pNET. Not sure what to do.

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.)

I would strongly recommend getting an opinion at a major high-volume pancreatic center before choosing surgery, particularly since you've already been told that either surveillance or surgery could be reasonable. The AGA specifically recommends expert pancreatic surgical care when surgery for a pancreatic cyst is being considered.

Hi
My husband had a distal pancreatectomy with spleen removal 18 years ago. The splenectomy really hasn't resulted in any issues. There are several vaccines that were required that he have following the surgery. He now keeps an eye on his temperature if he gets a fever. Are they planning to do a dotatate pet scan? That will give you the whole picture and allow you to make an informed decision.
If at all possible, try to be treated by a net specialist. Canada's primary specialized multidisciplinary center for neuroendocrine tumors (NETs) is the Susan Leslie Clinic for Neuroendocrine Tumours at Sunnybrook Health Sciences Centre (Odette Cancer Centre) in Toronto, Ontario)
Also, it's great that your looking for guidance. It's also really important that you educate yourself as much as possible about this. Here's a great site for that:https://cnets.ca/

I also had a small Pnet diagnosed in March of this year, and had a distal pancreatectomy in July to remove it. I highly recommend resection as soon as possible because even though it was small, slow growing in the tail like yours, my Stanford surgeon discovered 2 tiny lesions on my liver that it had metastasized to (from Dotatate scan.)) This was zapped in an RF procedure the week before with microwave ablation. I was also lucky that my spleen was saved, and my surgery was laparoscopic. Hopefully I'll just require surveillance through scans. I'll see an oncologist in November. So, waiting is NOT recommended!

I would be getting a second opinion on that biopsy. Who knows what's going on without it? Surgeons want to do surgery.

I personally had a biopsy and it was inconclusive … ultimately waited 6mos and tumor had grown and I had 6 of 8 lymph nodes positive (no show on dotatate) as well as perineural and vascular invasion… Every case is different and my case is not, was not, like the probable majority that grow slowly. My point to consider, biopsies are not always reliable when trying to accurately diagnosis a very small lesion…

Sometimes biopsies are inconclusive because the tested tissue has calcified and is no longer living cancerous tissue. I had a surgical biopsy that was this way. I then had a CT guided needle biopsy at another hospital. This time the radiologist went for a nearby lymph node and it was a successful biopsy showing I was positive for NETS.

Hi @steph01, I hope you saw the many helpful replies from fellow members. Are you being treated at Princess Margaret Cancer Centre in Toronto? How are you doing?

@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.

@mcharlesfrancis

Hi, and thank you for your reply. Are there any centres you would recommend? I can travel. Thanks.