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← Return to pNET. Not sure what to do.
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Neuroendocrine Tumors (NETs) | Last Active: 2 days ago | Replies (26)
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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.
Replies to "@frogsong Hi, Thanks for your message and I'm sorry to hear about all you've been through...."
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@steph01 . My first tumor was found incidentally in april of 2022, Had biopsy of the 1.6 cm tumor in May of 2022. It was inconclusive . I then saw two different Drs one at Mayo and one in my state , at Cleveland Clinic. After dotatate, both agreed watchful waiting was a safe choice. Fast forward 6mos scan shows growth to 2.1 cm. And we decided to have it robotically removed. Did so at Cleveland Clinic, ( ultimately because robotic choice wasn't offered at Mayo with the surgeon that I saw. Plus the travel equation. I opted for home. Best decision???? Maybe, maybe not. ) Had surgery in Jan of 2023, easy recovery! No post surgery complications!
However pathology was a nasty surprise, perineural invasion, vascular invasion and 6 of 8 lymph nodes positive! I also did not have clean surgical margins!
Tumor board said no treatment! 6 mos mri surveillance . I consulted w Dr. Eric Liu. He said this strategy made sense. He also said knowing WHEN to treat was as important as HOW to treat. He is also big on cutting tumors out if possible.
So I hold on to that way of thinking. Life pleasantly flowed along until Jan 2026 surveillance showed a 1.cm tumor at old surgical margin. Had dotatate and then surgery in Feb2026. Initially scheduled to be laparoscopic, ( not robotic this time as robotic surgery would’ve been delayed, still had same surgeon, Dr Matt Walsh.) During the surgery had to be converted to open because of all the surgical adhesion of pancreas remnant to stomach wall.
Recovery very hard, wont lie, lots of post surgical issues, just a perfect storm of what could go wrong.
But I recovered, and was ziplining and mountain biking in Alaska by mid May. I am back to 6 mos surveillance , blood test etc. and life goes on. The worst residual for me is anxiety …