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  1. Forums

    1. News from Pancreatic Cancer UK

      Read the latest updates from Pancreatic Cancer UK and how you can help us.

    2. Patient Experience Forum

      A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

    3. Family, friends and carers

      A forum for family, friends and carers' of pancreatic cancer patients.

    4. Treatment, symptoms & side effects

      A forum to focus on treatment related issues, symptoms and side effects from treatment.

    5. Advanced pancreatic cancer

      A forum for advanced pancreatic cancer issues.

    6. General chat

      A forum for any other issues around pancreatic cancer.

    7. After pancreatic cancer – coping with loss

      A place to support each other after a loved one has died, whether they were a partner, friend or family member. Grief can affect people differently, so please be kind and respect others' views on how they choose to cope.

  • Recent Posts

    • rhi
      I agree. Having an area where there is anonymity with people who have had similar experiences helps. I think. I know I’ll try and sleep tonight after having a good scroll around to see if anyone else out there feels the same way in some way. Hope you’re doing ok out there. I’ve had a pretty rotten day and need to spend some time repairing the eye bags I can’t seem to shake off. A small but daily reminder of the loss I’m feeling. 
    • RuthN
      Hi broju, thankyou for replying. Please can I ask you a bit more.  Did the symptoms come on while your husband was still at the hospital where he had the EUS? Or had you gone home?  Do you remember how long it took to settle completely?  Did the result of the FNA change the management of his disease? Did he ever have another episode and if so was that after an FNA or just out of the blue? And did that settle also?    I hope asking you these questions isn’t too distressing for you. If so I apologise, I’m sorry.  Ruth
    • broju
      Hello Ruth My husband had an EUS with fine needle biopsy too and did have pancreatitis afterwards. We were not warned about this so his symptoms, which started pretty soon after the procedure, alarmed us.  He was admitted to Hospital and stayed  for a few nights until his bloods were satisfactory and his temperature normal then sent home and told it would clear in time, which it did. Hope everything goes well, Ruth.  This forum and the nurses supporting it were a great help to us but unfortunately it’s no longer quite so active - a great shame. Kind regards
    • RuthN
      Hi, I’m Ruth. This is my first post  I don’t yet have a diagnosis. I’ve been offered an EUS, endoscopic ultrasound with a fine needle biopsy of a cyst in the tail of my pancreas. I was told there’s a risk of pancreatitis after this but I wasn’t given any other information about that.  So my questions are does anyone have experience of this? How soon after the procedure do you know you’ve got it, what’s the treatment, does it get better or is it permanent, and if it does resolve, how long does that take? Does it mean being in hospital?    This cyst was an incidental finding, I am 81 and really well. I just can’t decide whether to pursue this or not.    would value all opinions please. 
    • Thesea
      I actually think even just responding to a few posts has helped me in some way.  If so, that's very surprising.  I can only think that perhaps it is really hard to talk about pancreatic cancer at all ... perhaps a lot of us bottle things up even more than we otherwise might.
    • Luke1971
      Is anyone else experiencing major problems getting hold of Creon? There have long been slight issues, but the 25000 capsules have been unavailable nationally since mid-February 2024. I am assured that this won't be forever - and I can usually track down the 10000s - but it is a hugely worrying problem for those of us who need this for the rest of our lives and can't eat without it. Any tips gratefully received.
    • rhi
      She had only engaged briefly with the hospice with nurses at home. It’s not something they’ve been in touch to offer and I’m not inclined to reach out to them either. Thank you again though. I suppose having an area to vent helps in a way. I think.  
    • Thesea
      While I'm not sure if it is possible to really 'come to terms' with someone we love having a terminal disease, 11 weeks really sounds too short a period of time in which to even start doing that.   The Hospice offered me counselling.  I haven't taken up the offer as yet but am keeping it in mind.  Do you think that might possibly help you a bit?
    • rhi
      I feel the same. Still functioning, empty. Low energy and waiting on a tsunami coming which hasn’t hit yet. It’s such a strange feeling when you have loved someone so so much. Like you expect more already. Where is it? When will it come?
    • rhi
      Thanks to you both for responding. My beautiful Mum passed away on the 28th March. 1 day short of 11 weeks from her diagnoses. The last week was horrific. She suffered a stroke, her second in as many weeks. They said the best thing to do was make her comfortable and I just don’t think she was, definitely not at first.  We were never advised of the risk of strokes or, what it would have meant when they said they could make her comfortable. It was just horrific. They could have prepared us by having frank discussions but they didn’t. I suppose im just looking for an outlet. The reality hasn’t set in. It’s beginning to. I can’t begin to comprehend life without her but I have to. I just can’t believe she’s gone. It’s like I can and I can’t at the same time. I know it’s happened it’s just so unbelievable. I suppose I don’t know how to feel or who to talk to. I’m sick of crying. It’s just so heartbreaking for everyone: so bloody unfair. Everything just happened so fast. I’m so sorry you both had to go through this awful disease. It’s the worst. 💔
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