newly diagnosed pNET on tail of pancreas

Hello @cangre82 and welcome to Mayo Connect. I can understand your concern and your need for information about the mass on the pancreas. As you posted in the Neuroendocrine Tumor support group, I'm assuming that your doctors have told you that this mass is a NETs?

Here is a link to a discussion group where members have been diagnosed with a NET on the pancreas,
--Just Diagnosed with Pancreatic NET
https://connect.mayoclinic.org/discussion/just-diagnosed-with-pancreatic-net-stage-1/
I would encourage you to read the posts and post your own questions in this group.

Were any other diagnostic tests done other than the CT scan? Have you had any other symptoms besides the abdominal pain?

Hello! Welcome to the ' zebra club' :). I had somewhat complicated case , as had 2 cancers detected at the same time - pNET and endometrial. I had surgery for both ( my pNET was large 20×16 cm) done openly. For the size of your tumor it may be possible to have it robotic, which is much less invasive. I had surgery on Feb 1, 2023 and have been on Lanreotide injections since, plus CT scans every 3 months for monitoring, as my cancer is stage 4, with liver metastases. In my opinion the sooner you have surgery the better! Recovery even with open surgery is not so bad and I am 63 yo. Good luck to you, and keep your faith and fight! Pavlina - reach out if you have some specific questions!💜🦓

@cangre82, a lot of us have done your path, and we tell you our story and hope that it gives you some assistance in your case. My wife also was diagnosed with a tumor a bigger than yours on the pancreas, that spread to the liver with too many tumors to count. In oncologist had only had 2 cases of NET in his career, and he is about to retire. He recommended her to a multi-disciplinary team with a NET specialist part of a team. They immediately started her plan, after confirming with a biopsy. Since she was not eligible for surgery, she did 9 months of CAP/TEM which greatly reduce all tumors in both areas. This allowed surgery to remove tail of pancreas, gall bladder, and debulk as many tumors on liver as possible. She also did 4 treatments of PRRT that reduce tumors on liver to a much more healthy state. So for now, she is a good place being monitored every 3 months. So 3 suggestions for you, try to get a team similar to above, become as educated as you can about NET, and join the fight against NET with the rest of us. We all got this! 🙏

Thanks for your post. Can you tell me how old your wife is please? I had the same diagnosis. pNET on tail of pancreas with too numerous to count liver metastasis. I am age 77. Both my Mayo Clinic oncologist and my university of Michigan cancer Center oncologist recommended only lanreotide injections which I have been getting since early August 2023. So far no progression of cancer, but no reduction either. Both oncologists say we can try CAP/TEM and/or PRRT later if The cancer starts to spread again, but they say I am likely to die of something other than my NETs. I suspect my age is why they have taken this approach. That is why I am asking your wife’s age. Thanks.

Hi! It’s actually me that has the diagnosis and I’m 41 yrs old. I really don’t have much information about my situation other than it being on the tail of my pancreas and its 2.6cm in size.

@retiredinkazoo - I have similar case - huge pNet on the tail ( 20x16 cm) plus endometrial cancer. Diagnosed at 62yo. Had surgery for distal pancreatectomy, spleen, gallbladder removal, liver debulking and total hysterectomy. I have also been on lanreotide (120 mg) for 14 mo now; CT scans every 3 months showed no further progression (for now). I am having my nect CT tomorrow. My oncologist feels that in my case lanreotide is the first 'line of defense' and if we see progression will go to other treatments (CAP/TEM or Luthatera) which are available in Syracuse where I live, luckily! Keep your faith and we are all in this together!

I’m going to be starting PRRT Lutathera treatment in August I’m concerned about the radiation part can you tell me more about your experience. Thank you

@kc43 how interesting that the initials in your mayo name of @kc43, is the exact initials of of my wife Kim C. who is doing better. After being diagnosed in April 2022, 9 cycles chemo CAP/TEM, surgery and removal of mass on pancreas tail, gall bladder removal, and her liver had too many tumors on it originally, to do anything, but after the chemo (pill form), she had near 70% reduction from stage 4 they did the surgery listed. After monitoring it, and switching from Lanreotide to Ocretide, our team wanted us to consider a liver transplant, after doing 4 cycles of PRRT ending this past March. Fortunately, the PET scan revealed even further reduction in the remaining tumors in her liver, the only remaining spot of NET per the PET scan. In answer to your question, in our case, she tolerated the PRRT treatments, the 1st one was almost seemless, no nausua, just a bit tired. The 2nd one she was real tired, but not much nausa. The last two went ok, and but the wait for 90 days after the last cycle was mentally the worst, not knowing whether the NET had started growing again, or if the PRRT treatments had at least stopped the growing or reduced the tumors remaining. For now our team is pleased with the progress and relative appearance of the liver on PET scan and MRI, it looks pretty healthy, for now. We may still consider the liver transplant down the road if needed, and just be inactive on the transplant list for now. I hope this gives you some information, as I'm sure your aware that everyone has different reactions to the PRRT treatment. She is 60 years young, and did better than we expected, and more importantly good results for now. Please let us know what other questions you may have on this fight that we share with everyone in this group. We all got this!

Hi friend. I had a 3cm Pnet on the tail of my pancreas. It was spotted on a CT after I was having some strange pain. My physician worked quickly to get me referred to a pancreas specialist in St. Louis. She was wonderful and the surgery was done fairly quickly. After some initial complications following surgery, I'm being monitored with CT's and labs. It was very frightening getting my surgery and diagnosis. But that being said I'm doing very well now. This is a good place for you to get support and ask questions. You are not alone 🙂