You have nothing to fear but fear itself (and breast cancer)

So far this week, we’ve had several examples of how not to write about abortion, so now we might as well top the week off with an object lesson in how not to write about breast cancer courtesy of Melanie McFadyean.

For anyone diagnosed with cancer, anything but uplifting good news is frightening. And this week’s news is that breast cancer is set to increase exponentially, leaving health services unable to cope. Where does that leave any of us except more frightened?

Speak for yourself, Melanie – where this leave me is with a burning to desire to set the actual research paper you’re referring to in to order to see whether it genuinely lives up to the hype, and it’s just as well that some of us have that attitude as McFadyean chooses to continue her article at breakneck speed and in full alarmist mode.

Two things come to mind. The first is that, if a disease is on the increase, so should programmes to treat it be on the increase. The solution is a thought I return to time and again. What is our money spent on? It’s tempting to turn to figures for Trident, for defence costs squandered in wars started on the basis of lies, for PFI projects that line the pockets of shareholders and executives and leave the taxpayer to pick up the bill over a period of something like 30 years. Add to the list at your leisure, it is very long. And I think not only of people diagnosed with breast cancer, or any cancer, but of the amazing nurses, the lab technicians, the overworked junior doctors, the hospital cleaners, the GPs, the people who hold our lives in their hands, many of them grotesquely underpaid and overworked, doing their best against an ever-more straitened NHS, to promote health and save lives.

The second is that this news might make it much worse for anyone recently diagnosed and finding herself in the waiting rooms in cancer clinics and surgeries, fearing that there won’t be enough time for anyone to talk to them, to work out the complexities, to steer them through the choices they might have to make, let alone the fear that funds won’t cover the best treatment. Lots of us go to the internet, scanning every website for advice, for help, for reading lists. We hope to find ways to preserve our health and our life. It’s a minefield. Bad news like this has something of the dog racing into the flock of birds, sending them whirling in a panic from the danger among them. How to save oneself?

Jeebus – take a breath Melanie, we haven’t even got to ‘if the research is kosher’ bit yet and already you’re breathlessly demanding the keys to the Exchequer as if the shit’s going to hit the fan next week.

Let’s deal instead with the facts.

The actual paper at the heart of Melanie’s panic attach is called ‘Projections of cancer prevalence in the United Kingdom, 2010–2040’ and it was published in volume 107 of the British Journal of Cancer, with a publication date of 25 September 2012, so its been kicking around in print for about three weeks without causing mass panic and hysteria before it came to Melanie’s attention.

Sadly, the full paper is behind a paywall, so I can’t give you full skinny, but the abstract is clear enough for me to work with here and provides the following key information:

Methods:

National cancer registry data for England were used to estimate cancer prevalence in the United Kingdom in 2009. Using a model of prevalence as a function of incidence, survival and population demographics, projections were made to 2040. Different scenarios of future incidence and survival, and their effects on cancer prevalence, were also considered. Colorectal, lung, prostate, female breast and all cancers combined (excluding non-melanoma skin cancer) were analysed separately.

Results:

Assuming that existing trends in incidence and survival continue, the number of cancer survivors in the United Kingdom is projected to increase by approximately one million per decade from 2010 to 2040. Particularly large increases are anticipated in the oldest age groups, and in the number of long-term survivors. By 2040, almost a quarter of people aged at least 65 will be cancer survivors.

Conclusion:

Increasing cancer survival and the growing/ageing population of the United Kingdom mean that the population of survivors is likely to grow substantially in the coming decades, as are the related demands upon the health service. Plans must, therefore, be laid to ensure that the varied needs of cancer survivors can be met in the future.

So, the researchers have taken data from the National Cancer Registry, run it through some statistical models which take into account current trends in cancer incidence, survival rates and general population demographics and got some numbers of the other side which suggest that there will will a fair few more cancer survivors in the general population in 28 years time then there are now. They then, helpfully suggest that this is something that the NHS and central government might want to consider planning for as it may prove to be a bit expensive.

There are four obvious things to say about this paper.

