Has anyone had NETs metastasized to heart?

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.

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.

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!!!

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!

Hello @husker1

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

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.

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

@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 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.

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