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Case study - Karen

 Karen 

"If this test were to be successful, it would be absolutely amazing and right now we need something amazing."

My mother’s death due to pancreatic cancer was only confirmed by a post-mortem. Despite repeated and persistent visits to the GP in the many months leading up to her death, the vague symptoms she presented with did not lead to a diagnosis. Ultimately, she was admitted to hospital through A and E and died some days later. I so wish that this were an isolated incident, but from patient stories I have heard and news headlines I have seen since my mother’s death I know it isn’t. Most patients’ diagnoses are made too late for surgery, and many too late for any treatment, so early diagnosis for pancreatic cancer has the potential to make a phenomenal difference.

Once we had my mother’s cause of death, and because my grandmother and grandfather have also died of pancreatic cancer, I became involved in the EUROPAC screening programme. I have an endoscopic ultrasound test every year and am profoundly grateful to be in the screening programme: it’s literally a lifeline, and I say this because screening has already picked up a pancreatic tumour in another close family member who is thankfully still alive. 

I have a pragmatic approach to my annual test. It’s invasive and so not pleasant, but I know I need it. I want it to be thorough, but of course I don’t want it to find anything. The wait for the results is an anxious one and the relief on hearing the ‘all clear’ is huge, especially as I approach the age (mid 50s) my mother was when she started having symptoms. For me, the ability to rule in or rule out pancreatic cancer with a simple urine test and potentially avoid an unneeded invasive procedure would be wonderful.

When I read about the prognosis for 5- and 10-year survival of pancreatic cancer, the figures are grim. We’re due a breakthrough – and the sooner the better. As I understand it, one way to make a big impact on these figures is to diagnose as early as possible when there are a greater number of treatment options. I’ve taken part in other research projects and I will jump at the chance to be involved in the UroPanc clinical study.

Karen, from Cheshire