Thursday, 13 March 2014

Talking about cancer.

I have lovely friends and relations. I knew that already, but it's been brought home to me in lots of ways lately.

Early on in the process of discovering I have cancer, finding out what kind (breast), what stage (2) and what can be done about it (lots), I decided I was going to be upfront about telling people what it was. This is partly because there is still fear and stigma about cancer, and the fear certainly can work to prevent people getting diagnosis and treatment in a timely fashion.

I'm not surprised there is fear about cancer. It is a common cause of death, it is not always treatable, the treatment can be horribly debilitating and scary even when successful, and death from cancer can painful and wearying in a way that many other illnesses are not. I lost both my parents to causes which, while terrible - heart attack, stroke - were enviably quick (enviable for the person dying, that is, though shocking and traumatising for the bereaved). On the other hand, in the last couple of years I have seen good friends fight long losing battles against cancer which were incredibly wearing and painful to themselves and to their loved ones, as well as being bound to end one way only, as the cancers had reached stage 4 before they were even diagnosed.

So fear is pretty natural, and I have it myself. Stigma I don't understand at all, but that's another thing.

Anyway, I have cancer, but it doesn't have me, and I'm lucky. There is a lot that can be done for it, there is a tremendous amount of ingenuity, skill and support which goes into helping people with it, and the doctors are using the word 'curable' to me at every turn. Also I live in the UK and the NHS is underfunded and overburdened and under paid, but it's still world class and paid for from taxation rather than at the point of need. So why not tell everyone? After all, I'm going to have to explain to people why I've suddenly, for the first time since 1985, changed my hairstyle, why I might not be available for some of the things I do, why I might need to arrange cover for the classes I teach.

Telling folk does mean the people I tell are going to react to the information in their own ways. Everyone has their own take on it and that's fine.  Some express fear for me - which is OK: it is scary -  and some express bafflement (one dear person said "I don't know how to react to this" - to which the reply has to be "That's OK. I don't know how to react either") but all express concern and love. Someone sent jonquils, bless them, which make the whole house smell fantastic.

My friends and my family are great!

And... then there are also the odd responses.

A friend messages me with a link to a natural "cure for cancer": mistletoe. They ask me whether I've considered this as a treatment.

I reply with thanks, but at the moment (what with the doctors saying how it's curable and all) I'm going with the treatments the specialists tell me can cure my cancer, which is after all an extremely common and very thoroughly researched one. Friend replies saying "no doubt you have researched it and drawn your own conclusions."

Well, actually, do you know, I haven't researched it, very much.

Indeed, in the initial stages of my diagnosis (when I knew that I had breast cancer, but before I had seen the specialist to know whether it was operable or treatable or what kind of prognosis I might have) I was proud of not googling anything, because I knew that: -

a) what I found might not help me, and certainly wouldn't help me as much as the specialists would
b) what I found might quite likely be the worst case scenarios, which my imagination would no doubt fasten on
and mainly...
c) there would be a hell of a lot of dodgy and unsubstantiated claims popping up, from the silly-but-mild claims that something which kills cancer cells in a test tube will also kill them in your actual living body, to the frankly mad, bad and dangerous. Many of them - and mistletoe certainly falls into this category - are basically advertising by people who would like to sell you something.

"Research" is a curious word under the circumstances. Googling something may be the start of research (finding out what others have written, though only if it's online) but what comes up on the University of Google is ungraded for nonsense, charlatanry and source validity.

Research in the medical sense is rather more difficult. I don't have medical training, and I'm not, at 53, going to retrain as a scientific researcher all of a sudden, even now that I have a serious interest in an ailment and a first-hand experience of it that many researchers won't have. Also, we have a scientific profession (largely trained and funded at public expense), universities, hospitals and doctors by the hundreds all beavering away precisely so that when we are ill we do not have to chuck everything and become our own medical specialists.

