As a month dedicated to raising awareness of the disease which has the lowest survival rate of common cancers comes to an end, we asked specialist nurse Dianne Dobson some questions.
Dianne Dobson is a nurse specialist for charity Pancreatic Cancer UK, offering support and information to people affected by pancreatic cancer on a daily basis via the charity’s freephone support line (0808 801 0707), which is the only one of its kind in the UK.
Dianne worked as an intensive care nurse and liver transplant coordinator at a London hospital before joining Pancreatic Cancer UK. She and her colleagues support patients, their loved ones and carers, providing information about signs and symptoms, diagnosis, surgery and other potential treatments, side-effects of treatments, and living with the disease.
What are the symptoms and signs of pancreatic cancer?
The symptoms include tummy pain which can spread to the back, indigestion, significant unexplained weight loss, a change in bowel pattern which may include oily floating poo, and yellow skin or eyes or itchy skin.
We suggest to patients that if they have jaundice, they visit their GP as soon as possible, and people who have any of the other symptoms, unexplained and lasting for more than four weeks should also visit their GP.
“Pancreatic cancer currently has the worst survival rate of the 21 most common cancers in the UK. However, we are positive about the future and determined that our work can make a difference.”
More information about signs and symptoms can be found on our website. People can also call me or one of my nursing colleagues on the support line with any questions about symptoms.
Why is the survival rate so low?
The symptoms of pancreatic cancer, such as tummy pain, are quite vague and can often be attributed to something else such as gallstones (and sometimes pancreatitis, gastritis or hepatitis). Tragically, the disease is often diagnosed when it has spread to other parts of the body and is too advanced for surgery, the only potential curative treatment.
Pancreatic cancer also lags far behind other cancers in terms of funding it has received for research into causes and treatments. Only 1.4 per cent of cancer research funding in the UK is directed towards pancreatic cancer.
What are the treatments currently available?
The Whipple’s procedure – an operation carried out under general anaesthetic which takes about four to seven hours – is the most common type of surgery for pancreatic cancer.
There are other treatments for pancreatic cancer, which can extend the lives of people with advanced disease, such as standard chemotherapy. There are other treatment options available through clinical trials.
What are the causes of pancreatic cancer?
We still don’t know what causes the disease, but smoking is an established risk factor. A study published in 2011 estimated that nearly a third of pancreatic cancer cases in the UK are caused by smoking.
We also know that people with type I and type II diabetes have double the risk of developing pancreatic cancer and those with a condition called chronic pancreatitis, which is long term inflammation of the pancreas, also have an increased risk of developing pancreatic cancer.
What is the current state of research into the disease?
Pancreatic cancer currently has the worst survival rate of all the 21 most common cancers in the UK, with just four per cent of people surviving for five years or more after diagnosis. However, we are positive about the future and determined that our work can make a difference to this, because we are seeing a slow, slight increase in survival rates.
To see significant change, there are several things that must happen urgently. Government and other big research funders must change the percentage of cancer research funding if we are to find a new treatment or screening test for the disease.
We must also have a major, government-funded public awareness campaign about pancreatic cancer. GPs need more training and support, and NHS England’s referral guidelines need to include more symptoms of pancreatic cancer and ensure people with possible symptoms get referred for tests quickly.
What made you specialise in treating/supporting people with pancreatic cancer?
I am passionate about supporting patients and families with this disease. This is a life-changing condition, not only for the patient, but also those nearest and dearest to them. We are slowly seeing some positive changes in treatment options for these patients and it is amazing to be involved in this process. For many of our callers it may be the simplest advice that will make a huge difference to them. To be able to make a positive change in a person’s life at one of the saddest times is a very rewarding experience.
What are the common reasons for people calling the Pancreatic Cancer UK helpline?
We often find that people really need a ‘listening ear’, and to speak to someone that is outside of their normal family circle to listen to them and understand their concerns. Speaking to us means that people feel they can be honest and discuss issues that may be too difficult to discuss with those dearest to them.
“Only 1.4 per cent of cancer research funding in the UK is directed towards pancreatic cancer.”
It’s important that people with pancreatic cancer are given the right information so that they are able to make informed decisions about their treatment and ongoing care. Our aim is also to give patients and their families realistic hope and support.
What are the key elements of support which Pancreatic Cancer UK provides to patients and their families/carers?
The main way we offer patients and families support is over the phone via the charity’s support line, but we also have an email service. Many people find it easier to deal with emails as it may be easier to keep their emotions ‘in check’ rather than speaking to someone over the phone.
Our website, www.pancreaticcancer.org.uk, also has a huge amount of useful information for people directly affected by the disease. There is also a supportive online forum which lots of patients and carers find useful.
How is Pancreatic Cancer UK hoping to develop its services – what’s the next thing on the to-do list?
We want to be able to reach patients and carers with our support and information in their local areas. That’s why this year, we have been piloting face to face services offering support directly in local communities for the first time, in the West Midlands and Northern Ireland.
People affected by pancreatic cancer were invited to meet specialist nurses from the charity, like myself, and talk through any questions or worries and find out more about how we could help them.
About pancreatic cancer:
• One person dies of pancreatic cancer every hour.
• The disease has the lowest survival rate of all the common cancers, with just four per cent of people living for five years or more after diagnosis, and just one per cent surviving 10 years.
• Five- and 10-year survival for pancreatic cancer has improved very little since the early 1970s.
• Around 8,800 people are diagnosed with pancreatic cancer per year in the UK. That’s one every hour.
• Pancreatic cancer is the fifth most common cause of cancer death in the UK.
• Pancreatic cancer is predicted to become the fourth largest cancer killer (overtaking breast cancer) by 2030.
(Cancer Research UK)
About Pancreatic Cancer UK
• Pancreatic Cancer UK is the only national charity fighting pancreatic cancer on all fronts, offering support, information, running campaigns and funding vital research.
• The charity run the UK’s only pancreatic cancer-dedicated freephone support line, which is staffed by expert specialist nurses: 0808 801 0707.
• Pancreatic Cancer UK fund research into early diagnosis of pancreatic cancer as well as research into developing new treatments.
• For further information on pancreatic cancer and the support and services available for patients and their carers, visit www.pancreaticcancer.org.uk.
Read how Hannah McNeil, who was diagnosed with pancreatic cancer almost a year ago, is living with the disease here.