It’s the 9th most common cancer in the UK.(1) It’s also the 5th biggest cancer killer, taking the life of 1 person every hour and is predicted to overtake breast cancer in 4th place within the next 8 years. It has the worst survival rate of the 21 most common cancers.(2) Of those diagnosed, a staggering 1 in 4 won’t survive a month and 3 in 4 won’t survive a year.(3) It took the lives of Patrick Swayze, Steve Jobs, Alan Rickman, Ruth Bader Ginsburg, Aretha Franklin, and… my mom.(4,5)
If you didn’t know it was pancreatic cancer – if pancreatic cancer wasn’t even on your radar – you’re not alone. It should be notorious, but it’s not; awareness, sadly, doesn’t match up to these stark statistics. In a survey of the UK public, 69% knew nothing about it and 74% were unable to name a single symptom.(6) In this instance, knowledge isn’t just power, it’s survival. Early diagnosis, driven by symptom recognition, is critical to improving survival outcomes of pancreatic cancer.(6,7) However, around 80% of patients with pancreatic cancer are diagnosed at a point when the disease has spread and when surgery – their only chance for a cure – is no longer an option.(8)
My mother spent months trying to convince doctors that something was wrong; she was “too young” and “too healthy” for them to be worried. She was 46 and led an incredibly healthy lifestyle – she didn’t smoke or even drink, her diet was impeccable, and she exercised regularly. Sadly, those months were all it took for the cancer to spread from her pancreas and become terminal. She was not alone in this: over 40% of patients visit their GP three times or more before even being referred to hospital and, more worryingly, 16% of patients have to visit their GP or hospital seven or more times before the diagnosis is made.(2)
Once it spread, the effects were devastating – she didn’t make it to her 47th birthday. The only thing she complained about, through the pain, despite facing her imminent death and losing the independence she held dear, was missing out on all the milestones in mine and my three sisters’ lives. I was 6 years old, and my eldest sister was 19 – there were many to miss, and each one weighs heavy on us to this day. During one of her extended stays in the hospital, I still remember waking my Dad in the middle of the night crying because I wanted to see her. I was young – I had no idea how much worse things would get. I didn’t know that facing one night without her would soon become an entire lifetime.
When I heard that this year’s campaign for World Cancer Day was ‘Close the Care Gap’, it got me thinking.(9) Although the delayed diagnosis was a failing – and one that costs the lives of so many people with pancreatic cancer – we were privileged in terms of the medical care to which we had access. My parents were even in a financial position to be able to travel from Saudi Arabia to the Mayo Clinic in New York to seek the highest quality of care. However, this still wasn’t enough to save her, so I can only imagine how bleak the chances are for those who are in a more disadvantaged position.
The problem is that pancreatic cancer itself is a care gap. Sadly, and frustratingly, while the survival rates for most cancers have been improving, those for pancreatic cancer have not changed for the past 40 years.(2) In spite of this, pancreatic cancer is chronically underfunded, receiving only ~3% of the budget for UK cancer research.(10) On top of this, Cancer Patient Experience Surveys in England and Wales discovered that the experience of patients with pancreatic cancer is less satisfactory than for other cancers. For example, fewer patients with pancreatic cancer are provided with clear written information about the disease – which is, surely, the absolute minimum you’d expect for any patient – and they experience delays between diagnosis and treatment.(2) That is, if they receive treatment at all. While 20% of patients may be eligible for surgery, less than 10% are offered it.(2,11) In England, 7 in 10 patients will die without ever receiving any active treatment.(3) The COVID-19 pandemic has only exacerbated these issues and, indeed, has impacted every stage of the patient journey, from referral to treatment. Endoscopy – the technique often used to diagnose pancreatic cancer – has been worst affected of all diagnostics. At the height of the pandemic, the number of endoscopies fell by around 90%, and the average wait time has increased from 3 to 7 weeks. Surgeries for these patients, too, all but ceased.(12) Any of this could easily mean the difference between life and death.
This chasmic care gap explains why the charity Pancreatic Cancer Action infamously highlighted the poor survival rates of this disease with their controversial slogan: I wish I had breast cancer.(13) People with pancreatic cancer are given a losing hand from the very beginning and our current systems offer no reprieve.
If you take anything from this article, let it be a familiarity with the symptoms of pancreatic cancer – please go back and commit them to memory. One day, you might be able to gift someone a winning hand against all odds.