Raising awareness of Pancreatic Cancer

Work Stream Chair: Ali Stunt, Pancreatic Cancer Action UK

Pancreatic Cancer heatmap now online!

Following several months of development, we are happy to unveil the PCE heatmap. Conceived as a powerful tool to compare the pancreatic cancer patients’ situation in each European country, the heatmap provides information on awareness situation, national policy, diagnosis, research… We are always looking for more data and information to enrich the heatmap. Should you want to add some data for your country, please contact directly the Secretariat.

Visit the PCE heatmap ›

One of the biggest obstacles to taking action against pancreatic cancer is a lack of awareness of the disease itself and the challenges faced by patients. Pancreatic cancer is often referred to as a “forgotten cancer”. A key goal of the Platform is to ensure that this cancer is not forgotten by policy makers, so that appropriate policies can be implemented.

  • Pancreatic cancer is currently the 4th biggest cause of death by cancer in Europe1. If no action is taken, it is expected to be the 2nd leading cause of cancer death by 20202.
  • Pancreatic cancer has the lowest survival rate of all cancers, and is the only cancer whose mortality is on the rise in both sexes3.

While it represented 16.8% of the mortality from the deadliest cancers in 2012, pancreatic cancer only represented 3.4% of parliamentary questions on these cancers tabled in the European Parliament between 2009 and 2014.

Although pancreatic cancer is the 4th biggest cause of death from cancer there is no mention of its burden or any policies related to it in the European Commission’s 2014 Report on “Cancer screening in the European Union” Between 1975 and 2011, the incidence and mortality of breast cancer decreased by 43%, due to the uptake of mammographic screening and improvements in therapy. Thanks to improved screening and treatment, survival rates in prostate cancer, breast cancer and colorectal cancer have significantly increased.

The discrepancy between the severity and mortality of pancreatic cancer and its political prioritisation shows the urging need to raise this disease high on the policy and political agenda. Examples of other cancers have shown that political action can actually make a difference for patients, and that it is time to take similar action for pancreatic cancer.

10 things you need to know
about pancreatic cancer!

Show your support: sign the PC Declaration

Pancreatic Cancer Declaration by the European Multi-Stakeholder Platform on Pancreatic Cancer outlines what action is needed to halt this violent and deadly disease.

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Improving Diagnosis on Pancreatic Cancer

Work Stream Chair: Prof. Matthias Löhr, Karolinska Institutet, Sweden

Today, a diagnosis of pancreatic cancer is generally associated with a death sentence and few patients are alive one year after diagnosis, while an earlier diagnosis could help reduce the mortality of the disease. If diagnosed in time, chances of survival increase. The aim of the diagnosis Work Stream is to raise awareness of the main symptoms and early signs of pancreatic cancer among the general population and the medical community in order to help achieve earlier diagnostics.

  • Due to severe underdiagnosis, the overall median survival for a person diagnosed with metastatic pancreatic cancer is 4.6 months3. Pancreatic cancer has the lowest survival rate of all cancers. Patients affected with pancreatic cancer lose 98% of their healthy life expectancy at the point of diagnosis3.
  • Only 20% of all cases of pancreatic cancer are operable. A prime reason for inability to treat patients is late diagnosis4.
  • Today, a diagnosis of pancreatic cancer is generally associated with a death sentence and few patients are alive one year after diagnosis, while an earlier diagnosis could help reduce the mortality of the disease. If diagnosed in time, chances of survival increase.

The diagnosis of pancreatic cancer usually starts with a general practitioner visit, and is followed by a referral to a specialist. Tests and investigations (blood tests, ultrasound scan and radiography scans, biopsy) are run to confirm diagnosis. The main symptoms of pancreatic cancer are:

In order to support the improvement of early diagnosis of pancreatic cancer, the Platform has developed the following documents:

If you persistently experience two or more of these symptoms which are not normal for you, you should get checked by your GP because these symptoms may indicate pancreatic cancer.


Ali Stunt

Diagnosed in 2007, Ali Stunt is one of the few pancreatic cancer surviving patients. Saved by an early diagnosis of the disease, Ali is the Founder and Chief Executive of Pancreatic Cancer Action (UK), an association devoted to encourage early diagnosis for the illness.


Matthias Löhr

Professor of Medicine and senior physician at Karolinska Institutet (Stockholm, Sweden) Department of Clinical Science, Intervention and Technology, Prof. Löhr is one of the leading European pancreatic cancer experts, as well as UEG (United European Gastroenterology) spokesperson.

  1. Malvezzi M, Bertuccio P, Levi F, La Vecchia C, Negri E, et al. European cancer mortality predictions for the year 2013. Annals of Oncol. 2013; 24:792-800
  2. Pancreatic Cancer Action Network. The alarming rise of pancreatic cancer deaths in The United States: Why we need to stem the tide today, 2012. www.pancan.org/wp-content/uploads/2013/01/incidence_report_2012_executive_summary.pdf [Last accessed April 2014]
  3. Health Consumer Powerhouse, Euro Pancreatic Cancer Index, 2014, ISBN 978-91-980687-3-3
  4. Carrato A, Falcone A, Ducreux, M, Valle, J, Parnaby A, Djazouli K, Alnwick-Allu K, Hutchings A, Palaska C, Parthenaki I. A systematic review of the burden of pancreatic cancer in Europe: Real-world impact on survival, quality-of-life, and costs. J Gastrointest Cancer 2015 Sep;46(3):201-11

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