Mayo Clinic Connect
Anyone been treated for Carcinoid liver cancer?
@mollie59 Hello Mollie and welcome to Mayo Connect. We have several members in our NET group, some of which do have carcinoid in the liver.I’m going to invite all of our members into this conversation, @amyh2439 @tresjur @joannem @gaylejean @lucci50 @derekd @gulzar @joanney @jenchaney727@dzerfas @lorettanebraska @wordnoid @trouble and @upblueeyes @ahtaylor @heidilynn4 @junebug15 @tomewilson @gman007. I have personally had 3 surgeries for NETs in the duodenal bulb. We look forward to getting to know you. Is this a recent diagnosis for you or a family member? Is there a previous history of carcinoids? Teresa
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A first and no family hisrory
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@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?
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?
@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?
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.
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?
*debulking surgery, not debunking surgery 🙂
Thanks for clarifying, but as fellow “zebras” we all knew what you meant!
Welcome. I have moved your message to the Neuroendocrine Tumors (NETs) group on Connect where you’ll meet many people talking about carcinoid cancer. I see you’ve already met Teresa. She’s a great first connection to make here in the community. I also encourage you to read through some of the conversations in the NETs group. You can see them here: https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/
I look forward to your response and learning more about you.
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Back in 2008 I was diagnosed with carcinoid having a mid-gut primary with liver metastasis. I have been on monthly sandostatin injections since January 2009 and the dosage has changed twice over the 8+ years depending on favorable test results. Years prior to my carcinoid diagnosis I developed heart disease, that is not related to the carcinoid. I understand that over 50% of patients can develop CHD (carcinoid heart disease) but to date I’ve shown
no manifestation of any heart valve lesions. I have had no surgeries and my treatment has been the sandostatin injections only. The injections have minimized my symptoms and kept the progression of tumor spread at bay.
I can definitely relate to your emotional state as I’ve been there dealing with carcinoid and heart disease. I do want to offer you words of encouragement though. As Teresa mentioned, there are many of us “noids” living and thriving with this rare disease. Many of us who have passed the 10, 15 and 20 year mark and living productive lives. Yes, I do suffer from symptoms: diarrhea at times but very well controlled, flushing occasionally, abdominal pain now and then and fatigue, but I am doing well.
You’ve come to a good group for information and support. If I lived near Rochester, the Mayo Clinic is where I would go for treatment. It is my understanding they are a comprehensive cancer center, have cutting-edge technology and offer whole-person care for this rare disease.
Everybody’s journey is different and I wanted to share with you mine. I am hopeful for continued health and thankful for support I’ve received from groups and blogs on this disease.
Please keep in touch.
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