Has anyone had NETs metastasized to heart?

Patrick, you have helped me immensely! I can't believe I found someone else that has this! I feel pretty much the same way you do about surgery, and I'm scared to death of it. They keep telling me I have carcinoid syndrome, but the only symptom I have is diarrhea. which has subsided substantially since April. (Go figure) Everyone I have talked to that had the intestinal/liver surgery has terrible diarrhea, weight loss and can't eat a wide variety of foods. I can't see having the surgery and creating symptoms when all I have is mild diarrhea right now. They suspected the heart tumor in April, but I wasn't scheduled for a Cardiac MRI until last week when they found the 11mm x 8mm tumor in the myocardium. I also had Abdomen MRI, and nothing has changed with the other tumors. I'm so happy to hear how well you've done! I should hear on Monday or Tuesday what the oncologist and cardiologist recommend, and I will make a decision in the next week or so. Oh, by the way I will be 66 on August 26th, and I feel very young...can't believe I'm this old already 😀 And I have too many things to do to be sick. Again, thank you so much for your reply...you really have made me feel much better. Take care of yourself, and I will be sending positive energy your way.

Yes I have had one discovered about two years ago with a heart MRI. It was small and on a repeat MRI a year later there was no change. It is hard to tell how long it has been there, and I am guessing for a number of years. I have had carcinoid and been treated for it for over 20 years with an octreotide regimen for the last 11. I am almost 77 years old. I was advised to look into a new radiological treatment and also surgical removal for the heart tumor. After getting all the information on the Radiation treatment , it seemed unpalatable. As to the surgery, I decided I didn't want my chest cut into and passed on it. Bu here is my situation. My liver has two small tumors and my mesentery also has some small ones for years but they have not grown and are sort of dormant, nor have they spread. I have operated on a very strict calorie reduced diet for years with the octreotide ( elaborated in other responses). I have taken the approach that it is similar to my other carcinoids in growth tendencies. I have none on my lungs either. The problem with the heart one is that it can grow and spread on the heart and cause considerable damage requiring extensive surgery and being more risky in general to bring on a heart attack. I have never had carcinoid syndrome and am still in excellent health with no overt manifestations of it except for the lymph node removal I had to have done because of intestinal blockage about nine years ago. What to do about it is an individual decision and given my age, I feel I can roll with things and do nothing more than what I am doing. But everyone's situation is different and mine has been stable with all my Blood work, MRIs and CAT scans saying things are good. Also my blood oxy is excellent. If I am wrong, well it is on me and even my doctors disagree about it in terms of action or not. I think a lot depends on where you are now and what your age is. Sorry I can't give better advice but I hope it answers your question. I didn't know there was such a thing as a heart tumor either until it was discovered. Good luck.