Tag Archives: cure

Bowie, battles and moonshots: why words matter

Marc Beishon

Marc Beishon

David Bowie died of cancer last week, aged 69, after what his family said was a ‘courageous 18 month battle with cancer’. The singer was celebrated for his many creative phases, such as the time of the famous Space Oddity, even as British astronaut Tim Peake was preparing for a real space walk on Friday.

The day after Bowie’s death was announced, President Barack Obama said in his State of the Union speech that he was backing a ‘moonshot’ against cancer, putting vice president Joe Biden in charge of ‘mission control’ (Biden had lost his oldest son, Beau, from a brain tumour, and had earlier announced his interest in leading renewed investment in cancer).

Obama drew a parallel with the rapid progress in putting men on the moon in the 1960s with the promise of modern day medical science, and said: “For the loved ones we’ve all lost, for the families that we can still save, let’s make America the country that cures cancer once and for all.”

It’s reminiscent of Richard Nixon’s ‘war on cancer’ in 1971, not long after Bowie launched his fictional Major Tom into space and Neil Armstrong did his moon walk. It’s good to see though that the war metaphor seems to have been superseded by an appeal to the might of science, although there are echoes of the Cold War space race here, and we’ve also seen more ‘moonshots’ against cancer and other diseases – it’s another overcooked metaphor along with ‘war’ (the top US cancer centre, MD Anderson, launched a moonshots programme in 2012, for example, but at least MD Anderson recognises that cancer is many ‘moons’).

There are serious points about the use of words. Individuals such as Bowie and, shortly after, British actor Alan Rickman, are still said to be engaged in personal ‘battles’, often in secret. The word battle appears in almost all headlines or news stories about people dying from cancer, and the war and ‘fighting’ theme shows no sign of abating.

It’s rare to see the word ‘battle’ used for people with other chronic and terminal conditions, such as dementia, heart disease and COPD (chronic obstructive pulmonary disease), even though there are many challenges for sufferers and carers. Cancer is also invariably seen as terminal regardless of the type and stage, and progress made in cures, so people are often characterised as ‘battling’ a condition that exhibits few symptoms, has fairly benign treatment and has a successful outcome.

Conversely, a battle against a cancer at a stage that is terminal is framed as something that could perhaps have been fought successfully. It’s why many advocates and patients, particularly those in the metastatic community, criticise the use of ‘war’ and ‘fighting’ terms, such as in a recent US government agency campaign aimed at younger women and breast cancer, Bring Your Brave. Some cancer charities also tend to focus on military metaphors in their fundraising.

Debate and research about the ‘violence’ metaphor in cancer has stepped up in the past few years. An article last year in JAMA notes that “the use of the battle metaphor implies a level of control that patients simply do not have”, and “the continuous urge to win the battle extends to oncologists, who actively treat patients for too long”. Some want a ban on military metaphors (along with other terms used in oncology such as ‘aggressive’ and ‘well-tolerated’).

Recent research includes a study that finds that “exposure to metaphoric language relating cancer to an enemy significantly lessens the extent to which people consider cancer-prevention behaviours”. War metaphors emphasise power and taking aggressive actions toward an enemy – but most cancer prevention behaviours such as quitting smoking involve limitation and restraint.

But other research is more nuanced. A study in the UK looking at the use of the metaphors ‘violence’ and ‘journey’ (the more neutral term put forward as an alternative) by patients and health professionals finds that “violence metaphors are not by default negative and journey metaphors are not by default a positive means of conceptualising cancer” as there are positive and negative aspects of both in terms of empowering or disempowering people.

There are a lot of issues at stake, then, in how the war theme is used, from futile treatments at the end of life, to the wellbeing of those with metastatic disease, and strategies to help patients cope with treatments (young people may respond better to a ‘fight’. Further, there are the wider contexts of fundraising, research directions and the perception of cancer in society (as we recently noted, many people think metastatic breast cancer is curable).

As for the latest moonshot, there’s a well-worn cliché about something not being as complicated as ‘rocket science’. In fact, rocket science is not especially difficult but cancer science is clearly extremely challenging. There’s a danger perhaps of overemphasising ‘big science’ and all the ‘omics’ and not investing in prevention and delivering a high standard of current care (many in the US and elsewhere don’t get optimal treatment, and a moonshot against tobacco could save many lives globally).

