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Where can I find a carcinoid syndrome specialist in Florida?!
Recently I had a positive 5-HIAA urine test and a 64 CU Dotatate PET scan that lit up parts of duodenum and found a 4mm nodule in lung. Had them done at Cleveland Clinic in Weston FL and they said the PET scan was normal! It’s not, so at my request I’m going back there next week to have an upper endoscopy to take biopsies as well and an upper endoscopic ultrasound to look at pancreas, liver and ducts. Since I have classic carcinoid symptoms of flushing, palpitations, weight loss, etc., I’m sure it’s in either the liver and / or lung. I’ve read on this site that it can be missed on even PET scans so hoping the ultrasounds and MRIs will be more helpful. Once I can get a clear diagnosis and localization, I need to find a specialty hospital in FL. Thinking about Moffitt, but I’ve read they are good at GI NETs, but not so much liver or lung. Mayo FL is out of network for me, but I’d pay more if they were better. Wish I could afford to go to an MD Anderson, Mayo MN, PennMed, Clev Clin OH, Dana Farber or Sloan Kettering. But I can’t. This thing has flipped my life upside down at 56. All within the last 8 weeks (probably started long before that, but I never had the symptoms). Any advice, prayers and guidance would be appreciated.
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HugInterested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
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And in response to your question, above, Mayo found my tumor with a MRI, but followed with a fine needle aspiration. I didn't ask what, specifically, can be determined with that, however I would imagine that it could confirm what type of PNET and whether it is functioning or non-functioning. Dr. Brahmbhatt did the aspiration and I believe he is just genius to be able to sample a pancreatic tumor via my throat. Every doctor at Mayo is beyond exceptional: my oncologist Dr. Starr, Dr. Tawk my neurosurgeon and Dr. Quinones-Hinojosa (the subject of a Netflix special), Dr. Stauffer my pancreas surgeon and Dr. Bernet my Endocrinologist-main doctor. All of them spend the necessary time to discuss & explain-Dr. Malavet, anesthesiology, was very thorough and I appreciated the time he spent with me. You can see all of these people and the ones that you will see and know that you will get the best possible care, especially with a NET. They have saved my life.
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2 ReactionsThanks. Was that Mayo Jacksonville?
I also have Carcinoid Syndrome, PET scan shows it started in the small intestines and metastasized to the liver. I’m a patient of Dr Starr, he started treating with Lanreotide, and the flushing continued, he changed it to octreotide and for me it is working ,I haven’t had a facial flush since , on the 26th of this month I’ll find out what effect it had on the tumors. My prayers are with you..
Not sure how far you are from Charleston, SC but they have some of the best NET specialists around. My husband was diagnosed in 2019 and he has a Dotatate Pet Scan yearly. A regular Pet doesn't always pick up NET's. He has a team of Oncologists and surgical Oncologists that specializes in NETS. Hollings Cancer Center which is part of MUSC and his Drs who are part of the Roper St Francis group are awesome. They work with MUSC if something is out of their realm. Such as, my hubs will be starting Lutathera IV radiation this Wed and Roper doesn't provide that treatment... but MUSC does. If Charleston is an option for you know that they are very experienced in NET treatment. Good luck to you and keep us posted.