Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Hello all! New to the group. Diagnosed with PNET that have metastasized to liver, bone, lung. Had symptoms for years but no one could find out what was going on. I had a bout of pancreatitis in December and my gallbladder was removed at that time. Scans revealed something on the pancreas. Long story short, stage 4. Grade 2 well differentiated tumors Started lanreotide two weeks ago. I have been experiencing bloating, low heart rate, wheezing and some swollen tongue issues which my doctor does not feel are related. Has anyone else had these symptoms? I also have experienced some insomnia and tumor area pain. Anyone else?
Thank you!

Hello all! New to the group. Diagnosed with PNET that have metastasized to liver, bone, lung. Had symptoms for years but no one could find out what was going on. I had a bout of pancreatitis in December and my gallbladder was removed at that time. Scans revealed something on the pancreas. Long story short, stage 4. Grade 2 well differentiated tumors Started lanreotide two weeks ago. I have been experiencing bloating, low heart rate, wheezing and some swollen tongue issues which my doctor does not feel are related. Has anyone else had these symptoms? I also have experienced some insomnia and tumor area pain. Anyone else?
Thank you!

Hi all, I’m new to this forum and this condition. Started with GI pain and inconsistent stool about 8 weeks ago (maybe longer in retrospect). Then the flushing, palpitations, loss of appetite, weight loss, and just feeling weak and unwell. After seeing 4 doctors, I ended up going to Cleveland Clinic Weston, FL where they did (at my request) the 5-HIAA urine test and 64 CU Dotatate PET scan. The urine test came back positive and the PET lit up areas of my duodenum and it looks like a 4mm nodule in right lung with possible lymph involvement, although they actually told me the scan was normal!! (It’s not clearly). I have the textbook carcinoid syndrome symptoms as stated above. Unfortunately, because Cleveland Clinic does not have NET specialists, they are flying blind and I am having to tell them to what tests and scans I need so I can get the disease localized and treated somewhere that has a clue. This week I am going back to Cleveland Clinic to have an upper endoscopy with biopsies as well as an upper endoscopic ultrasound to look at pancreas, ducts etc. I am going to also demand MRIs and ultrasounds of the liver, lungs and pancreas. The PET didn’t show anything in the liver, but I don’t trust that because I’ve read a lot on this site about liver metastases being very small and numerous and hard to see on scans. I’ve also learned that you don’t get the carcinoid syndrome symptoms unless it’s in the liver and/or lungs. This has been a long, scary road that’s upended my life and I don’t feel I am dealing with experts which is costing me precious time. I have FL Blue insurance so I’m kind of stuck with what we have here. Any advice, thoughts and prayers would be welcomed. This isn’t what I expected at 56. It’s hard to function. PS - I’ve been thinking about going to Moffitt in Tampa, but they seem to only focus on GI, so if it’s in the liver or lung then not sure they can help? Mayo FL is out of network for my insurance, but I’d go there if it was better. Also even thinking about going to a true specialist like MD Anderson or Mayo MN and paying out of pocket. I’d have to sell our house to cover it but what’s a house with no life? Angry, sad and confused. Sorry to be such a downer.

I have pancreatic neuroendocrine tumor with liver metastasis. It is grade 1. I am scheduled for surgery but often consider canceling. The goal of the surgery would be “ cytoreduction. This would entail a distal pancreatectomy, splenectomy, cholecystectomy, wedge resection and ablations of the liver.” I understand that to mean they would remove the tumor in the tail of the pancreas, remove and ablate some tumors in my liver and also remove my spleen and gall bladder. If I do not do surgery, the other option is to do monthly hormone shots which I was told are effective for 3 to 7 years. Any advice would be greatly appreciated.

I have pancreatic neuroendocrine tumor with liver metastasis. It is grade 1. I am scheduled for surgery but often consider canceling. The goal of the surgery would be “ cytoreduction. This would entail a distal pancreatectomy, splenectomy, cholecystectomy, wedge resection and ablations of the liver.” I understand that to mean they would remove the tumor in the tail of the pancreas, remove and ablate some tumors in my liver and also remove my spleen and gall bladder. If I do not do surgery, the other option is to do monthly hormone shots which I was told are effective for 3 to 7 years. Any advice would be greatly appreciated.

I have pancreatic neuroendocrine tumor with liver metastasis. It is grade 1. I am scheduled for surgery but often consider canceling. The goal of the surgery would be “ cytoreduction. This would entail a distal pancreatectomy, splenectomy, cholecystectomy, wedge resection and ablations of the liver.” I understand that to mean they would remove the tumor in the tail of the pancreas, remove and ablate some tumors in my liver and also remove my spleen and gall bladder. If I do not do surgery, the other option is to do monthly hormone shots which I was told are effective for 3 to 7 years. Any advice would be greatly appreciated.

I have pancreatic neuroendocrine tumor with liver metastasis. It is grade 1. I am scheduled for surgery but often consider canceling. The goal of the surgery would be “ cytoreduction. This would entail a distal pancreatectomy, splenectomy, cholecystectomy, wedge resection and ablations of the liver.” I understand that to mean they would remove the tumor in the tail of the pancreas, remove and ablate some tumors in my liver and also remove my spleen and gall bladder. If I do not do surgery, the other option is to do monthly hormone shots which I was told are effective for 3 to 7 years. Any advice would be greatly appreciated.