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pNET. Not sure what to do.

Neuroendocrine Tumors (NETs) | Last Active: 2 days ago | Replies (26)

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@steph01 Hi Steph01, My first robotic. distal pancrectomy was in 2023, ended up with well differentiated grade 2, Ki 67 6.7 pathology with 6 of 8 lymph nodes positive. Had surveillance mris every 6 mos. Fast forward to 2026 and I had a new 1.cm lesion at the old surgical margin show up on surveillance mri. Had second distal pancrectomy this time open as prior surgical staples had adhered to stomach wall and acted as a bridge for some microscopic cells to hitch hike across. Had to have a wedge removed from stomach wall. (Was no picnic) This time, while still well differentiated grade 2 , Ki 67 was now 10. I struggled a lot for about 4 months, multiple complications from infected surgical fluid pockets on surgical bed, cdiff, and mal nutrition, and debilitating anxiety.

But even after all the struggles I will not hesitate for more surgery should the need arise and my body capable. I feel it helps reset the clock so to speak as long as my tumors stay local.. I do assume that a third surgery on my pancreas could possibly be impossible due to scar tissue but We will see in the event that this happens .

I am Doing better now. Back to surveillance. No residual troubles with digestion or anything. My biggest struggle still remains my anxiety. (Which I am treated for.) I continue with surveillance, blood work, and seeing both neuroendocrine oncologist and gastroenterologist, and psychiatrist. Best of luck, ask any questions! I did find fear of the unknown often the hardest thing to cope with for myself. Again best of luck, its a long hard ride, but you will stay in the saddle!

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Replies to "@steph01 Hi Steph01, My first robotic. distal pancrectomy was in 2023, ended up with well differentiated..."

@frogsong
Glad to hear you're doing well following those surgeries! Were the positive nodes removed during the surgery? Are you also receiving monthly lanreotide injections because of the node spread?
(Don't mean to hijack @steph01 post with these questions for you 😊)