First, its projecting ahead something like 30 year based on existing trends so, in terms of accuracy, its findings could quite easily anywhere from ‘pretty much on the money’ to ‘where’s the flaying and monkey butler you promised me’.

Second, the abstract mentions ‘different scenarios’ which one would assume will include best case, worst case and a few in between, creating ample scope for cherry-picking and statistics abuse if and when the paper starts getting regurgitated in press releases.

Third, there is no mention whatsoever of the researchers including any financial or economic models, so while the figures might suggest that the health needs of all these extra cancer survivors we might have in 2040 could turn out to be a bit pricey, the study has nothing whatsoever to say when it comes to question of affordability. If the British economy lollops along in the doldrums for the next thirty years then we could well be up shit creek without a paddle but if thing improve significantly over that time then there may be nothing too much to worry about.

Finally, none of this is the least bit surprising. Even without looking at the full paper I can tell you that what it predicts is that the overall prevalence of cancer and the number of cancer survivors in the general population will increase over the next thirty years because:

a) the population of the UK will increase anyway, so even if the prevalence of cancer stayed the same, there would still be more people developing cancer just because there are more people.

b) the UK has an ageing population and as age is significant independent risk factor in many common cancers, not least breast cancer, more older people in the population will mean more people developing cancer, and

c) the relative proportions of different types of cancer will change over time, with some cancers becoming more common and others less common.

Mesothelioma, a particular nasty form of lung cancer which is caused primarily by exposure to asbestos, will largely disappear in the UK over the next thirty years thank to the health and safety laws introduced back in the 1970’s which mean that very few people are, today, exposed to asbestos in their home or their working environment. Lung cancers, generally, will probably fall in line with downward trends in cigarette smoking but, as I’ve already mentioned, the prevalence of breast cancer, and prostate cancer, will rise because age is significant risk factor for both cancers and there will be many more older people in the population, assuming that half the population of the UK isn’t wiped out in the meantime by Silesian Monkey Butler Flu or Pernicious Cowellitis.

So, if this papers has been kicking around for the last three weeks, why has Melanie suddenly developed an attack of the vapours?

The clue lies in this rather sketchy news report.

The number of older women with breast cancer will almost quadruple by 2040, according to new research in the British Journal of Cancer.

Currently 340,000 of the 570,000 women of all ages in the UK with the disease are 65 or older. That is set to increase to 1.2 million out of a projected 1.68 million total number of women with the disease by 2040.

That represents a rise in the proportion of all breast cancers among older women from 59% now to 73% then. The rate of increase among younger women will be much less steep: cases among those aged 44 or under are expected to almost double, and those among 45- to 64-year-olds will exactly double.

Now I know exactly what you’re thinking – press release – and you are, of course, absolutely right.

Ciarán Devane, Chief Executive, Macmillan Cancer Support, says:

“The NHS needs to take heed of these figures. It is already struggling to provide adequate care for older breast cancer patients. We need to change the way we care for older breast cancer patients now – so that we are prepared for such a dramatic increase in numbers.

“Older people must be provided with the right treatment at the right time at the correct level of intensity.

“We can never assume that because a woman is older that she will not cope with surgery or that she is less interested in body image than a younger woman. It is our duty to ensure that every cancer patient has access to the best possible care.

“We can no longer tolerate the present situation where too many cancer doctors are making assumptions based on age which often result in older women receiving inadequate care for their breast cancer.”

The research also showed that the projected increase in breast cancer among the over-65s is almost double the increase for younger age groups[1].

Macmillan is calling for all cancer services to ensure that treatment decisions are based on objective assessment of patients as opposed to age-based assumptions.

Macmillan, in partnership with Age UK and the Department of Health, has set up five pilots to test new models of older people’s care. They will report in December 2012.

Yep, right down to the carefully cherry-picked and out of context statistics – and what’s the betting that all the number come from the paper’s worst case scenario. Anyone care offer me some odds?

