Carcinoid liver cancer/carcinoid heart disease/ kidney damage

Posted by mollie59 @mollie59, Nov 24, 2017

Hi, I am looking for information and advice. On May 25,2017 I was diagnosed with carcinoid liver cancer. However, Carcinoid had already attacked my heart causing a diagnosis of carcinoid heart disease. On Sept. 21,2017 I had open heart surgery replacing the two valves on the right side of my heart. The surgery went as planned, but within the next 1-2 days I went into a carcinoid storm/crisis. My body shut down and because of all the drugs needed to bring me back, I lost complete kidney function. I was on dialysis for 7 weeks. I was very fortunate that my kidney function returned and I am no longer on dialysis. Now that my recovery from heart surgery is 9 weeks out, the oncologist has ordered an MRI to see if and where the cancer has moved. I am frightened about using any dye or contrast as I do not want to injury my kidneys again. I realize they will test my blood and not intentionally use a contrast that could injure them. I am looking for anyone who is dealing with carcinoid cancer who could ease my mind. I am a 60 yr old female

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

Teresa, Volunteer Mentor | @hopeful33250 | Nov 24, 2017

Hello @mollie59

I have been thinking about you, because several months ago you posted about your upcoming heart surgery. I’m glad to hear that the heart surgery went well, but I am sorry to hear about the carcinoid storm/crisis. That is so unfortunate!

I can understand your concern regarding the kidney problem and further testing using dye. Perhaps some other members in our Kidney/Bladder Group could be of assistance to you.

Also, here is an article from Mayo’s website regarding the use of dye and kidney problems, https://www.mayoclinic.org/diseases-conditions/chronic-kidney-disease/expert-answers/gadolinium/faq-20057772

After your read the article you will see that sometimes a lower amount of the dye can be used for the MRI with patients who have had kidney issues.

I hope that your recovery continues to go well and that you will have some peace of mind regarding the kidney problem and further MRI testing for the carcinoid issue.

Teresa

Rosemary, Volunteer Mentor | @rosemarya | Nov 24, 2017

Hi, @mollie59.
I am a liver/kidney transplant recipient. 8-9 years ago, when I became very ill as a result of my failing liver, I remember that I needed some tests that involved dye, too. Please excuse me if my memory is a bit ‘foggy’ but like I said, I was very ill, and things are somewhat jumbled. I seem to recall my medical team in my home state of Kentucky giving me a medication to take either before or after those tests to counteract the effect on the kidneys.
Later when I was transferred to Mayo with acute kidney failure (result of my liver failure), I needed a dye test for diagnosis of possible cancer in my liver bile ducts. I do not remember much of anything at all, except that the medical team was very concerned about the urgent need for a dye test vs the risk of more danger to the fragile kidneys. I do remember the reassuring words of my managing doctor saying, “Don’t worry. We are going to be super careful with you. Everybody has been made aware of your condition. We’ll take care of you.”
BTW – My need for the kidney transplant was not a result of the dye.

I hope that you can find some reassurance from your doctors as I did. I send you prayers for strength as you undergo testing.
Rosemary