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DiscussionWondering if we are making the right choices in our NET fight.
Neuroendocrine Tumors (NETs) | Last Active: Dec 28, 2024 | Replies (9)Comment receiving replies
Replies to "Wondering How old is your wife? How big and how many tumors? How is the Nets..."
She is 59 years old, still works part time. She started with too many tumors to count when originally diagnosed in 2022. She was Stage 4, but with a slow growing tumors. After chemo (pills), surgery to remove primary on pancreas, remove spleen, and debulk some of the tumors they could, we then moved to 3 cycles of PRRT, which PET scan showed that she was roughly 80% less tumors than started. I believe her largest tumor was about 2 x 4 cm. She currently has about 8-10 tumors in her liver only still that are stable for now. She was just added to the liver transplant list that we have decided to do after many 2nd opinions. It is a rare option for NET patients, but we trust our medical team. To better answer your questions, she is a type 1 diabetic, which truthfully is more of issue on a daily basis, since the bottom tail of the pancreas was removed. My best advice you will hear from many in this forum, whatever you do make sure that it includes a NET specialist, as we even found out in the beginning, NET is rare, that even our oncologist only had 2 cases in his 40 year career, so he immediately referred us to a multi-disciplinary team at Froedtert Hospital that included a NET Specialist, which has given her a great chance to managed NET for hopefully many years! We all got this, and let us know how we can help you.