Gideon Burrows has an inoperable brain cancer that is slow growing but is inevitably going to kill him. He has written a remarkable book about his experience, This Book Won’t Cure Your Cancer. A professional wordsmith, he is able to describe his experience of illness so vividly that the reader enters into his life, feels what he feels, and shares his suspense about what the next scan or doctor’s visit will reveal. Along with him, we suffer through the panic and fear, the chaos, the agonies of delays and uncertainty, the unpleasant hospital environment, and specialists with poor bedside manners. We follow him through difficult decisions about how to share the bad news with friends, relatives, and his young children; and we understand why this engenders guilt feelings. The story is as engaging as a detective story; we can hardly wait to see what the next scan will show and how the story of his illness will play out. It puts a human face on the cancer experience, and it would be valuable for that alone, but it is much more. The gradually unfolding episodes of his personal story are interwoven with what amounts to a primer on how to think critically about science-based medicine vs. alternative treatments. I can’t recommend this book highly enough.
Untrustworthy information
When people are diagnosed with cancer, they are vulnerable and desperate. They look for information and are likely to find cookbooks, miracle stories, alternative medicine, and “forbidden cancer cures.” Their friends bombard them with advice. Most of those sources “offer hope to people when they need it most, but have earned no right to do so.”
Burrows reads “the biggest cancer book of all time,” Anticancer: A New Way of Life, by Servan-Schreiber, and is bitterly disappointed. It offers a plan to keep cancer at bay through mental balance and diet, but he realizes that Servan-Schreiber is making unwarranted extrapolations from single scientific studies and anecdotes, and he is blaming the victim by trying to establish a lifestyle cause for a kind of tumor for which science has found no cause and which is likely due only to bad luck. Servan-Schreiber thought he had beaten cancer, but it returned with a vengeance. Then he wrote a second book. Instead of acknowledging that his methods hadn’t worked, he rationalized that he hadn’t followed his own advice carefully enough. He hadn’t done enough to control stress. Maybe he hadn’t eaten properly. He died shortly after the second book was published. People are still reading his books and following his advice; many of them don’t realize he is dead.
The cancer culture
Burrows describes the prevailing cancer culture that depicts it as a battle, calls patients brave warriors, and celebrates the victorious survivors. He says:
Cancer is not a brave battle to fight, it is a terrible disease to run away from. It is a puzzle to try to solve, something to try to keep at bay using the very best tools we have…I’m not brave. I’m just getting on. Making the most of what I’ve got. Crying, and laughing, and forgetting, and remembering, and plodding and pedaling on. Like we all do, cancer or not.
When to stop looking for other opinions
Three different specialists give him the same prognosis. His cancer is inoperable. It will inevitably progress and need treatment, but for now all that is needed is to monitor it with scans and to control his seizures with medication. Friends suggested he keep looking for a surgeon who would be willing to operate. What if he searched the world and found five doctors who wouldn’t operate and a sixth who would? Would it be rational to trust the sixth doctor’s opinion more than that of the other five? Of course not. He should trust him less. Unfortunately, many patients play this game, spend enormous amounts of money, and end up worse or no better than they would have been.
He talks about the false promises of unconventional cancer doctors like Burzynski, and the impetus to “try anything.” He says it is not reasonable to “try anything” if there is no evidence that “anything” works. People say it’s worth trying because there is no evidence that it doesn’t work. He spots the fallacy in that reasoning:
There are many millions of things that have not been proven to not cure cancer, but mostly because many millions of things have never been tried. That does not mean they are a potential cure, nor that they are sensible to pursue.
What if he proposed that blowing up 100 red balloons would cure cancer? Is that really any more ridiculous than coffee enemas? When does anything become something we should try, and who gets to decide what is too ridiculous to try? Even alternative practitioners disagree with each other. Where do you draw the line? If a treatment has not been proven to work, is not biologically plausible, has not been tested in animals, and is not backed by the majority of scientific experts, shouldn’t it fall on the same side of the line as the red balloons?
He doesn’t blame people who go off in pursuit of a promised miracle cure. He understands their desperation and the comfort of having a hope to cling to. Rather, he blames those who offer that anything without a fair, accurate, and accountable foundation. The power and responsibility to advise about cancer treatment “should only be earned by results, proof, and accountability.”
What constitutes proof?
He describes how people ignore reality to cling to their beliefs. When alternative medicine proponent Chris Woollams’ daughter survived for longer than average, he credited her alternative treatments; when her tumor recurred and killed her, he blamed her for not following his regime properly. When Wellness Warrior Jessica Ainscough died, her followers claimed it was because she didn’t do Gerson therapy correctly. Those who get both conventional and alternative treatment and survive often refuse to give credit to the conventional treatment.
…it doesn’t matter what you think cured you or made you feel better. Opinion doesn’t come into it, only the biology and science.
Testimonials abound. “It worked for me” is a kind of “social proof” but in reality is no evidence at all. In fact, personal testimonies are the enemy of proof. We hear about successes, but we don’t hear about the failures because no records are kept (until the internet anyway). To be taken seriously, a theory has to be falsifiable. Excusing failures by saying the treatment wasn’t properly followed leaves no way to determine whether it actually works. Controlled scientific studies can test whether it works; they are based on falsifiability. Proponents of alternative medicine often reject the scientific approach; they argue that their treatments are not amenable to randomized controlled trials, and that they might still work for an individual even when studies show they didn’t work for the people in the studies.
