Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Thank you, Zebraflower! I feel exactly the same! Had a CT scan on the 5th. Only have the results from the chest scan - thank God nothing in there! Waiting for the results from abdomen/pelvis, hopefully will be good, too. I mentioned hairloss to my oncologist today, he says it is a side effect of Lan injections.
I am 62, worked a job I loved until December 2022 when this rollercoaster started. I am still.on medical leave but considering SocSecDisability. Glad to hear some similar stories 🦓💜💜

My pNET is also grade 2 stage 4 with liver metastases. I had my 4th injection of Lanreotide and a CT scan on June 5 (4 mo after surgery). My hair is falling, I only have reactions to the injection the first week, BUT my CT scan showed no evidence of tumour recurrence or adenopathy and no new hepatic lesions! So happy! Continuing with Lanreotide once a month! Planning a trip to my native Bulgaria to see my family💜🦓. PNET will not define me! God bless and help us all!🙏

Thank you! I had my first CT scan after surgery and 3 Lan injections. No tumour recurrence and no new liver lesions! So I will continue on Lanreotide until it no longer works( hope it will work for a long time!). 💜🦓

That’s great news! Kim has her first recheck after surgery June 29th. We hope to have the same success as you got going. All the blood work and cancer markers have been good. She has gotten a insulin pump to help her manage the diabetes. Hopefully goods at end of month. 🙏🙏🙏

Wish her good scans from all my heart! Fingers crossed forgood results! Let us know. 🦓💜

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.

Thanks that’s is very helpful!!

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?