Carcinoid Cancer of the Liver

@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

Hi Mollie,
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.

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 Mollie,

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.

thank you for your words of encouragement, my appointments begin at Mayo on the 20th with the cardiologist and next week with the onlcology department. So your reply to me came with perfect timing. By all of the good things i hear, Mayo is an excellent place to be. Again, thank you so much.