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PNET Surgery: My recovery journey

Neuroendocrine Tumors (NETs) | Last Active: May 22, 2023 | Replies (72)

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@kim1965

@fabiant
No she had a open incision, about 12" from center of stomach up. So a couple of suggestions right away, be sure you are working with or get a second opinion from NET Specialist. NET as you find if your researching it like crazy like we did when first diagnosed, is a very rare cancer. Many oncologist's haven't had much experience with it. Ours referred us to Froedtert Hospital in Milwaukee, WI to their Cancer Care Center Team. It is very important to get the best advice to have a multi-disciplinary cancer care team to battle NET. From what you mentioned, you have caught it very early. We all here are not doctor's of course, but we all share our stories to help one another at least to be better prepared to have questions prepared for their Cancer Care Team. Each version of NET's effects everyone differently. Your Cancer Care Team will determine which is the best course of action for your case. Our case to give you a brief rundown, my wife was diagnosed with NET in April 2022. She had a mass on pancreas, and too numerous of lesions to count on Liver. We immediately ed to started Chemo (CAP/TEM) pills version and monthly injections of Lanreotide, and after 9 months, reduced the tumors in both areas by 80%, allowing for surgery in 3/1/23. We are here to help and offer support however it will help you in moving forward and fighting NET. Let us know how we can help.

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Replies to "@fabiant No she had a open incision, about 12" from center of stomach up. So a..."

Kim

Thank you. I'm being seen at the Mayo Clinic in Phoenix/Scotsdale. My oncologist specializes in treating PNETs. My surgeon, whom I'm meeting with on May 2nd for the first time, specializes in treating PNETS. I'm waiting to see what her recommendation is for this tumor. My Oncologist wants to do the observe and wait but it feels like a ticking time bomb. I'm not sure how slow this cancer grows. I'm just starting to learn all I can about this disease. The PNET is localized and well differentiated. They say it hasn't spread. I trying to understand the best options for me at this time. They say enucleation surgery is potentially an option. I'm trying to find information on this surgery. If you know of anybody who's had enucleation surgery, it would be great to communicate with them. Thanks,