Finally, philosophical words from David Bowie: “Planet Earth is blue. And there’s nothing I can do.” Except by all accounts his remaining time after diagnosis was tremendously productive and may become an exemplar in focusing not on the ‘battle’ but living life to the full with cancer, as with any other disease.

And an addition – read this article by Piers Sellers, an ex-astronaut and current climate scientist, on how he intends to spend his remaining time having been diagnosed with stage 4 pancreatic cancer (answer: he’ll be back at work).

I will survive… Are you positive about that?

Peter McIntyre

Peter McIntyre

Is a positive attitude about survival useful or appropriate when someone is diagnosed with cancer? Is optimism always an asset as an approach to life, or indeed death?

We all love positive energy and celebrate someone who triumphs against the odds, but for many that is not possible. Cancer can be relentless and pitiless; half of those diagnosed with this disease die from it, irrespective of their determination to fight.

A daunting number of friends and relatives have recently died from cancer; more or less within a year of diagnosis. Their own and family reactions will be familiar to you who work in the field. They staggered under the news. Then hopes rose as they learnt about possible treatments. During a period of maximum engagement, they did their best as patient or supporter to reach the distant shore of survival.

In my unscientific sample however, the undertow proved too strong.

As treatments failed, the patient became exhausted; options narrowed, hope became fragmented. The narrative switched to unlikely new treatments, and eventually a need for some breathing space and a bit more time. The final stages were rapid.

Where do you find resilience?

I am wondering what those of you who apply your skills and knowledge to saving life tell yourselves about those you cannot save. Where do you find resilience you need for the next patient?

It is evident that a positive approach to cancer is not always about winning a battle. Sometimes a cure is simply out of reach. In such cases, treatment and care to achieve the best possible quality of life, delivered with compassion, cannot be ‘failure’.

Certainly, the people I know found real positives in loving human interaction after curative treatment ended.

A cousin who put a premium on his independence experienced a remarkable strengthening of his marriage and family life in his final year.

A relative who died leaving a son under the age of two spent her final days surrounded by love. She and her husband made plans for their son after her death; her father read to her; her brother crossed the world to be with her.

A man in the final days of life asked for a latte and Danish pastry to be brought to his bedside. He and his sister responded with almost ridiculous pleasure to this familiar treat he could neither eat nor drink.

As a journalist, I am aware of my own ignorance. But even the most skilled and knowledgeable lack the power of life and death or the gift of prophecy. Neither cutting edge treatment nor a positive approach guarantees survival.

At a certain stage, a determination by the patient to make the most of remaining life and by professionals and family to deliver treatment and care with compassion offers a route to the happiest possible ending. Better to help the patient to be ready for anything, than to stake all on what may prove to be a false positive.

Davos: another milestone in global efforts to control cancer

anna portrait  picWorld leaders from governments, industry and civic society will gather in Davos next week to discuss how to respond to some of the most pressing issues facing the world today.

It is the annual meeting of the World Economic Forum, and this year the question of how to stem the rising tide of suffering and death from cancer will be on the agenda for the first time.

Two sessions are scheduled.

The first is an interactive dinner session on the Friday evening (Jan 23rd), titled: Cancer, Pathway to a Cure – What are the breakthroughs in cancer prevention and therapy?

This session offers an opportunity to ask questions about whether the research, development and regulatory “ecosystem” that we are relying on to deliver a cure for cancer is really fit for purpose. Where is the current succession of therapies – many using similar approaches to deliver incremental benefit at ever higher costs – really taking us? How can we reconfigure the business model to promote more innovative, ambitious approaches that can overcome the problem of drug resistance?

The second is a working session on the Saturday morning (Jan 24th), titled: Globalisation of Non-Communicable Diseases.

With governments across the world already committed to reducing preventable deaths from non-communicable diseases including cancer by 25% by 2025 (65th World Health Assembly, 2012), this session offers a welcome opportunity to put on the table the bold actions that must be taken at national and international level if governments are to have any chance of delivering on the commitments they made.

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Doubtless there will be many Davos participants who will bring their own agendas to the cancer sessions. Among them will be Franco Cavalli, chair of the World Oncology Forum – a gathering of leading cancer researchers, clinicians, and policy makers, convened by ESO in 2012 and 2014, in collaboration with The Lancet, that has already spelt out the bold actions that are urgently needed at national and international level to turn the tide on cancer.