While I generally agree with the idea that we take responsibility for things like keeping healthy (by for example not smoking, not drinking to excess, and trying to keep the weight down and to get out and about every day), I'm not about to reinvent medicine or come up with my own cures any time soon. I wouldn't be much good at it. I have other skills.

But among those skills are these. I can read, I can understand some serious scientific articles, and I have learnt from various sources (Ben Goldacre's wonderful Bad Science blog and books stand out) to have a certain degree of caution in interpreting evidence. I also have (and teach) approaches to assessing the reliability of sources, and a little bit about research project design validity.

It doesn't mean something from a respected source can't be flawed - the Lancet published the totally discredited and fraudulent article that started the MMR panic, for example, though they publicly withdrew it later - but at least the requirements of reputation encourage good sources to take validity seriously.

So, just for kicks, in the spirit of "research" (for a given value of research) I googled "mistletoe treatment for cancer". Millions of hits. The first one that comes from a reputable source is the BMJ - oh goody! Even better, it's a meta-analysis: a study of all the studies done that have been published. And it's by Edzard Ernst, a highly respected and very interesting man, who having been trained in homeopathy as well as conventional medicine has done more than most to test and to point out the nonsense that many 'alternative' treatments claim.

It's here:

Short summary - lots of proprietary mistletoe treatments available commercially in Europe and hundreds of thousands of websites promoting them. It's big business, worth millions of pounds, and in some countries insurance will pay for it.

And it doesn't work. The study is a meta-analysis, looking at the results and the set-up of all the different research that has been published. It rates them on findings (negative effect, no effect, positive effect), strength of result, and also on the experimental design. Bad design includes things like not double blinding, or poorly defined outcomes, or very small sample sizes which increases the chances that any changes are just random.

Here's what Ernst found about mistletoe as a cure for cancer: Where the research was badly designed, it got better results. When the research was better designed they got slight, no or negative results. This is to be read in conjunction with the fact that it is anyway harder to publish research which has slight or no or negative results: a lot of studies are started and just disappear from view, essentially because negative results make dull reading, and for worse reasons, like companies that sponsor the research deciding to only publish studies that make their products look good. (Amazingly, there is no central register that tracks what research is being done so people can catch companies dropping studies which disappoint them).  So the chances are that there have been more studies which the meta-analysis did not find because the results were too disappointing to publish.

And it isn't safe. Mistletoe treatments have resulted in a large number of serious adverse reactions, including ulceration and kidney failure. In the lab, mistletoe actually enhances the growth of some cancer cells (at least turmeric seems to kill them in the test tube, if not in real bodies! Besides which, turmeric is delicious in curries).

So, 20 seconds' "research" (googling) and 5 minutes reading the results gives me a strong sense that mistletoe, in spite of the hundreds of thousands of websites promoting it, will not be any use for what ails me, and might well be bad. I have cancer already: why would I want to risk kidney failure on something that does not work? (Not that there aren't adverse effects for the treatment I'll be getting. Unlike the commercial websites, though, the doctors have been entirely upfront about these, almost to the point of putting me off, and are doing tests to understand how far I'm likely to be susceptible to some of them so the effects can be mitigated).

I sent my friend the link to the BMJ, with thanks.

Oh, but I do so understand where this friend (like me a storyteller) is coming from!

It would be wonderful to imagine I could go into nature, out into the woods, to discover for myself the secret oak grove, where the healer (with a golden sickle, perhaps?) dispenses mysterious and magical mistletoe that will cure me. In imagination the white berries glow in the darkness of the sacred grove like little full moons. The healer will pluck one berry and give it to me, a little kiss of health from the wild wood.

It becomes a pilgrimage, a ritual journey that is a far cry from getting the 11 bus to the hospital (which is how I get to my healers), and also a long, long way from the actually existing version of "mistletoe as a cure for cancer", which would be a case of me sitting at home at the computer buying some expensive pills off the internet.

Even better, with "research" I could kid myself that I had become that healer.

It would be lovely if it were true. It would be just like a story.

It isn't.

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