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← Return to pNET. Not sure what to do.
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Hello steph01,
I initially did watch and wait and my tumor grew, in hindsight I wish I had not waited at all. Some tumors grow very slowly, and some do not. Mine was in the latter category unfortunately.
I have now had 2 distal pancrectomies (2023 and 2026) Both times I have managed to keep my spleen. My first surgery was robotic and quite easy recovery. My last surgery ended up a much more complicated open procedure, with numerous post surgical complications. Both surgeries were done by the same surgeon.
I personally will always opt for surgery should the need arise again. As long as my body remains strong enough this is and will be my first treatment of choice, (providing of course that surgical removal continues to be an option for me.)
Find the best neuroendocrine specialists that you can find. And if you do go the surgical route, robotic or laparoscopic is the way to go( barring complications of course. Sometimes they just have to convert to open procedure.)
Best of luck. Don’t let fear of the unknown paralysis you, (as it did me.)
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@frogsong
Hi, Thanks for your message and I'm sorry to hear about all you've been through. Can I ask you more questions about your situation?
How long did you watch and wait until your tutor grew? Did you do MRI's or other scans and how often. How long since the diagnosis and when you realized it grew? Did you do a biopsy at the beginning? Why did you have to have 2 distal pancrectomies? Did they feel they removed after 2023 but then it came back because they might not have gotten all of it, or did you get a new pNET in another area?
Also, I can travel and am wondering if you could share your surgeon's name and hospital/ location?
Thank you for your help.