A first and no family hisrory

@mollie59 As you probably know already, carcinoids or NETs are rather rare. I certainly recommend that you go to a large university medical center and/or to a Mayo Clinic location (Rochester, MN would probably be the best) for treatment suggestions. Have you been evaluated with an 69Gallium scan? (see https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/) I have personally met many people with liver carcinoids who are living productive lives 10 - 15 years after diagnosis. Generally, they are treated with a monthly injection. How long ago were you diagnosed? Has your doctor offered you any treatments for your liver carcinoid?
Teresa

I learned of my carcinoid in May,2017; After having symptoms of severe exhaustion, diarrhea, no appetite, weight loss, brain fog, and ankle swelling slowly getting worse over a 2 year period. I was diagnosed after having swollen ankles and calves, which they discovered a heart murmur. I was transferred from my my small outstate hospital to the cities. This is where I was diagnosed with Carcinoid Heart Disease, which carcinoid cancer in some patients attacks the right side of your heart. I am currently having an injection of sandostatin every 28 days. This week I have appointments at Rochester Mayo with cardiologists and oncologists. I have been told the goal is to get the cancer under control before repairing the heart valve. Looking forward to my appointments with mixed emotions.

@mollie59 I can certainly understand your mixed emotions regarding your upcoming appointments, but I am so pleased to hear that you will be seen at Mayo. They have done a lot of work with NETs and have state-of-the-art technology. Will you follow up with us and let us know how you are doing after you are seen at Mayo?

Teresa

Yes

@mollie59 Look forward to hearing from you. Teresa

Hello @mollie59. I am in your same boat. Diagnosed in Feb 16, disease under control and now referred for Carcinoid Heart Disease. How are you doing and how did your appointment go?

Hello @cjohn and welcome to Mayo Connect's discussion on Neuroendocrine Tumors/Carcinoid. I am sorry to hear of your diagnosis of Carcinoid Heart Disease. I am a volunteer mentor of this discussion and I have personally had 3 surgeries for NETs and while I have some heart problems, they do not represent Carcinoid Heart Disease.

We look forward to getting to know you better. If you are comfortable sharing more about yourself, please provide us with a little more information about your history with Carcinoid. Have you had any surgeries or other treatments? Do you have symptoms of Carcinoid Syndrome? How are you feeling?

Teresa

Hi. My primary was found in the terminal ileum. Metastasis to nodes, liver, and other organs.i had debunking surgery in Feb 2016. I'm on Sandostatin LAR every 28 days a week ago, I have an echocardiogram. Damage to valves is leading me to a consult with A Cardiologist at Mayo. I'm forever thankful that I'm able to obtain amazing care at Mayo Clinic. Im feeling great all things considered. I don't really have any reactions to my injections that are really worth mentioning. I'm just so thankful.

Hello @cjohn

I am glad to hear that you are doing well post-surgery and with the Sandostatin treatments.

I have heard wonderful things about the cardiologists at Mayo, they are known throughout the country to be the best in dealing with Carcinoid heart disease. Doctors who specialize in NET/Carcinoid issues always recommend Mayo to patients with Carcinoid heart disease.

Is your cardiologist appointment coming up soon?

Teresa