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Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Neuroendocrine Tumors (NETs) | Last Active: Oct 31 7:28pm | Replies (113)
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@tomatlanta

Hello. I understand your plight to find the right care. My wife has a grade 2, stage 4 pancreatic Net diagnosed in April this year. We live in Georgia where there is good support for surgical NET treatment but no comprehensive NET program. The approach we took was to meet with a local medical oncologist who specializes in NET (30% of his practice) We then flew to NY for a consultation at Sloan Kettering. Dr. Reidy reviewed her CT, Pet dotatate, labs and conducted a thorough history and physical exam. She recommended a treatment approach that would not have been available as first line in Georgia. Her local oncologist was happy to implement that protocol and has coordinated nicely with Reidy. This approach may work for you at significantly lower cost than going fully out of network.

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Replies to "Hello. I understand your plight to find the right care. My wife has a grade 2,..."
Teresa, Volunteer Mentor | @hopeful33250 | Jun 12, 2023

Hello @tomatlanta and welcome to Mayo Connect's NET support group. I appreciate your response to @pmberman.

Your diligence in finding the best treatment for your wife's NET diagnosis is wonderful! It often involves seeking out a consultation with a NET specialist, like you did, in order to get the best treatment plan possible. Once the consultation is accomplished, then the treatment plan can often be followed up locally with an in-network doctor.

How is your wife feeling now? What type of follow-up is being planned?

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pmberman | @pmberman | Jun 12, 2023

Thank you. I will look into Sloan Kettering. Really appreciate everyone’s support here.

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splendrous | @splendrous | Sep 22 8:00am

I would appreciate the name of your Atlanta dr. I am recently diagnosed w metastatic neuroendocrine carcinoma in the liver. Thinking of 2nd opinion. Looking at MD Anderson or Mayo. Will add Sloan Kettering. What led you to Sloan Kettering. My email is jlrogers200@yahoo.com. Thank you for your assistance.

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