Non diagnosis

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Hello. My wife has had suspected pancreatic cancer since August last year. Despite scans and attempted biopsies the consultants, we have had a few, cannot confirm diagnosis. They say they are 95% certain she has pancreatic cancer and given a prognosis of a few months and say there is nothing else they can do. Over the last few months she has been in and out of hospital with UTI's and delirium. Despite the non diagnosis she is being treated as if she is dying of cancer.

Is anyone else out there in the same position?

  • Hi Bonio welcome to the forum. Why are they treating her for suspected pancreatic cancer when no confirmed diagnosis has been made? Something doesn't seem quite right there. Now they are saying they are not trying and the prognosis is poor when there is still no confirmed diagnosis? 

    Are you able to make contact with the hospital and ask to meet with one of the Consultants as a priority and ask them to explain why this is all happening  for you both. I know that Pancreatic Cancer can be hard to detect in its early stages but if they are 95% certain this is what it is why are they not doing Ultrasound scans, CT scans and /or an MRI which usually picks up any abnormalities. Personally I would be pushing  very hard to get answers to this and not leaving until you do.   I dont know enough to know whether the UTI and delirium are connected or not. Maybe time to speak with the Patient experience team and see if you can get a way through this for you both and some definitive answers. 

    Please do let us know how you get on and if you need any advice or want to talk things through with someone then please do contact the Macmillan Line who are great and may be able to offer some guidance on who is best to speak with. 08088080000. 

    gail

     
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  • Without going into a great long story of how we got to where we are today the bottom line is this,

    At the last meeting with a consultant he said they are aware, after the latest scan, that there is something in the head of the pancreas which has increased slightly since a scan some 10 weeks previously. After two failed attempts to get a sample from within the pancreas they are not prepared to investigate further. If or when my wife becomes jaundiced they will take an interest. We are told there are many people in this undiagnosed limbo situation.

    My question is, are there others out there in this situation, are they being offered support from the NHS, how are they getting on accessing any mental health support etc. I am finding many doors are closed to us because we don't have a definitive diagnosis.

    • Many thanks for your reply by the way!!