Has anyone had NETs metastasized to heart?

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.

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.

That is just fantastic! Give him my best wishes for a full recovery. How long was his hospital stay?

The carcinoid heart disease caused a lot of swelling to the point it was putting pressure on his abdomen and lungs. It made it uncomfortable to eat and bc he was on high doses of lasix it caused a lot of constipation. It was causing shortness of breath and he could only sleep in a recliner. He has lost a lot of weight. We were having paracentesis done every two weeks and they were pulling off 10 lbs of fluid. The team wanted him to have at least two Lanreotide shots before the surgery, as they were worried about carcinoid crisis happening from trauma of open heart surgery. They also did a heart Cath and determined there were some blockages and so they fixed those blockages at the same time they replaced the two valves. He was given ocreotide before during and after the surgery. We're ten days out and he's doing great.

@husker1

Oh, I'm so glad to hear of the successful surgery! It must be a relief for him to be feeling better.

If you don't mind sharing more: what symptoms did he have that were relieved by the surgery?

The heart surgery went great. He's already feeling better.

Hi,
His primary is undetermined. It has metastisized to liver, lymph nodes, mesentery, and the fat pad between liver and kidney. He was told he had carcinoid heart disease from carcinoid syndrome. His two right heart valves were like flood gates that were stuck open. The heart tumor wasn't causing any problems and the cardiac surgeon said he might not have touched it except it was right where he was going to cut for the surgery. Our NET specialist doesn't think we will have any surgically removed. The hope is that Lanreotide will stop them from spreading and producing hormones. She has said even though there are multiple tumors they aren't causing him issues. At this point we are trying to get the carcinoid syndrome under control.

Hello @husker1

I appreciate the update on your husband's heart surgery. How is he doing now?

Thank you for replying! I'm sure it was such a shock to find out about the unknown tumor. If you don't mind me asking, do you know the size of the tumor? Where is your husband's primary NET? Did he have surgery for that? Sorry if I'm too nosy...I'm trying hard to make the right, informed decision about my treatment. I have a great NET team at Mayo Clinic Phoenix that I'm waiting to hear from about the myocardial tumor. I think they were consulting with a cardiologist. I hope you and your husband are doing well, and he has recovered nicely from his surgery...it couldn't have been that easy. Take care and God bless you, too!

My husband was diagnosed with NETS and carcinoid heart syndrome in April of 2023. He had double right side valve replacement last week and surgeon said there was a tumor on the heart we were not aware of before. They removed it. I hope you have a great cardiologist and have consultations with a heart surgeon as part of your NETs team. God Bless you!!!