Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

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.

Hello. I understand your plight to find the right care. My wife has a grade 2, stage 4 pancreatic Net diagnosed in April this year. We live in Georgia where there is good support for surgical NET treatment but no comprehensive NET program. The approach we took was to meet with a local medical oncologist who specializes in NET (30% of his practice) We then flew to NY for a consultation at Sloan Kettering. Dr. Reidy reviewed her CT, Pet dotatate, labs and conducted a thorough history and physical exam. She recommended a treatment approach that would not have been available as first line in Georgia. Her local oncologist was happy to implement that protocol and has coordinated nicely with Reidy. This approach may work for you at significantly lower cost than going fully out of network.

Hello @pmberman,

What a difficult place to be. You are definitely seeking the best care possible, but it seems that you are facing a lot of closed doors.

Often, persistence is necessary in order to get the help you need. I appreciate what you are doing. Will you keep posting with updates?

Hi @kim1965,

What all will be done at Kim's recheck? Is she having a scan and blood work done?

I hope that she has the best report possible!

Hello @tomatlanta and welcome to Mayo Connect's NET support group. I appreciate your response to @pmberman.

Your diligence in finding the best treatment for your wife's NET diagnosis is wonderful! It often involves seeking out a consultation with a NET specialist, like you did, in order to get the best treatment plan possible. Once the consultation is accomplished, then the treatment plan can often be followed up locally with an in-network doctor.

How is your wife feeling now? What type of follow-up is being planned?

Thanks for asking. My wife is in the middle of her first 14 day round of Captem. So far pretty good; minor GI discomfort and good energy levels at start of day but fatigue as the day goes on. The plan is for 6-9 months of 14 days on and 14 days off with CT scans at 3 month intervals. With a very large tumor the goal is shrinkage. We are hopeful that the therapy will work but if not there will be alternate avenues.

My diagnosis is the same as yours . I’m receiving monthly injections, no infusion. Like most others, I feel a bit under the weather for about 5 days, then I feel better each day . I have occasional severe pain in the upper left quadrant and mild pain in the left. I haven’t needed to take anything for the pain as it is only present for a few minutes. For abdominal bloating I’ve found that increasing my water intake helps tremendously. I hope you find peace in knowing you’re not alone in this.

Hello @lindaamos and welcome to the NETs support group on Mayo Connect. I'm wondering how long ago you were diagnosed with NETs. Were you having symptoms that led to this diagnosis?

I look forward to getting to know you. Please share more about your NETs journey as you are comfortable doing so.