Carcinoid liver cancer/carcinoid heart disease/ kidney damage

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

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

Thank you so much, prayers to you

@mollie59, I'm just wondering how you are doing now that it has been several years since the heart surgery. My husband is waiting to be scheduled for the open heart surgery due to carcinoid heart disease, and we just learned about the carinoid tumors within the past month. It's all been overwhelming, and looking for someone that has experience to reflect on.

Hello @husker1 and welcome to the NETs Support Group on Mayo Connect. I can certainly understand that you are looking to connect with others to gain support during this time. NETs is a rather rare form of cancer and it can be confusing as well as frightening to be faced with surgeries.

If you care to share more, I would be interested in knowing what symptoms led to the discovery of NETs? Also, is your husband being seen by a NET specialist?

Hi @hopeful33250. Our story is a lot of drama so far. Around Christmas my husband had swelling in the legs, and saw our GP who referred us to a cardiologist. The Cardiologist did the regular tests and didn't find anything. The swelling moved to his adomen in March, and just before getting referred to another cardiologist for a second opinion, he had a ultrasound which showed lesions in the liver. A CT scan followed showing masses in the mesentary, pelvis, liver, and around the kidney. It also showed swollen lymph nodes, fluid around the heart and lungs, and ascities. The scan suggested carcinoid tumors. There was no indication of where the primary tumor may have started. Our GP told us to travel to Jacksonville to Mayo and told us that he would get us in to be seen by specialists. We left the day after the results of the CT scan on his advice. We got to FL and Mayo wouldn't take us because we didn't have a tissue/biopsy. They scheduled us in the undiagnosed mass clinic, but they called and cancelled and said that we didn't qualify there. We went to a regular cancer clinic in FL, who referred us to a gastroenterologist in FL, who we saw and wanted to refer us on to someone else, and we got fed up and came home. Everyone said we needed a biopsy, by no one would order it or do one. No one would biopsy because of the issue of the primary tumor location being undefined. After two weeks, we came home to Nebraska, and per our persistance our GP ordered a biopsy which was done at the U NE Med Center. UNMC also originally wouldn't take us, but I think I called enough and finally talked to the right nurse who pulled some strings. We all knew the biopsy wasn't the primary, but it got us in the door. The biopsy got us seen by an oncologist, who diagnosed him with Carcinoid Heart Disease. She said our next step is to have the right valves replaced, and we see the cardio dr. in ten days for more tests. His symptoms were primarily the swelling. In the past few weeks he has started experiencing fatigue and a lot of bloating. Our oncologist specializes in gastrointestinal malignancies. I don't know if that includes neuroendocrine tumors. Our experience has been extremely frustrating, and we've seen seven doctors now, in two states, but only long enough to run more tests and send us to someone else. I don't know the protocol on how this works, but I am pretty certain, this ain't it.

I can certainly understand your frustration, @husker1. This has been quite a journey for you with more than your share of closed doors. I'm glad to hear that you were finally able to get a biopsy done to verify the presence of NETs.

I look forward to hearing how your appointment with the cardiologist goes. Will you post again as you have questions and concerns?