01/03/2018 00:02 GMT

7 In 10 Pancreatic Cancer Patients Not Receiving Potentially Life-Saving Treatment

Delayed diagnosis of the disease is part of the reason.

Only 34% of people with pancreatic cancer receive some kind of surgery, chemotherapy or radiotherapy, the treatments most likely to allow them to live for longer or save their lives, Pancreatic Cancer UK has found.

The new analysis of data by the charity uncovered patients with all other common cancers are twice as likely (69%) to receive these life-extending or potentially life-saving treatments.

Currently the majority (80%) of people with pancreatic cancer will not survive beyond a year after diagnosis. The charity said delayed diagnosis is part of the reason almost seven in 10 patients are not offered these three treatments. If pancreatic cancer is only detected at an advanced stage, treatments may not be effective. 

Now, Pancreatic Cancer UK has teamed up with families affected by the disease to call for change in the way people are diagnosed, treated and cared for, so they have the best chance of living for longer or surviving.

Pancreatic Cancer UK
Abi Tilley and her mum Anne, who died from pancreatic cancer in 2016.  

Pancreatic cancer often remains undetected by patients until it is at an advanced stage, but the most common symptom is pain around the upper abdomen, which might also spread to the back. 

Other possible symptoms include: nausea and vomiting, fever and shivering, indigestion, bowel changes, blood clots, and extreme tiredness.

Currently, 80% of pancreatic cancer patients are diagnosed at an advanced stage, meaning it is sometimes too late for surgery, chemotherapy or radiotherapy to be effective. 

According to Pancreatic Cancer UK, there are very few life-extending treatments suitable for advanced patients, and access to treatments varies across the UK. Very few clinical trials are conducted for pancreatic cancer – just 4.6% of pancreatic cancer patients are treated as part of a clinical trial.

Abi Tilley, 23, from Sleaford in Lincolnshire, lost her mother Anne, 56, to pancreatic cancer in October 2016. By the time she was diagnosed, Anne’s cancer had spread to her liver and spine and was too far advanced for treatment to be possible. Anne died just six weeks after she was diagnosed.

“To be told at the age of 22 that there is nothing that can be done to help your best friend is truly heart-breaking. Our experience with pancreatic cancer was just so terrible, but sadly every day another family has to experience what we went through,” Abi said: “This really needs to change. To this day, I wish mum’s diagnosis had come at a time when treatment options were available to her, because it could have given us more time.”

On 1 March, Pancreatic Cancer UK will bring together doctors, nurses, researchers, MPs, patients and families its ‘Inspiring Change in Care’ summit, to call for improvements in diagnosis, care and treatment, 

The charity will also showcase innovative pancreatic cancer care from around the UK, as part of its new campaign Promoting Innovative Practice.

Diana Jupp, chief executive of Pancreatic Cancer UK, said: “Having a diagnosis of pancreatic cancer is devastating for all patients, but seven in 10 are then completely shattered by the news that there is no way of treating their cancer. All they are offered is some relief for their symptoms, and they face an awful prognosis. We must now bring about a new dawn for people affected by the disease. More patients must receive treatment which will give them the best chance of living for longer, or surviving – and everyone diagnosed must receive the best possible treatment and care for them.

“To achieve this step change for people affected, we need patients to be diagnosed earlier and more treatment options for those who are diagnosed.”

She added that the recently published National Institute for Health and Care Excellence (NICE) guidelines on the management of the disease must be followed, to ensure “variations in treatment and care are a thing of the past”.

“We need research funders to invest in pancreatic cancer to bring about more clinical trials. Everyone affected by pancreatic cancer deserves this progress, and we must bring about this vital change together,” she said.

TV and radio presenter Nicholas Owen lost his father to pancreatic cancer, and will lead a discussion at the charity’s summit. “Having lost my father to pancreatic cancer, I know only too well how much change is needed for all of us affected by this disease,” he said ahead of the event.

“My father died in 1981 and since then, there have been very few new treatments introduced and precious little progress in the way that people with the disease are cared for. That must urgently change, and I am very proud to be a part of a movement paving the way towards that.”