pNET. Not sure what to do.

@lindabees

Hi, and thank you so much for your reply. I hope your husband is doing well now. Since it's been so long, was surgery the best option as it cured him?

Not yet. I'm waiting the MRI in November and then I'm wondering if they'll suggest the Dotatate after that.

Right now I'm seeing a doctor at Princess Margaret. Should I ask them to give me a refer to the Susan Leslie Clinic? I would like to go here as you mentioned it and it looks to be a good place.

Thank you of the cnets website too.

@kathyfujii

Hi, wow this is very appreciated and I'm wishing you all the best.
I'm wondering if I an ask some questions? How old are you?
Where did you gt the surgery and would you mind sharing the name of the surgeon at Stanford? Was this robotic? I'm not sure if laparoscopic means robotic. Any other info you can provide about your tumor? The grade or stage they found out it was after surgery? Was the surgery painful and how was the recovery? Any pancreatic leakage?

Thank you.

@jlsgt

I hear you. Any recommendations of any doctor? I can travel. Thanks.

@frogsong

Hi, I'm sorry to hear your biopsy was inconclusive and you went through all of that. Have you had surgery or treatment and how's that going?

@jlsgt

Hi, thank you for your message. Do you mean it calcified after removal?
How are you doing now and did you do waiting or surgery?

@colleenyoung

Hi Colleen,
I have. Glad to have this forum.

I am being treated at PM. I'm a little anxious to be honest. A CT scan in June incidentally found the 1.2cm lesion. My MRI is in November. This seems like a very slow process and 2 people here told me their pNETs were not slow growing.

Do you have any recommendations for doctors/teams/surgeons? I can travel. I'm worried if I wait it will be too late.

Thank you for your help.

@steph01
Unfortunately, my husband wasn't cured by the surgery as it had already spread extensively to his liver by the time he was diagnosed. However, the surgery did set the clock back dramatically for him. Studies have shown that removing the primary tumor can significantly improve overall survival and time to progession. So he is very glad he had it done. A Google search for "high volume pancreatic surgery centers in Canada" will lead you to some great recommendations.

I'm unfamiliar with how the medical system works in Canada and whether or not it would require a referral to the NET specialist or if you can just call them and ask for an appointmen. I would recommend doing whatever needs to be done to get to the specialist. It can make a big difference. This disease really requires a specialist as general GI oncologists usually lack the needed knowledge of it to properly treat it.

With this disease, it is extremely important that you educate yourself about it so that you can be your own strongest advocate. You need to know enough about it to know if what any doctor is telling you, including a specialist, makes sense, A great resource for you is https://cnets.ca/
Do not be intimidated by them and do not be afraid to ask questions. That is what has made the difference for my husband. With that in mind, I wouldn't wait for the doctor to suggest the dotatate scan. It can be done at the same time as the MRI and since as I understand it, it can take time for things to get scheduled in Canada, I would suggest reaching out to your doctor now amd asking about getting that done with the MRI if at all possible.
I hope everything goes well for you!!

@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!

@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 😊)

@frogsong
Also, as cells morph and spread to nodes and other locations they can have different ki67