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Grade 1 Non-functioning (NF) NET

Neuroendocrine Tumors (NETs) | Last Active: 5 days ago | Replies (45)

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@beaglebass

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

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Replies to "Thanks for sharing. I will seek surgery ASAP after 2nd opinion from academic medical center. Just..."

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.

Hi @beaglebass - just joined this group today and noticed your post. I was diagnosed with MEN1 back in 2019 after an incidental finding of 5 pNETs. I ended up getting a total pancreatectomy with the associated removals (spleen, gall bladder, etc.) The adjustment was a little different for me as you become a fragile diabetic on insulin and need to use enzymes for digestion. Took me about 4 months to get it dialed in and doing ok after almost five years. Folks say your life is over, and I just tell them, no, it's just different now. Happy to help if you need advice.