It’s a word that you don’t use every day. It means very unusual or remarkable and that’s maybe why we don’t use it all the time. Maybe there really isn’t the need to use extraordinary very often, maybe there aren’t many unusual or remarkable things.

Last week I spent time at a Pancreatic Cancer UK study day, a day full of healthcare professionals, sharing their commitment, passion and enthusiasm to help ease the pain and burden for those diagnosed with the disease. They are all truly extraordinary people.

At the start of the day the context was set by a rundown of the statistics that relate to the disease, statistics that I know well, statistics that I quote often, statistics that break my heart as I understand what being one of those statistics is means. They are an extraordinary set of statistics, a set of statistics that killed the most extraordinary man called Seth Goodburn

Last week I found it extraordinarily upsetting when I heard the stark statistics read out loud. It was as if the process of hearing them from someone else’s voice makes them more poignant and in fact more extraordinary. The distance and objectivity that listening rather than talking can create.

It is so difficult to believe in the 21st century, a century where the survival rates of most other cancers have increased but where the extraordinary fact that for forty years pancreatic has been at the bottom of the graph for survival rates remains. It’s even more extraordinary that it will stay there, because the fact is that in the UK pancreatic cancer research funding gets less than 2% of the cancer research budget.

There many other extraordinary things about pancreatic cancer

  • 5th biggest cancer killer
  • Predicted to move to the 4th biggest cancer killer by 2026
  • 11th most common cancer
  • 45% of people are diagnosed at A and E
  • 66% of people diagnosed get no treatment
  • 24% of people diagnosed survive for 1 year
  • 7% (Inc neuroendocrine tumours) of people diagnosed survive for 5 years
  • 1% of people diagnosed survive for 10 years
  • 10,000 people are diagnosed every year
  • 9,800 people die each year from pancreatic cancer
  • 60% of patients are diagnosed when the disease is at stage 3 or 4

To highlight how extraordinary pancreatic cancer is, I wrote a letter to the Secretary of State for Health and Social Care to ask for information about how the governments priority process is defined for allocating research funding to cancers. I did this because recently there have been investments from the government into other cancers, where the extraordinary fact is that the survival rates for those cancers are considerable higher more than double at 1, 5 and 10 years than they are for pancreatic cancer. The government have also invested in earlier diagnosis that will lead to 55,000 people being diagnosed with cancer earlier. Sadly, the extraordinary fact is that with the focus its doubtful if many of the 55,000 people will be people who have pancreatic cancer. A disease where 66% of people get no treatment and where 60% of people diagnosed are already at stage 3 or 4. It is extraordinary that there is NO investment within that government funding in pancreatic cancer.

It was also extraordinary that my letter took so long to get a reply over nine weeks, a reply that really didn’t address or answer the questions posed. Maybe my questions were in the too hard box, maybe my questions were ignored and side-lined in the same way as pancreatic cancer has been for the last forty years.

Pancreatic cancer needs extraordinary action, extraordinary investment, extraordinary focus and extraordinary resource to ensure that it does not continue to be an exraordinary cancer.

Pancreatic cancer needs to become ordinary it needs to be a cancer where a diagnosis isn’t a death sentence, a cancer where there are treatments, a cancer that becomes a survivable cancer. Pancreatic cancer must stop being remarkable and the survival statistics need to be less unusual.

Please support me in November which is pancreatic cancer awareness month to highlight the extraordinary nature of this disease, with a view to making pancreatic cancer less remarkable and the treatment and survival much more usual.

We will be producing a series of Purple Rainbow Pancreatic Cancer Podcasts throughout November with contributions from some of pancreatic cancers leading nurses, clinicians, researchers and allied health professionals as well as patients and families. You will find them on the link from 1st November #sethslegacy.                                         

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