← Return to Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Discussion
Comment receiving replies
@kim1965

@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!🙏

Jump to this post


Replies to "@marct First of all, I can only tell our story which is very similar. My wife..."

@kim1965
Excellent advise!! Being your own, well educated advocate is the best advise! That’s what saved my husbands life 15 years ago when a highly regarded net specialist rejected all forms of treatment and told him to get his affairs in order. Thank God for the education we had given ourselves prior to that or he would not be here now.

How old is your wife? I'm 55yr old Male and I had a SI resection, primary NET, GB and some lymph nodes removed and I feel much better, no bloating or abdominal pain. I can eat more, exercise regularly and my quality of life has improved since. I ask how old b/c I'm curious about the liver transplant strategy as I also have "innumerable" liver NETS.