Patient Stories

PC, The rare disease

You may have heard of pancreatic cancer before, however, it is actually classed as a rare disease. Shockingly, under 7% of people diagnosed with the disease will survive just 5 years.

This is due to the symptoms being vague and hard to diagnose, as well as receiving very little funding for research. This year, on rare disease day, Pancreatic Cancer Action want to raise awareness of the disease and prove that although it is a rare disease, survival is incredibly rare, but it is possible.

PCA founder and CEO, Ali Stunt, was diagnosed with pancreatic cancer when she was just 42 years old. The tumour was thankfully caught in time for Ali to have (the Whipples) surgery, followed by chemotherapy, which is currently the only cure for the disease. 

When Ali was diagnosed, she knew nothing about pancreatic cancer, or that you could even get cancer of the pancreas. She had to source the information herself which was terrifying for her as the statistics are not favourable. 

Ali says “At the time, I had no-one to talk to who was surviving pancreatic cancer. It felt like I was the only one. I had no-one to swap notes with about how the treatments would be (especially the surgery, which is complex with many after effects), no-one I could see who was surviving ahead of me to give me the hope that I could too survive.”

 “It was an incredibly lonely and isolating experience. I couldn’t really talk to people who had other cancers as they were not facing the scary survival rate I was and their prognoses were so very different.”

“For information on my surgery, my lovely surgeon drew me a diagram to explain what was going to happen to me. It resembled abstract art and I couldn’t decipher it! Thankfully he is a far better surgeon than he is an artist! It was this experience which led me to develop proper modular patient information booklets when I founded Pancreatic Cancer Action.” 

In the UK around one in every 6,500 people are diagnosed with pancreatic cancer and it is the UK’s fifth biggest cancer killer. 

Ali is lucky to be one of the 1% of people that survive 10 years as it is incredibly rare to survive the disease for this long.

For patients to be able to get the support they need when diagnosed with a rare disease, more awareness needs to be raised about them.

After Ali had recovered, she was passionate about helping others who may be in a similar situation to her, so she founded Pancreatic Cancer Action.

If you need any support or for more information on pancreatic cancer please visit our dedicated support page