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.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

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.

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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.

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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glbrent | @glbrent | Nov 8, 2024

Anyone with a NET in right hilar that metastasized to heart?

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2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 12, 2024
In reply to @glbrent "Anyone with a NET in right hilar that metastasized to heart?" + (show)
@glbrent

Anyone with a NET in right hilar that metastasized to heart?

Jump to this post

Hello @glbrent and welcome to the NETs support group on Mayo Connect. I see that you have metastasis to the heart. What type of treatment is being planned?

We have one discussion group with members who discuss this topic. Here is the link,
https://connect.mayoclinic.org/discussion/has-anyone-had-nets-metastasized-to-heart
How was this diagnosed and how are you feeling?

REPLY
glbrent | @glbrent | Nov 12, 2024
In reply to @glbrent "Anyone with a NET in right hilar that metastasized to heart?" + (show)
@glbrent

Anyone with a NET in right hilar that metastasized to heart?

Jump to this post

The treatment is Capox. Just finished first round. Had a routine (but delayed) CT scan and the tumor was found in the right hilar but has since metastasized to the heart area. Unable to get biopsy due to location but had 2 blood clots in each leg that had to be surgically removed and they were able to get biopsy from it due to cancer cells in the clot.

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 14, 2024
In reply to @glbrent "The treatment is Capox. Just finished first round. Had a routine (but delayed) CT scan and..." + (show)
@glbrent

The treatment is Capox. Just finished first round. Had a routine (but delayed) CT scan and the tumor was found in the right hilar but has since metastasized to the heart area. Unable to get biopsy due to location but had 2 blood clots in each leg that had to be surgically removed and they were able to get biopsy from it due to cancer cells in the clot.

Jump to this post

I appreciate the added information about your diagnosis, @glbrent. It is quite interesting that they could obtain a diagnosis from the blood clots in your leg.

How do you feel? What type of symptoms are you experiencing?

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1 reply
glbrent | @glbrent | Nov 14, 2024
In reply to @hopeful33250 "I appreciate the added information about your diagnosis, @glbrent. It is quite interesting that they could..." + (show)
@hopeful33250

I appreciate the added information about your diagnosis, @glbrent. It is quite interesting that they could obtain a diagnosis from the blood clots in your leg.

How do you feel? What type of symptoms are you experiencing?

Jump to this post

Feeling pretty good now. No symptoms really. Was nauseous twice but nothing major.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | 14 hours ago

For all of those who have been diagnosed with carcinoid heart problems, please register for an upcoming NETs Support Group that will be meeting next Thursday. Here is the information:

Support Group Meeting
Thursday, February 6, 2025, from 5:30 pm-7:00 pm EST
With Guest Speaker: Dr. Heidi Connolly, Mayo Clinic Cardiologist
Presenting on Carcinoid Heart Disease
Location: Virtual (Zoom)

Please register in advance for this meeting as space is limited to 50 participants:
https://mc-meet.zoom.us/meeting/register/tJwkf-ivpz4jG9aqLYrH43Nl-mHPpWp-RBuf
After registering you will receive a confirmation email containing information about joining the meeting

For Questions or Concerns please call 904-953-7266
Loriell Grossling, LCSW, OSW-C, MSW
Oncology Social Work, Section of Social Work
Phone: 904-953-7266; Fax: 507-422-0920
Email: Grossling.loriell@mayo.edu

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | 13 hours ago

For anyone who is diagnosed with carcinoid heart problems, please register for an upcoming NETs Support Group meeting next Thursday. Here is the information:

Support Group Meeting
Thursday, February 6, 2025, from 5:30 pm-7:00 pm EST
With Guest Speaker: Dr. Heidi Connolly, Mayo Clinic Cardiologist
Presenting on Carcinoid Heart Disease
Location: Virtual (Zoom)

Please register in advance for this meeting as space is limited to 50 participants:
https://mc-meet.zoom.us/meeting/register/tJwkf-ivpz4jG9aqLYrH43Nl-mHPpWp-RBuf
After registering you will receive a confirmation email containing information about joining the meeting

For Questions or Concerns please call 904-953-7266
Loriell Grossling, LCSW, OSW-C, MSW
Oncology Social Work, Section of Social Work
Phone: 904-953-7266; Fax: 507-422-0920
Email: Grossling.loriell@mayo.edu

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