‘Getting stroppy with the receptionist is just not going to help.’ The distinguished oncologist Karol Sikora talks to John Sutherland about useful strategies for cancer
Professor Karol Sikora is among Britain’s most eminent oncologists, with a long history of front-line engagement with a disease that will, over the course of our lifetimes, afflict one in three of us. He has headed research teams and hospital departments in Britain and elsewhere, and for two years led the World Health Organisation’s cancer programme. He has also written twenty books, the latest of which is The Street-wise Patient’s Guide to Surviving Cancer, published in June. Here he talks to John Sutherland, emeritus professor of English Literature at University College London, about the practical steps patients can take to make a difficult experience more bearable.
Sutherland: Congratulations on an informative, comprehensible and witty manual. The topic is of obvious interest to people like me who have an unwelcome personal acquaintance with all those technical terms ending in ‘oma’ – sarcoma, lymphoma, carcinoma, etc. Your book opens with two instructions. The first is ‘control your treatment’. The second is ‘come to terms with the fact that the NHS is, as its name proclaims, serving the nation’s health, not yours particularly’. Could you enlarge on this advice?
Sikora: We all love the concept of the NHS and often treat it as a religion. Unfortunately, it has no incentive to move into the far more consumerist world that we are used to everywhere else. Buying a budget air ticket, getting internet shopping or even getting a pair of new glasses is a lot easier than getting a GP appointment or advice about a worrying symptom. I’ve called it the last bastion of communism in the Western world. The paradox is that it can provide the best care in the world for the majority of its customers, often with fantastic personal care, but not always. The main message of the book is that by taking control of your own destiny you can ensure you get the best out of the system and not lost in its many blind alleys, which is easily done in a world of targets, rationing, delays and under-capacity. Become an informed consumer and not a service user.
Sutherland: How handicapped in getting the best treatment is the ‘oldie’? Is there a covert triage at work? After all, the successful treatment of a baby with a hole in its heart is giving someone another seventy years of life. On the other hand, ‘Uncle Tom Cobley’s had a good run, let’s offer the old chap palliative treatment’. If that’s the unstated calculation (and of course it is maybe), how does the older person with cancer confront it? And overcome it? Or must he simply take it as it comes? Kismet.
Sikora: Rationing abounds, but political correctness insists the NHS is not ageist. Doctors now have to do mandatory training every year – I was proud to score 100 per cent in my equity and diversity course. I’ve framed my certificate and put it in our guest room toilet. It’s all madness of course – doctors have always looked after all patients whatever their age, colour, creed or sexual persuasion. The problem is that the cost of many cancer drugs is astronomical. Would you really want us to spend £100,000 on a new cancer drug for a 95-year-old with severe dementia for two months of increased survival in a care home? If you do, then what services do you want to cut? That’s the dilemma society just can’t face. With motor insurance we price older people out of the system – should we do the same for healthcare? If I’m a political party with that policy, you’re not going to vote for me.
My advice is to convince your doctors that you enjoy your life and want to continue, and perhaps more importantly that you are willing to accept the inevitably increased risks of certain treatments as you get older. After all, you are only as old as you feel.
Sutherland: You tell us that you used to think it was a ‘war’ against cancer – one that I remember Richard Nixon declaring 40 years ago. Now you see it as a ‘cancer industry’. Can you explain? Has the ‘war’ been won?
Sikora: The military metaphors remain – magic bullets, targeted therapy, collateral damage. But the emphasis is now on control rather than the destruction of cancer cells. After all, if we can control a 72-year-old’s cancer for a decade they will reach their expected lifespan of 81 years. That’s the way the war is going – a negotiated settlement.
Sutherland: I am 77 years old. Six years ago I had a radical prostatectomy. PSA, last time it was checked, was undetectable. If there is a recurrence – it happens – would my medical practitioners think me ‘worth’ a drug such as Provenge, which you tell us costs £98,000 for three months’ treatment? And works, apparently.
Sikora: Let’s hope your PSA stays down. Provenge was never licensed in any European country and its US manufacturer has gone bust. It was hyped out of all proportion and gave only a few weeks survival benefit at great cost. But there are about five similarly priced new drugs available. That could mean that the treatment of a prostate cancer that has spread could reach £500,000 by 2020. That would bankrupt all healthcare systems, not just the NHS. We have to find better ways to ensure we all benefit from medical innovation.
Sutherland: You make the point that most cancers are survivable. There are, you say, 200 varieties. Which are the pussycats and which are the bastards? And which respond least well to delays in the system, once diagnosed?
Sikora: As long as a cancer remains localised to its site of origin it can be cured by surgery or radiotherapy. The problem is cancer cells spread by the lymphatic system and the blood stream. Chemotherapy doesn’t care where the cancer is located and is unfortunately only partially effective for most common cancers – lung, breast, prostate and colon. That’s our big problem. So detecting cancer before it spreads has to be our main priority to improving outcomes. This means earlier diagnosis and speedy treatment pathways.
Sutherland: You stress good manners as a policy in the patient’s search for the best treatments and the best medicine. Good manners – and flowers for the receptionist. Can you enlarge?
Sikora: The NHS is a people business. Most of its staff are dedicated and remarkably caring. And they naturally respond well to pleasant patients. I’ve sat in our waiting room and observed wonderful interactions. But things go wrong, delays occur even in the best places. Getting stroppy with the receptionist is just not going to help. I’ve seen people shouting and swearing. Remember, just because you have cancer doesn’t mean that life’s other tribulations will end. You won’t find a car park slot, you’ll still get speeding fines, your children may still be unreasonable. But if someone is particularly helpful be appreciative – everybody likes positive feedback. Telling someone they have a lovely smile costs nothing. The lower down the food chain you are the less you get thanks in the NHS – that’s where the unsung heroes are to be found.
Sutherland: If the worst comes to the worst, what can the medical profession do for someone whose days are numbered? And what can one do for oneself? I was struck by the gallant way Oliver Sacks confronted his death sentence: multiple metastases of the liver, a recurrence from nine years before of a melanoma of the eye. As Sacks wrote in the New York Times, ‘It is up to me now to choose how to live out the months that remain to me. I have to live in the richest, deepest, most productive way I can.’ What advice would you give a patient in Sacks’s terminal condition? You must have had to do it often enough over your long and distinguished career.
Sikora: Everybody faces this situation very differently. The prediction of when death will exactly occur is notoriously difficult. So my advice is: do what you want to do, make peace with relatives you have fallen out with, travel while you can to see places you’ve always wanted to see, and above all don’t get absorbed by detailed monitoring of your disease’s progress.
I’ve had several patients who have willed themselves to stay alive for a specific event – to survive their wife, to get to their daughter’s wedding or to see their first-born. Not all made it, but it has taught me how complex the human body really is. While we can reduce the body to molecules with modern science, we will never fully understand either the mind or the spirit.
‘The Street-Wise Patient’s Guide to Surviving Cancer’ by Karol Sikora is published by Edward Everett Root, £9.95.