Hey everyone. So I was diagnosed with pancreatic neuroendocrine cancer and underwent a whipple surgery to remove half of the pancreas duodenum bile duct and gall bladder. The operation went well. Fast forward to Oct 2024 and I started getting dark stools (sorry tmi) which was caused by bleeding ulcers where they had joined everything. Ever since then I've been in and out of hospital and tried all sorts of medication (they call it triple therapy) and I ended up having a revison of the surgery. That was 5 weeks ago and again I'm back I'm hospital with bleeding amd low HB levels basically anemic. I've been here 2 weeks and they can't find the cause. They are planning to get me stable and send me home but I'm so worried that it will happen for a 3rd time. They are good at treating the symptoms but they can't find the underlying cause and its causes me so much anxiety. Has anyone else had experiences like this? The cancer I have is slow growing and generally by the time iys found its stage 4. I feel somewhat dismissed by the medical team. Sorry to rant on I just needed to put it all out there   ... View more

Hi everyone. So after what feels like months and months of waiting and constant tests and oncology appointments my doctors and surgeon have come to the conclusion that my only option for my cancer (pancreatic  neuroendocrine cancer. Same at Steve Jobs) is to have a whipple surgery which from what I'm told is life changing and complicated. I was in shock to be honest. I'm currently on lanreotide injections monthly but chemo isn't an option as they are unsure where to target. That confused me a bit but I have my trust in them. The one thing that just scared me was when the oncologist said "this will prolong your life". It was hard to hear as up to that point I didn't even consider the future. I mean they can cut out the majority of my cancer but they have also said it can return and its not a cure. I'm at a loss as to how to feel and how to manage this. The surgery is in 3 weeks. With love and hope to all.   ... View more

Ok so I might just be having a day or a week but I just needed to share. I'm struggling. I try each day to have that "you will get through this" attitude but iys damn hard. I was first diagnosed on Oct 19th 2023 with a neuroendocrine tumor but 2 stays in ED and one at Peter Mac and its now confirmed as stage 3 pancreatic neuroendocrine cancer (think the one steve jobs had) I wake up and some days I feel good and forgot then I remember and I sink into despair and fear and just a dark place. So my question to you all is "how?" How do I do this? How do I face this with strength and courage and not fear?........I'm so afraid...... ... View more

I was diagnosed with neuroendocrine cancer in my duodenum which also looks to have spread to lymph node near the pancreas. The dr at a "questionable" hospital did the biopsy on thr tumor which came back as inconclusive. I thought this was odd as my dr who originally diagnosed me told me the pet scan showed it very clearly. Fast forward to now and I've just had another biopsy done now in the lymph node near pancreas as oncologist at peter mac thinks they missed the first time. Has anyone else had biopsy experiences like this ? I'm worried they will just leave it not do anything and then it will spread.  ... View more

Hi My name is Chris  I've recently in the last month been diagnosed with neuroendocrine cancer in the duodenum with a possible spread to lymph node near pancreas.The symtoms were so common and I was diagnosed with IBS but it was by chance the dr decided to do a pet scan which showed the cancer. It's been really an emotional roller-coaster. They have now done a biopsy on the lymph node near the pancreas as this wasn't done the first time. I don't know where this will all go and what will happen but if I'm honest I'm scared. I'm scared for my family and I'm scared that this will be something that will always be coming after me. I've started treatment at peter mac which are just amazing and I hope there will be a good outcome. I'm told it will be surgery and chemo to treat it.For all those battling the big C keep fighting and remember you are not alone.  ... View more