Any advice for someone recently diagnosed with NETs?

Hi I had my surgery in Aug 2024 about the same I am 73 I had a robot assisted in Phoenix with Dr Brinks .In hospital two and half days /five small openings one medium one to remove spleen. Recover Gi upset was worse eat light food and My pain was not bad go slow walking .
I drove my self to follow to see Doctor over100 miles in 6 days .Try to find this kind of surgery small the much faster recover Best wishes

Thank you very much for your reply. I am happy to hear that everything was well in your case.
My father live in Serbia and I think that the surgery will be the classical one. The postoperative course is the thing that concerns me. How long does it take for you to start eating and to have normal Gi function? Do you have to take pancreatic enzymes? Do you have any restrictions in diet now?
Best regards and all well,

Ana

Hi @annamill
Sorry to hear about your father's illness. If it helps, I was diagnosed with multiple pancreatic NETs as a result of MEN1 about 6 years ago and ended up having a total pancreatectomy in 2019. Since then, I am on an insulin pump and pancreatic enzymes and have managed fairly well with A1C's in the low 6's. I do have to be mindful of the fat content of food with the enzymes (Creon) but all in all it has been manageable. My endocrinologist has been very helpful in working with me to tweak my pump settings over the years to avoid highs and lows and I would recommend a pump/CGM combo if needed for your dad. Take care and God Bless.
- Matt

My wife was diagnosed in April 2022, with NET with primary on pancreas, and too many tumors on liver to count. We started Lanreotide immediately, then chemo (pills), which reduced the tumors enough to have the surgery your referring too. She had the primary on pancreas removed, spleen removed, and some tumors on liver debulked. She then had 3 cycles of PRRT which further reduced the remaining tumors still in liver. Now our team at Froedtert reccomended liver transplant surgery, not a option many have, but after numerous 2nd/3rd opinions we went ahead with, and today is her transplant. To try to answer your questions, each case in NET you will find different ways to treat it, based on your NET Specialist/Team recommnedation. Our path is very rare. Until the transplant today, the day to day was good, actually more issues with maintaining our glucose levels with Omnipod. We are doing well, you got this, ask lots of questions of your team, and make the best choice for your case. You got this!