Son, 48 diagnosed with PNET pancreatic cancer 8cm tail & spleen

Yes I will! I do know all his lymph nodes in chest and neck as well as 3-4 behind pancreas were involved. we were told by a surgeon that deals with PNET that he usually sees this specific type of tumor in the duodenum. He also told me that because it was widespread not a surgical candidate at this time. I just retired from UVA (nurse) 1.3 years ago. I’m pretty sure it’s a functional tumor and the type of tumor is Somatostatinoma. Unfortunately we don’t know how aggressive tumor is. The 7 sample biopsies from the EUS did not show. He may have a biopsy of lymph node in neck. Monday at 2 pm we see the oncologist. I researched the heck out of physicians and this oncologist is a specialist in PNET. I have contacted another surgeon also. Until we talk with oncologist I just don’t know the plan. Thank you all for the advice I have notebooks full of information and two pages of questions!

Update: I really like this oncologist PNET is his specialty! I like what he said to my son “ consider this as a chronic disease!” My son thought he would be dead within the year based on his Dad’s diagnosis pancreatic cancer but totally different tumor. We need the K1-67 but right now he wants his symptoms under control. Scheduled for a PET scan and glucose and polypeptide hormone lab. In the meantime going on creon. Hopefully this week will help with more answers. He is going to get a biopsy of lymph node in neck but probably next week or so. I’ll keep you updated. Thank you again for the help!

Oh, I'm so pleased that you got some good information, @llr9f. I'm especially glad that the doctor let your son know that this type of pancreatic cancer is not the same as his dad's cancer. That must be a relief for you both. It is great that your son is seeing a doctor who specializes in PNET. That is vital.

I'm looking forward to reading your updates as time goes on. Will you post again as you get more information on test results as well as suggested treatments?

Glad you're helping him, keep getting all information you can. I had some of the same mine was removed half the pancreas and the spleen I did not have any lymph nodes spread. And still not diabetic after 9 months. Find best Gi surgeon early that's has done this before. Get regular blood test. I wish you both the best to recover Iam73 got Nets at 72 .It is a adjustment in what he can eat Be strong do well

Your tracking great with being a strong advocate for your son's health with this diagnosis. Our short story is my wife, diagnosed with NET April 2022, stage 4 mass on pancreas, spreaded to liver too numerous to count. Surgery not possible at this point. Did 9 months of chemo, CAP/TEM, got great reduction in size of tumors, had surgery to remove tail of pancreas, mass on pancreas, spleen, gall bladder, and debulk tumors on liver. Did a round of PRRT, to further reduce size of tumors, and we thought per our tumor team, that she would be on maintainence the rest of her life. Our team presented a difficult choice, try to stay ahead of it with treatment, or consider a liver transplant. Reason being, the only spot that PET scan showed was still in the liver. We got many 2nd opinions from Mayo and etc. There was no consenous on the right decision. We eventually got it, that's another story, too long for here. What I wanted to share as it certainly sounds like you have a understanding of the medical field, the NET Specialist is the most important part of your treatment going forward, and if all possible as part of a team of doctors in all specialities, so you are getting the best of the best to make the best decision for your case. Each case of NET is so different, my wife has a good future, we gotten way ahead of it, with the assistance of our Team, and we wish you the best in your son's fight against NET. You got this, we all are here to help out however we can.

Slowly we are getting the pieces of the puzzle to find out the staging. Tumor is well differentiated (good thing), Cga 252, waiting on another lab result hopefully Monday. Getting a pet scan specific type for this ( pulling strings so will know Monday the date). Still need another biopsy to find the K1-67. ( will be taking from neck lymph node, don’t know when). My son is very de-conditioned unfortunately so dealing with 30 plus weight loss 4 -5 weeks. I’ve gotten him on creon which should help with weight. He’s taking up to 240 of simethicone for gas, which isn’t helping much. See oncologist Tuesday, his blood count is dropping which is probably from the tumor enveloping his spleen. Tumor on tail and spleen as well as 4 lymph nodes behind pancreas and Mets to lymph nodes all over chest, neck. Not in lungs. I’ve finally gotten his glucose under control for now, high doses of Lantus as well as on a sliding scale. This is such a nightmare. My son is the oldest of 4 children. I’m doing everything to move mountains.

Just take a deep breath. It can be a long process. I have a metastatic Pnet primarily to the liver. My scans have shown it from my skull to my tibia. Consequently, I have been only on chemo since 9/1/22. Surgery is not an option. Eventually things shrunk and stabilized. That is working for me, so I am staying the course.

Thank you for that!

What is a net specialist? Who is one at Mayo in Jax Fla?

You are on the right track by finding NET specialist! Relax, and give him your support! My oncologist said we " treat it as a chronic disease"! Had " debulking surgery" Feb.1, 2023.
Mine is a well differentiated pNET Grade 2, Stage 4 ( liver metastases). Have been on Lanreotide since March'23. And Creon. Keep up the faith! This is not a death sentence! Hugs!🦓💜