Pancreatic cancer: Life-changing medication not given to 40%

By Dafydd Morgan
BBC News

Published
Media caption,
Mark Davies was just 40 when he was diagnosed with terminal pancreatic cancer

Two-fifths of pancreatic cancer patients are not being prescribed medication recommended to improve their lives, a charity has warned.

A lack of awareness of pancreatic enzyme replacement therapy (PERT) means they are not being offered it.

Without it, eating can be painful, resulting in little appetite and weight loss.

The Welsh government said it expects PERT to be offered in line with professional guidance.

According to Pancreatic Cancer UK, half of people with the disease die within three months of diagnosis.

Just 5.7% of people diagnosed with pancreatic cancer in Wales survive five years.

Hannah Davies, of Knighton in Powys, lost her husband Mark to the disease in 2020.

"Mark was a healthy 40-year-old man," the 38-year-old said.

"He was a very, very hands on dad to our two boys, Freddie and Rupert.

"He was a wonderful husband. Very lucky that we found each other in life."

Image source, Hannah Davies
Image caption,
Mark Davies, pictured with children Freddie and Rupert and wife Hannah, died from pancreatic cancer in 2020

In March 2020 Mark began suffering stomach pains, tiredness and appetite loss.

Between April and June he called a doctor 19 times about his symptoms.

In July he went to hospital.

A scan and biopsy confirmed he had pancreatic cancer.

"He did confirm that due to the size of the tumour that it was inoperable, and that it would be terminal as well," Ms Davies said.

Pancreatic cancer makes eating painful because enzymes made by the pancreas to help us digest food don't reach the bowel.

PERT resolves this by replacing those missing enzymes.

Image source, Hannah Davies
Image caption,
Without the drug, eating can be painful, resulting in little appetite and weight loss

The change when it was first given to Mark was "unbelievable".

Ms Davies said: "I remember, he had cheese on toast, simple.

"This was a real foodie, who really loved his food.

"But to see him sit there and have some cheese on toast and he was like, 'oh my God this is great, I'm able to eat this'."

"It gave us memories of being able to eat together as a family that we would never have had if he didn't have PERT medication."

Despite costing just £7 a day only 63% of pancreatic cancer patients in Wales are prescribed PERT, according to Pancreatic Cancer UK.

The charity's Anna Jewell said: "It really seems to be awareness of needing to get these tablets to people with pancreatic cancer and awareness and understanding of the fact that they will become very malnourished and not be able to tolerate treatment if they don't get access to these tablets."

Image source, Hannah Davies
Image caption,
A lack awareness of means cancer sufferers are often not offered the drug

Of those diagnosed with pancreatic cancer, 80% are at a stage when lifesaving treatment is not possible.

"But here we have something really simple," Ms Jewell said.

"A simple tablet that is available, that isn't costly, that can really make a difference, and a significant difference, in people's quality of life when they've been diagnosed with pancreatic cancer.

"So it's just so crucial that we get these tablets to people."

Royal College of Surgeons pancreatic cancer lead Keith Roberts published a study in 2018 comparing patients who had PERT with those who did not.

"It didn't matter what the scenario was," he said.

"If you looked at people having surgery, people having chemotherapy, people having no treatment at all, the survival was pretty much twice as long in the group that received PERT."

Without it patients faced losing muscle and wasting away.

Image caption,
"A simple tablet that is available, that isn't costly," Hannah said

"If you're not getting the goodness from your food how can you get through treatment and how can you fight this cancer?" said Mr Roberts.

The Welsh government said health boards and trusts should provide PERT in line with guidance from the National Institute for Health and Care Excellence (NICE) and as agreed by the NHS in Wales.

"The Wales Cancer Network has also raised awareness of the importance of PERT prescribing," a spokesman said.

Related Topics