These actions are defined in the Stop Cancer Now! appeal and two more detailed appeals, which fit neatly in with the two Davos sessions, on “Speed up progress towards a cure”, and “Treat the treatable”. Cavalli, who played a major role in getting cancer onto the Davos agenda, will be arguing strongly for these policies at the two cancer sessions.

Davos is traditionally important as a forum where constructive conversations can take place between specialists – eg from the world of cancer – who have a deep understanding of a particular problem, and people who have the power and responsibility to take the action required to find solutions.

This year, it is an opportunity to get the message across to world leaders that “business as usual” is not an option in the face of a cancer epidemic that is costing the world $2 trillion each year, and to begin to turn the policies that the cancer community has been calling for into actionable items on the agendas that matter.

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War Against Cancer: the audited accounts

 


The truth in samll doses
Efforts to cure cancer are being hobbled by a culture that obliges researchers to think small and cautious while systematically overstating how much is being achieved.

Journalist and lymphoma survivor Clifton Leaf argues this case in his book The Truth in Small Doses: Why We’re Losing the War on Cancer and How to Win It.

His book is the culmination of almost 10 years of research, which generated a number of articles in Fortune, the New York Times and other publications along the way.

It is a call for a change in the cancer research culture, written by someone who knows what it is like to have their life hang in the balance, who believes in medical research, and who has devoted many years to trying to understand why progress is so slow and how we can do better.

In recognition of his achievement in opening up a lively and informed discussion within and beyond the cancer research community,  ESO awarded Leaf the first ever Best Cancer Reporter Lifetime Achievement Award, commending in particular his meticulous research and his ability to make sense of his material and tell the story in a way that is both compelling and constructive.

Resonance
The Truth in Small Doses is a joy to read, with a wealth of anecdotes that on their own justify the cover price. Like the one about the one-eyed surgeon, Denis Burkitt, who – in a goal-oriented collaboration with pathologists, virologists and an entomologist – solved the riddle of the aggressive tumours of the jaw that were killing so many children at his mission hospital in Kampala, with support from a £250 research grant, a 1953 Ford Jubilee station wagon, and a neighbouring hospital director who had a way with cars.

But Leaf also describes a world that cancer researchers are all too familiar with: endless applications for research grants; keen young scientists, full of ideas, obliged to focus on ‘safe’ well-explored topics, with enough a priori evidence to convince grant panels there is a good chance of a positive outcome.

Some points in the book are certainly open to challenge. When it comes to playing it safe, it could be argued that industry is more of a problem than academia. And while there are good reasons to argue, as Leaf does, for more research to be directed at tackling the disease at its earliest or precancerous stages, there are other innovative approaches with an equally strong scientific rationale that suffer the same neglect.

His core message, however, clearly resonates with a widespread sense of frustration within the cancer research community. Leaf speaks the truth, which explains why this book has been widely welcomed.

Going over the accounts
A financial journalist by background, Leaf makes good use of numbers to illustrate his points.

Numbers like these:

691 – the number of times “cancer breakthrough” was mentioned in the media between January 1990 and November 2003
71 – the number of new cancer drug approvals over the same period
45 – the number of approvals for new drugs (rather than new uses for existing drugs)
12 – the number of those new drugs that could show they actually helped keep people alive

Or these:

65,000 – the number of papers published by 2013 on p53
24,000 – the number of papers published by 2013 on c-Myc
$100,000 – estimated cost per study
0 – the number of cancer therapies based on these targets

Or on the process of applying for an R01 grant, the bedrock of medical research funding in the US:

260 – the number of pages in the Application Guide
23 – the number of steps in the application procedure
1 year – the average duration of an application process
1 in 10 – the chance of success

Or these, on the chances of becoming a principal investigator before your 36th birthday:

1 in 20 – the figure for 2013
1 in 4 – the same figure back in 1980

What the figures reveal, argues Leaf, is a culture centred on generating data that can be published rather than generating knowledge that could lead to a cure.

Everyone who wants to see faster progress in curing cancer, and young scientists who don’t want to waste their most creative years, have an interest in reading this book.

Clifton Leaf is deputy managing editor at Fortune. He will be formally presented with the Best Cancer Reporter Lifetime Achievement Award by Franco Cavalli, chair of ESO’s scientific committee, at the International Conference on Malignant Lymphoma in Lugano, June 2015.