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

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@splendrous

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.

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Replies to "I appreciate your sharing your diagnosis and treatment. I have one doctor recommending octreotide and one..."

I have seen octriotide lessons symptoms and can reduce tumor growth. Mom wll be getting another scan end of November. If it were me i wouldn't be getting the shot. Just monitor.

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."