For Eileen O’Sullivan, being diagnosed with breast cancer in 2013 was the catalyst for a deluge of distinctly unscientific and frequently dangerous advice. An investment manager with an analytical mind, she began seeking information to better understand her potentially life-altering condition. But from the moment Eileen starting searching online, misinformation was unavoidable: "This is all the suggestions start rolling in," she says. “Before diagnosis, I had never heard of crank treatments for cancer: herbs, supplements, diets, juicing, clean eating, homeopathy, essential oils, nor adverts for overseas alternative cancer clinics. I certainly didn't look for them, but I got endless prompts based on keywords such as breast cancer. I was also inundated with relatives and friends coming out with crackpot therapies – and even from other patients in chemo wards and waiting rooms. "
As a cancer researcher deeply involved in science outreach, I can attest to that few subjects. There is a family in the world untouched by the disease, and the word itself is enough to induce a sense of fear in even the hardiest among us. Cancer is oppressive and all-pervasive: half of us alive today will experience a direct brush with it. But despite its ubiquity, it remains poorly understood and falsehoods around it can thrive.
Online, dubious claims about cancer are rife, from outright "cures" to assertions of conspiracy to suppress "the truth" about it. In 2016, more than half of the 20 most shared cancer articles on Facebook consisted of medically discredited claims. And this goes far beyond Facebook – the Wall Street Journal recently revealed that YouTube was hosting accounts with thousands of subscribers that promoted bogus cancer treatments. O’Sullivan’s skepticism gave her some immunity to the empty promises. But having lost her mother to breast cancer, "fear left me more vulnerable to pseudoscience than I would care to admit," she says.
She is now a passionate patient advocate, driving away from damaging falsehoods – a problem she sees as unrelenting. This assessment is made by Dr. Robert O'Connor of the Irish Cancer Society: "Practically all patients are exposed to misinformation, (coming) average".
A quick web search reveals ostensible treatments from the vaguely scientific-sounding to the profoundly esoteric. The US Food and Drug Administration's (FDA) non-exhaustive list of debunked claims numbers more than 187, while Wikipedia's list of bogus cures run from "energy-based" to "spiritual healing". Other claims involve hyperbaric oxygen therapy, cannabis oil, shark cartilage, ketogenic diets and baking soda.
There is increasing concern that such fictions risk eclipsing reputable information. Macmillan Cancer Support recently appointed a nurse specifically to debunk online stories, prompting the Lancet Oncology to comment: “How has society got to this point, where were unproven interventions chosen to be evidence-based, effective treatments? Unfortunately, disinformation and – frankly – lies with the same magnitude as verified evidence. "
Similar concerns are echoed by Cancer Research UK as well as the Wellcome Trust. People are often driven by the "cancer", others are commercially driven. Sonya Canavan, another cancer survivor, noted: "In the breast cancer patient forum, I often saw" patients "posting about all kinds of quackery, who turned out to be salespeople trawling for business."
That pseudoscience is being hawked to vulnerable patients is not a new problem – cancer scams have existed for decades, and combating them was the impetus behind the 1939 Cancer Act. The substantial difference now is the ease with which falsehoods can be disseminated. Cancer surgeon David Gorski, professor of surgery and oncology at the Wayne State University School of Medicine in Detroit, Michigan and managing editor of the online journal Science-Based Medicine, notes that cancer is misinformation is "more prevalent now for the same reason" and "they are so easily spread on social media."
The net impact of such misinformation is overwhelmingly negative. Patients engaged with unpredicted treatments for cancer are more likely to reject conventional treatment, or delay life-saving interventions. This comes at a terrible cost; patients who subscribe to alternative approaches are more than twice as likely to die in the same period as those who rely on conventional therapies. Worse again, it is not uncommon for promoters of dubious information to resort to scaremongering over conventional therapy. Both radiotherapy and chemotherapy are frequently dismissed as "poisons", imperilling lives. Cancer is frightening, and promises of simple cures can be alluring.
All false claims betray the same basic misunderstanding, however: cancer is not a monolithic entity, but a family of more than 200 known diseases. Arising from mutations in a patient's cells, cancer is extremely complex and different. It is highly unlikely that a single "magic bullet" could treat cancer in all its forms. The idea of a panacea is attractive, but woefully misguided, and a klaxon warning of dubious science. Unscientific interventions can nevertheless as with substantial price tags.
