A Newport resident, whose dad and uncle died from the deadliest common cancer, is sharing her story to highlight the lack of progress in developing treatments as part of Pancreatic Cancer UK’s campaign, Demand Survival Now, launching today (Wednesday 3rd of June). Neither Carys Thomas’ dad nor uncle had the option to join a clinical trial, and a new poll by the charity reveals just 12% of people with the disease are given a chance to do so (1).
Carys’ dad, Paul was diagnosed with pancreatic cancer in summer 2022. He was diagnosed too late to have surgery, the only potential cure, a treatment which just 10% of patients receive(2). Despite being in good health, clinical trials were not discussed with Paul.
Paul was instead offered life-extending chemotherapy. Chemotherapy is one of the few existing treatments for pancreatic cancer, but it is very toxic and people are often too unwell to tolerate it. Paul quickly became weak and lost weight after starting treatment. He went from running half-marathons to struggling to get out of bed within weeks. He died in May 2023, soon after his 60th birthday, surviving nine months from diagnosis.
Carys’ uncle, David was unable to have any treatment and died just four months after diagnosis. Like David, 7 in 10 people with pancreatic cancer receive no treatment at all (3). Tragically, half of people with the disease die within three months of their diagnosis. Successive governments have failed to adequately invest in treatment research, there have been just three breakthroughs made in the last 100 years.
Carys, 31 said:
“At the moment, there is a vacuum of hope when you receive a pancreatic cancer diagnosis. It’s often a death sentence. Dad had more time than my uncle because the chemo extended his life, but his final months weren’t enjoyable. It wasn’t living; just prolonged suffering. I wish that time could have been more fulfilling for him. For us.”
As part of the campaign, Pancreatic Cancer UK polled 1,117 people affected by the disease, which is the deadliest common cancer in the UK. The findings revealed:
- Only 9% of patients had genetic testing of their blood, saliva or tumour tissue to guide treatment or access to clinical trials (4)
- 40% of patients had to travel more than 20 miles to take part in a trial (5)
- 41% of patients said that finding information on clinical trials was difficult (6)
New, more effective treatment options, with fewer harmful side effects are desperately needed. However, clinical trials in the UK are often unable to open quickly, at scale, and it is difficult to consistently connect eligible patients with the limited number of trials. Speed and coordination are vital to get more patients with pancreatic cancer on clinical trials. The disease is typically diagnosed at a late stage, and patients can deteriorate quickly, meaning even those enrolled on a trial can ultimately become too unwell to participate.
Carys said:
“Had my dad been given the option to join a clinical trial, perhaps he would have felt better, and we could have done more of the things he hadn’t yet gotten around to. Perhaps we’d have had more time with him, and more hope instead of helplessness. More people diagnosed with this devastating disease should have the chance to try new, kinder treatments, so they can make the best of whatever time they have left.”
Decades of underfunding by successive governments have stifled the delivery of treatment breakthroughs. Survival rates for pancreatic cancer have barely improved in 50 years, while dramatic progress has been made in many other cancers. Sustained research investment in leukaemia (a type of blood cancer affecting a similar number of people annually) has seen survival increase 16% (7). The charity is confident the same transformation is possible for pancreatic cancer, if the disease is prioritised.
The new National Cancer Plan for England and the recently passed Rare Cancers Act offer hope for the future. However, Pancreatic Cancer UK is calling on UK governments to act now and help fast-track more patients onto clinical trials. The charity wants to see more support for clinical trials infrastructure and greater use of genomic testing to analyse patients’ individual tumour samples, blood or saliva. Offering genomic testing at the earliest opportunity would help match patients to suitable clinical trials, allowing them to benefit from innovative treatments in trials today and paving the way for these personalised treatments to become available on the NHS in future.
Through its ‘Demand Survival Now’ campaign, the charity is calling on the public to demand all governments across the UK urgently take action to deliver:
- More chances for patients: Personalising treatment by testing tumours whenever possible
- More progress: A system that fast-tracks people onto clinical trials
- More lives saved: Funding for research to support future pancreatic cancer treatments and trials
The charity is urging people to support the ‘Demand Survival Now’ campaign by visiting: www.pancreaticcancer.org.uk/dsn
Diana Jupp, CEO of Pancreatic Cancer UK, said:
“Access to clinical trials is appallingly low for pancreatic cancer and is denying too many people the possibility of more precious time with their loved ones. Persistent underfunding has stifled innovation and delivered just three improvements to treatments in the last century. The few treatments we do have are gruelling, and often too toxic for many patients to tolerate.
“The new National Cancer Plan is genuinely ambitious for less survivable cancers and is a welcome blueprint that offers real hope for the future. But action is needed today. Seven in ten people with pancreatic cancer receive no treatment at all – not even chemotherapy. That is totally unacceptable.
“Change is possible if this devastating disease is prioritised, the dramatic improvements in survival for other cancers are proof of that. People with pancreatic cancer deserve more progress. More treatment breakthroughs. They deserve a chance to survive.”
