Grade 1 Non-functioning (NF) NET

Get it done sooner before it spread. The recovery is slow but as long as you follow the post op instruction and perhaps watch what you eat. Hubby is on antibiotics in am for life, creon 25,000 3X a day and 10,000 in between. Always check your blood sugar level and seek advise should it goes up or drop always have some jellybeans and healthy snacks with you. Always watch for your due injections.

Second opinion is always advisable. Hopefully you can find a dr that treats Pnet patients regularly. The Ki 67 number is an important to know. There is also a Facebook page “Ronny Alan’s nueroendocrine tumor group”. Hundreds of people from around the world with net tumors are part of his group. They have a lot of good information to share.

Hi. I have not been told that there is any metastasis. There is a small nodule on my lung; a year ago radiology report said nodule looked suspicious. My six month scan in December 2023 said again that nodule looked suspicious. A biopsy has not been suggested yet. I am assuming that drs were not too concerned about the lung nodule. I see the oncologist next week and I will report back here any updates.

Thank you for sharing. Just worried. I'm getting a second opinion then making a decision for the surgeon. Wish you favorable diagnosis. Kenneth

Thank you for sharing. Best of health. Plz. Stay in touch. AM I UNSTANDING SPREAD AFTER 4 YEARS !

Hi Ken, Glad you’re being so proactive! Reoccurrence is a frightening thought, these message boards really help. I haven’t changed my diet at all. I haven’t found anything too spicy or sweet that causes problems, but listen to whatever your drs say. My scan is next week. I’ll let you know how it goes. Please keep me updated on your surgery. Best of luck and health!

Lizzy, thank you for sharing. Best of health. Planning surgery ASAP , we worry about recurrence. Is your diet normal or modified daily? Seeking doctor to spare spleen but so far recommended spleen removal. Once you have your scan plz. let me know how you are doing! Thanks Ken

Hi. In December 2019 I had a biopsy that showed I had a 2cm non-functioning malignant Pnet ki >2.
I had a distal pancreatectomy performed at Mayo Rochester in January of 2020. No spleen removal. I have scans every 6 months. So far, no metastasis. A small nodule in my lung showed up on scan last May, The scan report says lung nodule looked suspicious. We are on wait and see with the lung nodule. Presently, I have no symptoms and I am feeling well. I have a few ventral hernias near incision, so I’m careful to not lift anything too heavy. Initially, after my first biopsy, I was really frightened. After four years, I still get a little frightened something might return, but for the most part I live a completely normal life.

Thanks for sharing. I will seek surgery ASAP after 2nd opinion from academic medical center. Just worried about quality of life postoperative.

BTW, I’m in the Cam2029 Clinical Trial at Mayo/Jacksonville and tolerating biweekly octreotide injections very well so there is much to be thankful for. Neuroendocrine tumors truly are the elusive zebra!