I was spending a warm summer night with family and friends when an otherwise unremarkable conversation took an interesting turn. On hearing that I am a doctor specializing in cancer, a friend described in detail how a locally made nutritional supplement had kept his colon cancer at bay. He emphatically attributed his survival to this unproven therapy saying, “Without it, I don’t know where I’d be. Probably be dead.” Interestingly, it became clear as we discussed the course of his treatment in more detail that he had also received surgery and chemotherapy, the primary conventional treatments for his stage and type of disease.
Ascribing a cure or improved survival to unproven therapies, despite having also received traditional therapies is a frustrating, albeit common phenomenon, which encompasses multiple cognitive biases including the availability cascade, a self-perpetuating/reinforcing cycle wherein a belief gains more plausibility the more it’s repeated in public discourse, and confirmation bias, the inclination to interpret information in a way that reinforces a person’s preconceptions.
Knowing whether a person or website is providing reliable information can be extremely difficult. I’ve previously described the massive amounts of misinformation that I encountered online after researching my wife’s cancer diagnosis. Websites and social media can be used to spread misleading endorsements of unproven therapies (which I have written about here and here).
Evaluating the credibility of cancer information is an extremely important skill for patients and families. In order to address this need, I created a scorecard (inspired by general library guidelines on evaluating web-based resources) to assess the accuracy of cancer information online.
The CRAP Test:
Conspiracies or Claims too good to be true
Conspiracy theories are just one of many ways that alternative medicine practitioners and marketers try to discredit medical research and doctors. It’s even mentioned by some patients who believe that there is a better more “natural” way, which has been hidden or suppressed by doctors and researchers. Most of the conspiracies are repeated and include some combination of the following ideas:
The Current Treatments are ineffective
-We’ve made no progress in treating cancer since ‘The War on Cancer’ started
-The treatments are
worse than the cancer. Surgery, chemotherapy and radiation only cut, poison and burn
We’ve made incredible advances in the treatment of many cancers, some of which carried a death sentence just 50-60 years ago. Treatments are constantly changing based on the results of clinical trials and ongoing efforts are being made to reduce side effects from treatments.
Cures are being suppressed for profit
-The “cancer industrial complex” is suppressing new discoveries so they can keep profiting off old treatments
-Doctors and “big pharma” don’t want a cure because there’s no money in a cure
This argument is really upsetting to me. It’s beyond absurd to assume that there is a cure, which was hidden from my wife, and that I continue to hide today in the name of profit. With few exceptions, Oncologists are committed, hard-working and deeply caring individuals, who chose their specialty because they are passionate about curing and preventing cancer. Many of them, myself included, have had family members affected by cancer. Ask yourself it makes sense that they would allow their loved ones or patients to suffer.
There are natural cures that work
-Natural cures will never be studied because they cannot be patented
-Doctor X can cure cancer using natural substance Y (here you can also fill in the blank with diet, positive thinking, or some other unproven therapy) but was shut down by the FDA
I’ve previously written about the false marketing claim of “All Natural.” Some of the cancer therapies we use today could be considered natural and have been patented. The role of the FDA is to ensure that drugs are safe and effective. When doctors are using therapies that are unsafe or unproven, they are investigated by the FDA, and rightly so.
Claims that are too good to be true often include phrases like “no side-effects” or “Miracle Cure” and take the form of personal or online testimonials. As an example, recent news reports described a man who was using crystals and energy healing for cancer treatments. He advertised online on his website, Star Magic Healing, which included claims of miraculous recoveries in the form of patient testimonials. Testimonials he later admitted he had created himself.
Requests for money
Websites that sell online consultations with “experts,” supplements, books or DVDs are NEVER reputable and should immediately raise red flags. Belle Gibson became famous after she claimed that she beat brain cancer with nutrition and natural remedies. What followed is a tale of caution for cancer patients and families who are apt to believe such stories. Belle started a successful blog, app and cookbook. She built an empire on her claims that a refined sugar-free and gluten free diet, as well as oxygen and Ayurvedic medicine cured her. Her story began to unravel after she failed to use money for charity as she advertised. Other details began to emerge that raised questions, and Belle later admitted that she never had cancer. She was fined more than $300,000 dollars for profiting off her lies but not before she likely misled well-meaning family members and cancer patients.
Anecdotes are stories told by family, patients, websites or news media. Like my example above, vital details can often be left out. One popular alternative medicine website, which I refuse to link and give further attention, is written by an individual who had curative surgery but claims alternative therapies are what cured his cancer. Not surprisingly, he sells consultations and advice through his website. Popular news sources often confuse alternative therapies with complementary therapies and publish headlines like: ‘Woman, 28, used natural oxygen therapy to CURE her stage 4 mouth cancer – and now she’s in remission’ despite stating that she underwent a curative surgery (however, she did decline radiation). There are many examples like this, which is why trust in anecdotes is not recommended.
The publisher of online material is important to identify. Many authors of websites or other online content have no credentials whatsoever. Other individuals may have professional sounding titles and can even be MDs or PhDs. However, cancer information published by individuals should not be trusted unless given by an Oncologist, preferably one who is board-certified. The most reputable sites are those domains ending in .edu or .gov, and these generally provide the most accurate and unbiased information. There are other science and evidence based medicine websites including hospital websites. However, be aware that people will create false information and attempt to claim they originate from famous hospitals to give it credibility. Recently, there was a “cancer update,” that made the rounds on social media and via email that falsely claimed it originated from ‘John Hopkins’ (note that the name of the hospital is Johns Hopkins). Among other things, this claimed that modern cancer treatments don’t work, sugar feeds cancer cells, cancers thrive in acidic environments, and dietary changes can cure cancer, all claims which are total CRAP. Johns Hopkins in response later published a thorough debunking of this fake update. Always check the sources and authors of online material.