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.

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