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Liver transplant and Neuroendocrine Carcinoma
Has anyone else been diagnosed with Neuroendocrine carcinoma cancer that has also had a liver transplant in the past? If so, I’d love to hear your story and how long ago you were diagnosed and how you’re doing now. And also which doctor/cancer center you go to that specializes in people with transplant and NEC. I’m having a hard time finding a doctor that specific. Was recently at MD Anderson, but I need a doctor who specializes in liver transplants and NEC.
12 years post liver transplant and was recently diagnosed with stage 4 cancer in March of this year. I’m 33 years old.
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Wow! What a journey you've been through. I'm so sorry that you now have to deal with a NEC diagnosis. Was your transplant cancer related?
While I don't have personal experience with your situation, I think you would want to seek follow up with a medical center that specializes in both liver transplantation and neuroendocrine cancer. Mayo does as does Moffitt and U of Chicago. I hope you find the guidance that you're seeking.
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2 ReactionsThank you! My liver transplant was due to an autoimmune disease called PSC. This is my first cancer diagnosis. I have a 3 year old daughter so I’m just trying to find somewhere that has better answers than what I’ve received. I requested an appointment with Mayo but I will also look into those other ones. My current cancer center is in Seattle and they just don’t have all the resources like some of the other larger places. Thank you 🙏🏼
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3 ReactionsYou're very welcome. Like liver transplantation nets, especially high grade NEC really requires a specialist. If you want more net resources, you can find a list of specialists at http://www.carcinoid.org and http://www.netrf.org.
If you're in Washington, you can look into Stanford in N California as well. They have great net specialists.
What a situation
There is a transplant team in New York st Mount Sinai Hospital it is also a NEC team
The liver specialist is Dr Schwartz and Dr Wolin is the NEC specialist they work together very well
Look them up
Wishing you all the best
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1 ReactionThank you! Really appreciate it!
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1 ReactionThank you! I will look into this as well
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1 ReactionI highly recommend Dr Wolin if you’re in the northeast. He has treated nets exclusively for decades and is one of the best. We credit him with saving my husband's life when he was with Cedars in LA many years ago
Please do they are a great team of NEC doctors they did my liver resection surgery and take care of my NEC issues
Also if you have to travel reach out to the American Cancer Society they are wonderful with helping you get lodging and travel for free or at a reduced rate
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1 ReactionI have not had a liver transplant but was diagnosed with NETS this April and I already have a severe congenital heart defect. Now they are saying I will need a heart and a liver because so many tumors in the liver. I am followed at NYU and they know about NETS and the liver transplant surgeon seems great as well.