Raising Awareness of Pancreatic Cancer

23 March 2017

Pancreatic cancer has the worst survival rates of any cancer. Jean Clark says she’s ‘one of the lucky ones’. The York grandmother was diagnosed with pancreatic cancer nearly four years ago, and after receiving treatment, she’s now dedicating her life to raising awareness of the disease so more people are diagnosed earlier. She spoke to Nikki Brady about her experience.

Jean Clark is one of 540 people living with and beyond pancreatic cancer in Yorkshire. The 60-year-old from York counts herself as one of the lucky ones.

Nearly four years have passed since she was diagnosed with the disease, and she’s thankful for every day she gets to spend with her three young grandchildren.

Others are not as fortunate. Fewer people survive pancreatic cancer than any other type. Just 21% of those diagnosed with pancreatic cancer survive for one year, and sadly, just 3.3% survive for five years after diagnosis.

It’s currently the fifth biggest cause of cancer-related death in the region, and experts predict that incidence and mortality rates will significantly increase in the next 20 years.

Since retiring from her role as a home carer following her illness, Jean is now on a mission to raise awareness of the disease among politicians, charities, clinicians and the general public.

“Before I was diagnosed with pancreatic cancer, I didn’t know what or where a pancreas was. It’s incredibly important that people are aware of the disease and see their GP if they experience any symptoms,” she says.

Nearly half of pancreatic cancer patients are diagnosed with stage 4 disease – the most advanced type. When cancer is diagnosed at a late stage it can be more difficult to treat and the chance of survival is lower.

The disease is often referred to as a ‘silent killer’ because early signs and symptoms can be vague and difficult to recognise.

The most effective treatment for pancreatic cancer is surgery, but many tumours are found after they have become inoperable.

Jean was diagnosed after suffering from back pain and indigestion in June 2013.

She explains, “I was taking medication for acid reflux, and it stopped working. I felt full all the time, and then the back pain started. It stopped me in my tracks.

“I went to my GP surgery and saw a newly-qualified doctor, who was very thorough. She sent me for an endoscopy, which is procedure involving a camera that’s put down your throat.

“The camera didn’t really show anything, but as I got up I clutched my back and the doctor asked me what was wrong. I told them I had awful back ache, so they sent me for a CT scan in York and then a PET scan in Leeds.”

Jean believed she had an ulcer in her stomach and had no suspicions that it could be something more serious. So when she was eventually told she had a tumour on her pancreas, she was shocked.

She was told the tumour was inoperable because it was positioned at the top of the pancreas, and instead of surgery, she was referred for chemotherapy and radiotherapy treatment.

In October, Jean began a course of Folfirinox, a type of chemotherapy that involves a combination of four different drugs. She underwent six sessions of the treatment at York Hospital, with each session taking a total of three days.

An allergic reaction meant that Jean could only be given the treatment every three weeks instead of every fortnight. But after the third session, the tumour began to show signs of shrinkage.

“They said right from the start that the treatment would be palliative,” Jean says. “They were aiming to extend my life, rather than cure my cancer. I was told that as I was young and healthy, there was a chance that I could live considerably longer.”

Following chemotherapy, Jean had 30 sessions of radiotherapy at St James’s University Hospital in Leeds. She was required to travel every day, from Monday to Friday, for six weeks.

She said: “That was really when the fatigue set in. I’d go home and sleep for the rest of the day. My family were very supportive though, taking me to hospital and making sure I was looked after. A final scan showed that my tumour had shrunk even more. It was the best possible news.”

Jean’s tumour halved from 23mm to 12mm following chemotherapy and radiotherapy. She now undergoes regular tests to see if anything has changed. Despite the challenges of her treatment, she says she would go through it again if it meant she had more time to spend with her family.

“My grandchildren are just six, three and 18 months,” she says. “I’m desperate to see them grow up. The oldest knows that I’ve been ill and that I’m better now, and I think it’s a great message of hope for her.

“Looking back, I only really had one symptom. I’d been to see my doctor about a year before my diagnosis because I’d had a persistent cough and I was worried about lung cancer. It turned out to be caused by acid reflux. I didn’t know then that acid reflux could be a sign of pancreatic cancer.

“I’m now keen to give as much time as possible to raising awareness. There has to be a point to what I’ve been through. I don’t want to miss the opportunity to help others. It’s what keeps me going.”

Since her recovery, Jean has organised and taken part in numerous awareness and fundraising events in York. She recently became a patient representative on Yorkshire Cancer Research’s Research Advisory Panel, which ensures the research the charity funds helps more people in the region survive cancer by addressing local problems and priorities.

Despite having the worst survival rates of any cancer, research into pancreatic cancer receives less than 1% of national research funding, and this is another issue Jean is keen to change.

“Pancreatic cancer research is so underfunded,” she says. “I want to do everything I can to change this. I’m one of the lucky ones. Far too many people live months, some only weeks from diagnosis.”

Symptoms of pancreatic cancer

The first noticeable symptoms are often:

  • pain in the back or stomach area – which may come and go at first and is often worse when you lie down or after you’ve eaten
  • unexpected weight loss
  • jaundice – the most obvious sign is yellowing of the skin and whites of the eyes; it also causes your urine to be dark yellow or orange and your stools (faeces) to be pale-coloured.

Other possible symptoms include:

  • nausea and vomiting
  • bowel changes
  • fever and shivering
  • indigestion
  • blood clots

You may also develop symptoms of diabetes because it can produce chemicals that interfere with the normal effect of insulin.

If you notice any of the symptoms above, please see your GP.

Pancreatic cancer statistics

  • 771 people in Yorkshire were diagnosed with pancreatic cancer in 2014.
  • 745 people in Yorkshire died from pancreatic cancer in 2014.
  • There are around 540 people living with and beyond pancreatic cancer in Yorkshire. Around half of these patients were diagnosed less than one year ago.
  • Pancreatic cancer in more common in men than women.
  • Most cases are seen in those aged 50 or over.
  • Around 50% of pancreatic cancers are diagnosed at a late stage.
  • Nearly half of all cases are diagnosed through emergency routes, such as A&E or emergency GP referral. Patients diagnosed with cancer through an emergency route are more likely to be diagnosed at a late stage, which can mean that treatment options are limited and chances of survival are lower.
  • Pancreatic cancer has hit headlines in recent years following the deaths of a number of celebrities who suffered from the disease, including Apple co-founder Steve Jobs and actors Sir John Hurt, Patrick Swayze and Alan Rickman.

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