1. < Neuroendocrine Tumors (NETs)

Has anyone had NETs metastasized to heart?

Posted by helloitsme @helloitsme, Aug 4, 2023

I was diagnosed with NETs in cecum, right mesentery, lymph nodes and liver in April, 2023. Today I found out that it has metastasized to the myocardium. Has anyone had this? My surgeon told me today and she will speak to my oncologist and a cardiologist to figure out what to do. She said that I would have to have heart surgery if possible before any surgery could be done on the other surgeries. I’m just wondering if anyone else has had this. I told that it’s very rare.

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patrick031621 | @patrick031621 | Aug 11, 2023
In reply to @helloitsme "Patrick, you have helped me immensely! I can't believe I found someone else that has this!..." + (show)
@helloitsme

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.

Jump to this post

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.

REPLY
patrick031621 | @patrick031621 | Aug 11, 2023
In reply to @helloitsme "Patrick, you have helped me immensely! I can't believe I found someone else that has this!..." + (show)
@helloitsme

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.

Jump to this post

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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