Pancreatic cancer: lending a listening ear

‘Many of the people who call our helpline are distressed and anxious. We welcome anyone affected by pancreatic cancer and lots of callers are relatives who are quite protective of family members who have just been diagnosed and will try to shield them from some of the statistics that may be discovered on websites.

They have often looked up ‘pancreatic cancer’ on the internet and seen the survival statistics. These can make pretty grim reading – five per cent of people diagnosed with pancreatic cancer in the UK will live for five years or more after diagnosis. Those whose cancer has spread to other parts of the body, the average survival is between 2-6 months and as we are aware is variable with treatment options. [Cancer Research UK figures 2015]

Sadly, we know that 80 per cent of people are diagnosed at a late stage when pancreatic cancer is advanced. The latest figures show that 47 per cent of people with pancreatic cancer are diagnosed via the A&E route, most frequently with symptoms including jaundice and severe pain. This is because early symptoms of the disease are often missed. Back pain is a common symptom in pancreatic cancer, this may be due to the tumour pressing on the coeliac plexus or involving the nerves in this area.  But who hasn’t had back pain at one time or other? Patients may ignore it completely and GPs may simply suggest rest and OTC remedies.

Other early signs are loss of appetite, indigestion, bloating after meals, or change of bowel habits – again easily confused with a host of other simple problems. We have heard of people who have no other symptoms than fatigue.

Without a screening programme for concerned people and those at risk (the disease has increased links to age, obesity and smoking), it is difficult to ensure that patients are diagnosed early and highlights the importance of symptoms and awareness campaigns. Pancreatic Cancer UK has recently conducted a survey which found that three quarters of people in the UK can’t name a single symptom of pancreatic cancer. This is extremely worrying, as it may delay people being diagnosed. Ongoing research studies should report soon and we hope that this will make a screening programme more likely.

Although pancreatic cancer is one of the forms of cancer with poorer outcomes, it is important to encourage people with late-stage disease that there can be positive outcomes. For a start, statistics are only numbers. There are people who live long healthy lives and it is important to highlight the aspects that can improve their quality of life whilst living with this disease.

For example, nutrition is key. The pancreas is responsible for producing enzymes that aid digestion and without these enzymes, the body finds it difficult to break down food, especially fats and protein. One thing that can make an immediate difference, within days, is prescribing pancreatic enzyme supplements. The enzyme supplements work in the same manner as intrinsic pancreatic enzymes and when taken correctly will have a positive effect within 2-3 days.  This often involves improving appetite issues (i.e. loss of appetite, taste changes), increasing weight gain, decrease in indigestion and post-prandial bloating, and improving bowel problems associated with the lack of pancreatic enzymes (i.e. offensive flatulence, loose stools, urgency).

One of the simple ways of managing loss of appetite is having small meals regularly throughout the day – little and often. Part of our job is to work in community with health professionals, dieticians, patients and their carers through our education and information programmes and we find that simple changes can really make a big difference for patients.

We encourage discussions on our online forum for patients and carers and we run information days throughout the country for both health care professionals and patient/carer groups. We know that giving information to people is important, it is about empowering them so that they feel involved in their care and able to make their own informed decisions.

Sometimes, it can be difficult hearing stories of hardship and difficult times from people who are facing this disease. It can be upsetting. There are four nurses on our team and we work closely together and support each other as peers along with clinical supervision from a qualified counsellor.

We all feel incredibly privileged and humbled to be able to do this kind of work and provide support, comfort and guidance.

Learn more about the disease and its symptoms by taking part in the charity’s new symptoms quiz at www.pancreaticcancer.org.uk/symptomsquiz

If you or someone you know needs expert, personalised support or information,  please call the Pancreatic Cancer UK Support Line (Freephone 0808 801 0707) or visit www.pancreaticcancer.org.uk/support

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