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Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver
Neuroendocrine Tumors (NETs) | Last Active: Apr 15 10:57am | Replies (80)Comment receiving replies
I have pancreatic neuroendocrine tumor with liver metastasis. It is grade 1. I am scheduled for surgery but often consider canceling. The goal of the surgery would be “ cytoreduction. This would entail a distal pancreatectomy, splenectomy, cholecystectomy, wedge resection and ablations of the liver.” I understand that to mean they would remove the tumor in the tail of the pancreas, remove and ablate some tumors in my liver and also remove my spleen and gall bladder. If I do not do surgery, the other option is to do monthly hormone shots which I was told are effective for 3 to 7 years. Any advice would be greatly appreciated.
Replies to "I have pancreatic neuroendocrine tumor with liver metastasis. It is grade 1. I am scheduled for..."
I forgot to say I am 67 year old man.
I’m sorry you’re going through this. My husband had the same surgery except for the liver debulking and treatment 15 years ago. He had a very large liver tumor burden that was later addressed very successfully with radioembolization. In my opinion, with the surgical options they’re giving you this surgery will likely set the clock back for you many many years, as it did for my husband. Sandostatin and lanreotide usually only stall the growth with minimal shrinkage. However, grade 1 is very slow growing so there is that to consider.
Is the surgical approach being suggested by a net specialist? If not (and even if it is) I’d strongly encourage a second opinion from another net specialist. It’s always good to get a consensus on the approach as it is a big surgery. Here’s a link where you can find specialists by state.
Best of luck to you.
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
@marct
First of all, I can only tell our story which is very similar. My wife was diagnosed with NET stage 4, with mass on pancreas that spread too many tumors to count on liver. We thought the worse at first, but research and our oncologist calmed us down referred us to a multi disciplinary team including a NET specialist (critical need)to help us. She had to do 9 months of chemo as her mass and tumors were not operable at diagnosis, so I believe you well ahead of us, being able to have surgery right away. After 80% reduction in all tumors from chemo, we had surgery March 23, and had the same surgery your having. We got everything out except all of tumors on liver. Currently, doing PRRT radiation treatments to keep the NET in liver at low amount and our team is considering a liver transplant if PET scan is still clear with the exception of the liver. This will hopefully reset our diagnosis to a decades potential lifespan. I could help with other questions, but be an advocate for your health and ask lots of questions of your team, and do read and research. We in the forum got your back, and will help you through this as we been through this and hopefully can give you ideas to make this a bit easier for you to work through. You got this!🙏
I was diagnosed with stage 4 pancreatic NET with liver metastasis in 8/22. I learned what innumerable meant as it was used to describe the lesions on my liver. I took captem for 13 months. I am on my third month of just capecitabine. My pancreatic primary is about 1/3rd of its original size and my liver lesions are almost gone. I will be on capecitabine for the foreseeable future.
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