Pre diagnosis?? Confusing early days

Hi Emsie333,

I can only advise re my own experience. My symptoms were weight loss and itching. Blood tests indicated issues with liver. I was advised at that point it could be cancer. CT scan showed a 2cm lesion  I had two endoscopy examinations one with ultrasound and second one with side facing camera which went into pancreatic duct, stents were inserted and scrapings taken. All were negative and the stents had covered the tumour so could not be seen by the camera. A PET scan was then done, which showed a lot of glucose activity at the head of my pancreas, causing a restriction to both my pancreatic duct and bile duct. I was told that cancer could not be confirmed pre surgery but all the experts believed there was a tumour there. Following surgery, the Whipple procedure,  it was confirmed I did have a malignant tumour. I have just finished my course of chemo and am doing well, just left with some chemo induced peripheral neuropathy. I did not meet a MM nurse. I only met the Oncology team post surgery under Upper gastrointestinal team prior to surgery.  Hope this info helps.

Thank you so so much for taking the time to reply and providing this information. I am so glad to hear you are doing well. That’s actually so helpful to hear about the different scans etc. that you experienced and also, something I hadn’t considered, the potential that we may not have a confirmation of cancer until the actual surgery. And also that in your own experience it wasn’t until post surgery that you moved to oncology. That’s all very helpful to consider and in terms of expectations (and possible routes). Can’t thank you enough for sharing and really wish you the very best 

It is awful the waiting, the feeling unsure the worry. I too  have been there and I totally understand how anxious it makes you feel. My husband had to undergo CT scans and then biopsies before a difinative diagnosis. We also had to wait for the MDT (Multidisapliary team meeting ) which was 2 weeks later. In the end we decided just to go away for a week somewhere local but somewhere different just to try to let the stress go. If Im really honest with you I think the unknown was more scary than the known. In our case my husband was diagnosed with pancreatic cancer but it came with a plan, treatment and a way forward, its an ongoing journey with more unknowns. For us  It really is a case of a day at a time. You are not alone and I know how scary not knowing  feels. Maybe if you can like us just plan days away or do something different than your normal routine it does help to take your mind off the waiting. Most of all Im thinking of you and your mum and Im praying for good news

Thank you Iamtrying for taking the time to reply and share your experience and your husbands relating to his diagnosis. It’s really helpful. My Mum has spoken to the nurse who has suggested CT scan will be next step but we will hopefully be clearer on Friday what the plan is. I also really value your kindness and explaining how you managed such a stressful time, really great advice and thank you for thinking of us. I am thinking of you and your husband too and hope everything is going as well as it possibly can.