Based in his Texas clinic, Stanislaw Burzynski claims to cure cancer with a unique "antineoplaston" therapy. Despite operating for decades, according to the US National Cancer Institute (NCI) "other investigators have been unable to duplicate these results". Since its inception, the clinic has been the subject of numerous FDA warnings yet to promote itself as capable of curing patients. And it does not as cheap – the US NCI warns patients that treatment costs upwards of $ 7,500 to $ 10,000 monthly (£ 5,600 £ 7,580) and says: Controlled clinical trials are necessary to assess the value of this therapy. "
Despite negative publicity, it’s business as usual for Burzynski. If anything, crowdfunding may have made his clinic more popular. In lieu of scientific evidence, it relies on gushing testimonials to lure new customers, though in some cases, these as from patients already deceased – a fact absent from the promotional material.
This is contemptible, but in no way unique – there is an abundance of dubious clinics worldwide promising the impossible at eye-watering prices. Last year an investigation on Irish television probed clinics in Istanbul that were claiming huge successes with unconventional therapies. Patients were charged more than € 130,000 (£ 116,000) and given the all-clear in Turkey. According to the program, patients discovered their progress had markedly when scanned after returning home. Germany, too, is home to several effectively unregulated clinics, presented as luxury spas but promising cures. These are backed by fawning testimonials pitched at international customers, with treatments costing despite no evidence for their efficacy.
Such exploitation goes beyond the immediate victims, with crowdfunding typically used to meet their exorbitant prices. TO paper in the British Medical Journal last year, based on figures collected by the Good Thinking Society, found that at least £ 8 had been raised since 2012 in the UK alone for unsubstantiated or discredited cancer treatments. As Good Thinking Society project director Michael Marshall explains: "Sums raised through crowdfunding are the most common of the icebergs, with many patients taking out loans, mortgaging their houses, and spending their life savings. When these supposed cures turn out to offer no benefits, families have been left with huge debts when they are grieving for their loved ones. "
To explain the paucity of evidence for their claims, purveyors of quack remedies accuse the medical and scientific community of suppressing cures for cancer. This is not a mere fringe belief – 37% of Americans believe the FDA is doing just that. But the claim is nonsense. It would require a vast conspiracy of hundreds of scientists and doctors to sustain – a scenery unlikely to endure.
Plus, if there were such a conspiracy, wouldn't those who work in the cancer sphere be just as susceptible to its malignant influence as anyone? We all loved cancer, and succumb to it. Conspiracy claims foster distrust between patients and healthcare teams.
The laughed in cancer misinformation is part of a wider problem with online falsehoods. Like the equally dangerous explosion in anti-vaccine myths, cancer untruths have an impact on both our physical wellbeing and the public understanding of science and medicine. In sea of sound and fury, discerning between reputable and repugnant is not easy, but there are resources available for patients and their families. Well-researched guides by Cancer Research UK and the US National Cancer Institute are enlightening and authoritative.
Like anti-vaccine sentiment, cancer myths thrive on social media. There is a strong argument that these platforms have a moral obligation to remove groups and individual propagating misinformation. As O’Sullivan notes, “Facebook, YouTube and Twitter lead to a patient down to rabbit hole, with many thinking this is‘ doing their research ’. I don’t think we can stop those making false cancer claims, but we can insulate patients and regulate those making cancer claims as well as holding social media platforms.
Several social media platforms have promised to massage their algorithms to reduce "fake news" on cancer. But this filtering is easily bypassed. Social media business models thrive on engagement rather than veracity, and a cynic might think they have little reason to regulate such content, beyond appearing to be concerned. Whether the problem is absence of ability or inclination, health misinformation remains widespread. It is imperative to improve our ability to assess medical claims: our continued wellbeing depends on it.
Dr David Robert Grimes is a cancer researcher, physicist and science writer. His first book, The Irrational Ape: Why Flawed Logic Puts Us All at Risk, and How Critical Thinking Can Save the World, will be published by Simon & Schuster in september
. (tagsToTranslate) Science (t) Cancer (t) Health (t) Society (t) Cancer research (t) Medical research (t) Internet (t) Technology (t) Facebook (t) Social networking (t) Media (t ) Crowdfunding