Oh, and that’s a delightful bit of doublethink there, the contrast that’s been drawn between ‘objective assessment of patients’ and ‘age-based assumptions’. If you can be bothered to dig around in the research, what you’ll very quickly find is that age is identified as an independent risk factor in all manner of things, so when doctors sit down to consider a patient likely prognosis and take their age into account what they’re doing (hopefully) is taking a view based on clinical evidence and best currently available, which is about as objective as it gets given the impossibility of predicting the future with 100% accuracy. Macmillan and Age UK might not like the idea that that could affect the treatment decisions that doctors make, but that doesn’t give them license to pretend that such decisions are made on anything other than an objective basis. The idea that we should throw the kitchen sink at people, in terms of the treatment, irrespective of what the clinical and research evidence has to say about whether such treatment is likely to be effective or just a waste of everyone’s time effort and money is the one that based on unevidenced assumptions.

But hang on a second, this is Macmillan we’re talking about here – aren’t they the good guys?

Well yes… and no.

There are two sides to most story and that’s no less true of Macmillan for all that is has a very carefully manicured public image. On one side, there’s the touchy-feely nursing and cancer support line stuff that the public see and that organisation is all to keen to promote and, on the other, there’s the side that you only get to see if end up having to deal with the organisation behind the scenes, the voracious fundraising and publicity machine that runs second only to the Borg in its efforts to assimilate everything it touches.

I’ve worked with people who’ve had to deal with the other side of Macmillan, people who were, shall we say, less than impressed with the organisation’s rather predatory attitude toward smaller organisation, with the funding agreements that require nursing staff to continue to be referred to as Macmillan nurses long after the funding for their post, from Macmillan, has dried up and, particularly, with the kind of pressure that smaller organisations can  come under to subsume both their identity and all their hard work in the all-powerful Macmillan brand, allowing Macmillan to take all the plaudits while they do all the actual work.

There is no denying that Macmillan is incredibly successful at what it does and, especially, at raking in cash from the general public, so I wouldn’t blame anyone for taking the view that the organisations ends fully justify its means but its also fair to say that not everyone’s view of the organisation is quite as rosy as its publicity likes to suggest and I know people and organisations that do really good, innovative, work with cancer patients and survivors who, sometimes after months of negotiations, have chosen to forego the money and walk away from Macmillan because they don’t much like the way the organisation operates when its safely away from the public gaze.

Make of that what you will, but what is perfectly clear here, when you compare the abstract that appears in the British Journal of Cancer with the contents of Macmillan’s press release is that a routine statistical paper that should largely be of interest only to academics and health economists, is being hyped by Macmillan in a manner that is wholly out of all proportion to any legitimate public concerns that need to be raised at this. Indeed, its far too early to say that this particular paper should be interest to policy makers as well, as without any economic models to go with the projections, there’s nothing much that policy makers can do with it beyond forward it to an economist or two with the suggestion that they fill in the financial gaps.

I don’t really need to explain to you what the likely outcome of this will be, you can already see it for yourself in McFadyean’s article:

…this news might make it much worse for anyone recently diagnosed and finding herself in the waiting rooms in cancer clinics and surgeries, fearing that there won’t be enough time for anyone to talk to them, to work out the complexities, to steer them through the choices they might have to make, let alone the fear that funds won’t cover the best treatment.

By the time that Macmillan’s press release has been uncritically regurgitated by already cancer-obsessed mid-market titles like the Daily Mail and Daily Express, it very likely will have precisely that effect. Some women will read Macmillan’s half digested press release in those newspapers and they will worry that this might mean that they won’t be able to get the treatment they need, especially when the UK economy is still halfway down the crapper and barely a day goes by without someone, somewhere, talking about austerity and even more cuts in public spending.

It’s fucking irresponsible – simple as.

Now that doesn’t, of course, that McFadyean’s getting a free pass for having realised that this ‘news’, as hyped by McMillan, might have a bit of an immediate downside, not when she also makes comments like this in the same article.

I spent money on complementary treatments that many others can’t afford.

