Image: Professor Paul Cosford speaking at NCRI Cancer Conference 2019. Credit: Simon Callaghan Photography.
Your phone buzzes with a notification to tell you your holiday is just one week away – check in is now available online.
It dawns on you that you haven’t sorted the travel insurance yet, so you phone up your old provider and run through the questions to get a quote.
“Do you have a terminal illness?” the representative asks.
“Well, it depends. What do you mean by terminal?”
This is the experience of an increasing number of patients, as they are living with cancers which are “treatable, but not curable.”
Advances in healthcare mean that people are living longer lives, and alongside this increased lifespan comes an increased risk of cancer. The more times your cells divide, the more opportunities there are for DNA errors to arise, leading to the development of disease.
Cutting edge treatments – such as the targeted drug treatments being discovered and developed at The Institute of Cancer Research, London – are leading to a greater number of patients living for a long period of time undergoing non-curative treatment.
The National Cancer Research Institute (NCRI) Cancer Conference is the UK's largest meeting of cancer researchers and doctors. In 2019, the conference is being held in Glasgow from 3-5 November and, as always, the ICR is attending.
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Professor Paul Cosford, Medical Director of Public Health England, spoke at the 2019 NCRI Cancer Conference about his diagnosis of lung cancer which falls into this category.
Professor Cosford is a keen cyclist and trained to undertake a hugely challenging 600km cycle.
On this trip, he got to the 500km mark and didn’t feel up to completing the cycle, which alarmed him, and was coughing up blood.
He called his wife – a fellow medical doctor – and upon returning home she examined him with a stethoscope. She could hear no breathing sounds from his left lung.
A trip to the GP and hospital soon followed, and a swift move through a series of scans and consultants (who better to know how to navigate the system).
A chest x-ray showed a large pleural effusion – fluid on the lungs – and then came the diagnosis – lung cancer with pleural spread and metastasis to the liver.
“You go through the stages of grief in reverse,” he said, making reference to the book When Breath Becomes Air by Paul Kalanithi, a neurosurgeon who was diagnosed with metastatic lung cancer, and died before he got the chance to practise as a fully qualified surgeon.
Professor Cosford shared a poem he wrote about his regular scans, and his outlook on life with this chronic cancer – “being well is a constant surprise,” was a stand-out line.
He heads for a scan every three months, and at the scan, he’s given an update on his prognosis. So far, each of these appointments have ended with another 3 months of hope, and he says it’s hard to plan beyond this time frame given his circumstances.
If you can’t count it, it doesn’t count
Jane Maher from Macmillan Cancer Support highlighted the importance of identifying the patients who fall into this treatable but not curable category, as it has already been established that these patients have different needs than those patients with cancer that has either a cure or those who have a firm terminal diagnosis.
These patients have a greater need for support from services like Macmillan, and as Jane put it, “If you can’t count it, it doesn’t count”.
Attempting to quantify patients in this category proved hugely challenging, as the data simply fails to account for this “new” cross section of patients in a lot of cases.
Based on careful analysis, Macmillan estimate the number to be around 136,000 at the conservative end, but depending on who you include in the “bucket”, this number could be as high as 250,000 in England alone.
This means that there are roughly the same number of patients with treatable but incurable cancer as there are multiple sclerosis and Crohn's disease patients together.
An often overlooked aspect of cancer care is the mental health of patients – not only those who are currently sick, but also those who have completed a successful course of treatment for a cancer which has a high likelihood of recurrence.
Many patients develop significant fear of their cancer recurring, and Professor Phyllis Butow from the University of Sydney delved into the severity of this problem and a new method she has developed to tackle it, called “ConquerFear”.
New treatments prolong the time a patient stays alive, but these treatments bring with them a huge degree of uncertainty, as Professor Cosford mentioned about his lung cancer.
Professor Butow likened this new standard of care to having the Sword of Damocles hanging over you – you may feel perfectly well but the uncertainty of the future and the panic of cancer recurring can have a significant impact on a patient’s daily life.
This presents an existential crisis for many patients, and they can often begin to interpret ordinary fatigue or injury as a sign of something much more serious, believing their cancer has returned.
This affects patients, their families, and everyone else in their social circles, and should be an area of focus for further research and interventions.
The ConquerFear intervention showed significant results for patients in a randomised trial against a control treatment, and Professor Butow is hopeful that work continues in this area as the treatable but not curable patient population grows.
Changing the narrative
Professor Cosford spoke about the “public narrative” regarding a patient’s cancer journey, particularly those with a terminal diagnosis.
“You get diagnosed, you fight valiantly, and you eventually succumb,” he said, highlighting that these discussions often only take place after the patient has died.
With the rise in patients in the treatable but not curable category, perhaps it’s time to change the narrative, to ensure that we are providing the best support possible to those affected, and adjusting our definitions and treatments to fit the new mould.
But what does this new category of patients mean for The Institute of Cancer Research (ICR) and our research? Through our focus on cancer’s ability to evolve resistance to treatment, our scientists are working to find new treatments and approaches that could help us ensure people with advanced cancer can have their disease managed for the long-term.
Combatting chronic cancers
What if we could turn cancer into a truly chronic disease where the Sword of Damocles no longer feels like it’s hanging over you – our researchers hope to be able to devise ways to stay one step ahead of cancer so treatment can work for so long, it is effectively a cure.
As our Chief Executive, Professor Paul Workman, said when we announced plans for our new Centre for Cancer Drug Discovery: “We firmly believe that, with further research, we can find ways to make cancer a manageable disease in the long term and one that is more often curable, so patients can live longer and with a better quality of life.”
But there is still so much work to do and, until we arrive at a day where we can say people with advanced cancer can live well for a long time, it’s vital we devise strategies to support people like Professor Cosford and the growing numbers of patients who can be treated but not yet cured.
The Centre for Cancer Drug Discovery is a £75m project – and we now have less than £14m to raise. To make our building a reality, we urgently need your philanthropic support.
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