pNET. Not sure what to do.

@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 …

@lindabees Hi, The first surgery in 2023 showed the removed 6 of 8 positive nodes, and the R1 margin at pancreas. Both the Cleveland Clinic tumor board, and Dr. Eric Lieu Rocky Mountain Cancer Center, agreed that 6 mos surveillances was best for me… I know , it seems a bit wacky to have 6 of 8 positive nodes, and R1 margin and not be put on the shots. But they reasoned that there is nothing physical to fight, micro scopic cells yes, but no tumors. They reason that it is best to hold off on these treatments until there is a real need. Fast forward to surveillance MRIof Jan 2026, a new 1 cm tumor at the original surgical site discovered, and removed in Feb 2026, via another distal pancrectomy. No spread to harvested lymph nodes . But this tumor ki67 10% Both Tumor board and new neuroendocrine specialist at different hospitals, Cleveland Clinic and The James Cancer hospital in Columbus, agreed once again on surveillance.

I am sure this approach is not without reproach… and there are so many different ways to view the same picture. So many different ways you could go both with and without treatments. I guess as long as I do not develop troubling symptoms I will continue on with this surveillance protocol. And play “whack a mole” when I need to.

@steph01
Hi, I am 68 yrs old, I saw Dr. Brendan Visser from Stanford Cancer Center. My small tumor was diagnosed after CT, MRI, EUS biopsy, and Dotate Scan. It was stage 1 or ,2 until he discovered two tiny lesions on my liver, which made it stage 4 as it metastasized.

The laparoscopic surgery, was not an open incision, and it was robotic. It was not painful at all, and I was able to travel 2 weeks post surgery. He referred me to another Stanford Dr. Ghanouini, who performed a MRI guided RF ablation of two tiny lesions the week prior.

I believe this pancreatectomy and ablation was caught early, without chemo or any other treatment needed. I will be following up with an oncologist soon.

I highly recommend seeking second opinion at Stanford to with Dr. Visser. It is a top notch facility with state-of-the-art care and treatment with outstanding physicians.

Good luck.

@frogsong
Great explanation and if Dr Liu told you that, then that is all you need to know. He's one of the best!
Dr Norton at Stanford did my husband's distal in 2008 and another in 2017 when there was something in the surgical margin. Excellent pancreatic surgeon. All the best for you!

@steph01 I had surgery at the Rare Cancer Program with Dr Beaudreaux and his team. They are located at East Jefferson Hospital Metairie, La. Quite frankly, they did a surgery nobody else wanted to do. I was told inoperable by several surgeons and finally a whole tumor board before getting referred to the right guy. I had a small bowel resection 3 years ago removing 3 constrictions due to NETS. Had to have it. I had lost over 100 lbs because I couldn't eat.

Not all surgeons are equal. Not all radiologist are equal. Sometimes its a hunt to find the right help.

On the subject of biopsies. Think of a tumor as a blueberry muffin. If you stick that muffin with a needle you may or may not stick a blueberry. Same with a cancerous mass. Sometimes a nearby hot lymph node is a better target than the mass itself.

If you're willing to travel, I would highly recommend Dr. Douglas Evans at Froedtert Hospital and the Medical College of Wisconsin in Milwaukee.

Dr. Evans is an internationally recognized pancreatic cancer surgeon who has devoted much of his career to treating pancreatic cancer, including complex cases involving major blood vessels.

He works with a multidisciplinary team of pancreatic cancer specialists. I would strongly encourage you to contact his office for a second opinion and have your scans and medical records reviewed.

I believe getting an opinion from someone with his experience could be extremely valuable before making major treatment decisions.
Dr. Evans's office: (414) 805-6849 for new patient appointments.