Yeah sure, not being in a position to piss your money down the drain on quackery is such major problem when you’ve got breast cancer, isn’t it? Never mind the amazing nurses, the lab technicians, the overworked junior doctors, the hospital cleaners and the GPs, what about the fucking aromatherapists? Where the hell will they be if there’s going to be shitloads more women out there with breast cancer who can’t afford the price of a eucalyptus and jojoba rub?

The real concern here isn’t that some people won’t be able to afford so called ‘complementary treatments’ – and by the way, they’re not treatments because they don’t work and the only the ‘complement’ is the quack’s bank balance – what we should be worried about here is that cancer quacks will do what they always do. Take this ‘news’ and use to exploit people’s anxieties about cancer to sell them even more worthless bullshit. Indeed the other thing that this ‘news’ is likely to generate is a shitload of phone calls to publishers from established quacks who’d very much like to talk about an advance for the next ‘miracle cancer prevention diet’ book.

If there’s one thing missing here, it’s a sense of perspective. Just think for a second about what it actually says in the abstract of the study that’s triggered all this off:

Increasing cancer survival and the growing/ageing population of the United Kingdom mean that the population of survivors is likely to grow substantially in the coming decades.

Did you notice the magic word there? Survivors.

If the projections in the paper are anywhere close to are correct then there will be a lot more people around in 2040 who have had cancer, not just because there will be more around to develop cancer in the first place but also because the people who do develop cancer will be less likely die as result. It won’t stop them dying, full stop, but it will mean that they’ll die of something other than cancer – most likely coronary heart disease, if you look at the statistics.

That’s the truth about how these things work.

The single biggest reason why more women die, today, of breast cancer than used to be the case 100 years ago is because more women live long enough to develop breast cancer in the first place, a feat they manage manage by not dying in childbirth or of diseases like cholera, typhoid and tuberculosis. Do you not think that maybe that’s actually a bit of a positive – your odds of dying of cancer have gone up over the last century but then so have your odds of living long enough to see your kids grow up as well.

We live in society where you can’t even breathe the word ‘cancer’ without someone chugging you for more money for research into a cure but just think for a second what it would mean if someone did manage to crack breast cancer and come up with an actual cure.

Where, as a society, would we go from there?

After all, a cure from breast cancer isn’t going prevent anyone from dying, it’ll just mean that the people who would have died of breast cancer will die, eventually, of something else. What history tells us is simply that if you take breast cancer out of the mortality equation then it won’t be long before something else will pop up to take its place, because that’s exactly what happened with cholera, typhoid and all the other nasty stuff that our grandparents and great-grandparents had to deal with.

It’s also, I think, entirely fair to say that whatever does come along to take the place of cancer as public enemy number one will scare the bejeebus out of people living in our hypothetical cancer-free society at least as much as cancer scares people now. In fact, it’ll probably scare them even more than cancer because what we can also see very clearly from our own history is that the more remote the prospect of dying become, the more frightening people find both the prospect of death and its most heavily publicised causes.

Logically, then, although its possible that we might be able to free ourselves of the spectre of cancer, the one thing we’ll never be rid of is chuggers – as long as people die of something, there’ll always be people out there asking for more money to fund more research into preventing whatever it is people happen to be dying of, even if that ends with people doing fun runs to raise money for the search for the Philosopher’s Stone.

We may have gained considerably over the last century or so in terms of lifespan but I can’t quite shake the feeling that we’ve also lost something important as the same time, an appreciation of what it means to have lived well, no matter how long our allotted span turns out to have been.

McFadyean seems to think that this scare ‘comes down to resources, to planning and to a human approach to crisis’. It doesn’t. What it comes down to, most immediately, is an opportunistic press release from Macmillan and a press that has, yet again, fallen down on the job and failed check its reportage against primary research to see if what Macmillan has to say in its press release is actually a fair and accurate reflection of the contents of the paper.

Which it isn’t.

At a deeper level, however, what this wholly unnecessary scare comes down to is that we live in a society that is rapidly becoming so obsessed with death that, if we’re not very careful, will soon have forgotten what it means to be alive, and if that happens that I suspect that we’ll all be well and truly fucked.