He faults alternative providers for not carrying out even the most basic scientific controls. If they have a treatment that works, they should want to inform the world. It would be simple to publish honest, even independently audited lists of all treated patients with data on all the successes and failures. The argument that there isn’t money to test alternative medicine is a red herring; even small businesses monitor their performance indicators.
Diet
Diet advice and cancer cookbooks and abound, but:
The most science has shown is that having a generally healthy diet and exercising regularly lowers our risk of getting cancer. It does not prevent cancer. It does not cure it.
The media
The media report real new developments in scientific cancer treatment right along with sensationalist stories about unreliable pseudoscientific claims. They strive for “balance” and give alternative treatments more credit than they deserve. This is wrong-headed; it’s not a matter of two politicians presenting opposing views, it’s a matter of scientific fact and expert opinion versus speculation and uninformed opinions of non-experts (and sometimes even of charlatans). The news serves to confuse rather than to inform.
Confronting rubbish
Is it rude or cruel to confront people who talk rubbish about cancer? If we don’t, are we allowing potentially more damage to be done just to avoid a personal feeling of discomfort? “How far does our reluctance to criticise mean that energy, passion and grief is channeled away from cancer cure research, not towards it?”
Ancient wisdom
Ancient practice is not always ancient wisdom…That something was being done in the earliest days of civilisation to cure illnesses should make us more wary of those treatments, not keener to try them for ourselves…progress means replacement of the old and ineffective, the unproven and dangerous, by the new and better, the proven and safer.
Religion
People ask, “What about God?” As an atheist, the question never arose for him, even though he holds a degree in theology. He explains why prayer is only likely to make those who pray feel like they are acting virtuously, and why it is logically indefensible as an attempt to improve health outcomes.
Cancer is natural
“Cancer doesn’t care about you.” It isn’t something gone wrong; it is DNA doing what DNA is supposed to do. Without DNA mutation, there would be no evolution, no us. Cancer is a natural consequence of the same mechanisms that make our hair grow and our wounds heal. There are many cancers, and half of us will get one eventually. Cancers are not always a death sentence. We can cure some of them and live with others.
Doctor-bashing
Proponents of alternative medicine love to criticize doctors, and it’s undeniable that there is a lot wrong with conventional medicine. The system is flawed. Individual doctors are not perfect; they miss diagnoses and make mistakes.
But if we exercise scepticism and doubt about medically trained doctors, oncology and conventional medicine, then we should subject alternative medicine to at least the same level of doubt and scrutiny. In fact, I would argue alternative medicine deserves far more doubt because it self-consciously puts itself outside conventional medicine that has been proven by time and experience to, mostly but not always, get it right.
Big Pharma and conspiracy theories
Big Pharma deserves blame for many sins, but it is ridiculous to say it doesn’t want to find a cure for cancer or already has a cure and is keeping it secret. He explains why those conspiracy theories are completely wrong-headed. The idea that there’s no money in natural products is easily refuted by the success of bottled water and natural health food stores.
Who is an expert?
Self-declared “experts” write books. But it only takes two minutes on the Internet to demonstrate that there are experts in that field who question or disagree with them. Failure to reveal the controversy should make readers question whether anything else in the book is true.
Burrows put his life in the hands of real experts who know far more about his tumor than any patient or self-proclaimed cancer guru. He can make choices about his care, but:
They set the boundaries between which I can make decisions. That’s the rational way to behave, and I understand that they know best.
Some major issues for society
Aysha King was a five-year-old boy whose parents refused conventional treatment in the UK and took him to Spain for a treatment that his doctors knew was not appropriate for his condition. Burrows uses Aysha’s case as a springboard to discuss some of the major issues our society is failing to deal with:
- The idea that parents know what’s best for their child
- The false claim that treatments are rejected simply on the basis of cost
- A breakdown in communications
- The role played by the newspapers, fueled by lack of information
- The strong emotions that are evoked by the plight of a sick child
Conventional medicine and alternative medicine operate in two separate universes that don’t communicate with each other. Alternative providers fail to understand the scientific realities of modern cancer treatment. Conventional providers often fail to appreciate their patients’ fears and misunderstandings. Patients are left in limbo.
As a society, we need to have a sensible conversation about dying, and not just keep patients with cancer alive longer at all costs. We should learn when to let go. A recent study found that hospice patients with an end-of-life plan not only had a better quality of life than those who insisted on every possible intervention, but they actually lived longer.
Hope
At the end of the book, his condition is stable and he is far from devoid of hope; but his hope is centered in realism and rationalism. He hopes for the possible, not for the impossible: perhaps a change in medication will better control his seizures, perhaps he will survive long enough for science to find an effective cure for his cancer. He believes that reality and science are always better than lies and belief in magic. He thinks it is a shame that patients turn to alternative medicine and make themselves ineligible for clinical trials that offer real hope for contributing to the greater good.
He predicts that believers in alternative medicine will demonize him for writing this book, but he makes them this promise:
If you can show me firm, peer-reviewed scientific evidence that your cancer prevention therapy or cure works, I will no longer call it alternative medicine. I’ll call it medicine. And if proven to work for my particular brain tumour, I’ll be first in line for a dose.
Encouraging a sharper critical eye
Burrows’ message is that we often act irrationally around cancer. He wrote his book not to advise patients about cancer treatment but to encourage people to look at the information they are given (from both conventional and unconventional sources) with a sharper critical eye. This book beautifully complements Siddhartha Mukherjee’s Pulitzer Prize-winning The Emperor of All Maladies: A Biography of Cancer. Reading both of them will help you understand pretty much everything worth knowing about cancer and the people who suffer from it.
This article was originally published in the Science-Based Medicine Blog.
