole different deal, a lot of what an individual physician can recommend is overkill. Carcinoids are still generally slow growing. At our age it is more likely that something else will probably kill us (probably from a crash in a car ride driving to get treatment). There are only so many physicians out there that know a lot about carcinoid tumors but they will treat you anyway regardless. Again, being a non-professional, I think just being on the octreotide is good enough if you are not experiencing symptoms. I have been getting MRIs and some CATs to monitor mine all these years and things have been fine. Get a second opinion.

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Replies to "I have two carcinoid tumors on my liver and they have been there for many years...."

Thank you and we feel the same way. Why not monitor at this point. She feels fine and strong. The oncologist got mad yesterday when i suggest just monitoring it.
She had the doctate scan and they cannot find a tumor anywhere else. The biopsy showed k67 p rate of 5%.
She did have a carciniod tumor on lung resection 10 years ago. I wonder if maybe this mastis from that and was just discovered? Her tumor on liver is 4.5 cm but there is only one on liver. They are wanting to do lutathera but we want to monitor.

I appreciate your sharing your diagnosis and treatment. I have one doctor recommending octreotide and one saying just monitor and do regular scans. I thought octreotide purpose was to help with symptoms. At this point I do not have any symptoms. What is your understanding of the value of octreotide in a no symptom situation? How often do you have scans? Have your tumors grown over the years? Thanks for posting.