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Has anyone had NETs metastasized to heart?
Neuroendocrine Tumors (NETs) | Last Active: Aug 11, 2023 | Replies (12)Comment receiving replies
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.
Replies to "Patrick, you have helped me immensely! I can't believe I found someone else that has this!..."
I am very sorry I lost my detailed reply to you. Some of what you have shared here sounds a bit like where I was nine years ago. Am I misreading or did you have the resection surgery ( which I had then)? If so I will try to repeat what I wrote and tell you what I learned through trial and error about carcinoid, diet, etc....if you wish.
I hate repeating myself on things as I don't want to bore, but sometimes it can't be helped in order to make writing flow smoothly. Besides one forgets what one said before.
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I wrote you a very long detailed reply to help you and some how it got wiped out. I will give this very short observation instead now. First off the key is do you have carcinoid syndrome? You sound a lot like my situation 9 years ago. It gets down to diet and finding out what you can eat and avoiding sugar and keeping your calories down and doing protein and vegetables. I don't have the syndrome. My weight is slight and I don't gain but I haven't lost strength even though I am skin , bones and muscle. My heart tumor is 1.5 cm x 1.4cm (larger than yours) but I am doing nothing about it and my advising surgeon has no problems with that. I have had a repeat heart MRI and there has been no change just like my other tumors. The heart carcinoid was discovered about three years ago. I am sorry the very detailed reply was lost on this site but maybe this helps you. I am in great shape with no heart or lung issues showing up. Keep in mind that I am about 77 and my heart tumor was discovered three years ago with a repeat one showing no change in size or any spread. None of my others have changed at all in years which adds to my decision to avoid heart surgery.