Through stories and fairy tales, many have come to believe in the possibility of overcoming insurmountable obstacles. So, it’s easy for some confronted with the monster that is a cancer diagnosis, in the midst of fear and desperation, to believe they can overcome and find a miracle cure.
Encouraging this belief is a wealth of misinformation available on the Internet which can stoke ideas about finding a treatment using a method science hasn’t discovered. Now you have patients who are choosing essential oils and crystals over surgery and chemotherapy in hopes of finding a cure for cancer that oncologists haven’t caught onto yet. Welcome to the world of alternative medicine, a new sort of health “epidemic” more doctors are seeing every day.
“It’s a natural human impulse,” said Dr. James Yu, MD, MHS, a Yale Medicine radiation oncologist who is part of Yale Cancer Center, New Haven, Connecticut. “I understand where they're coming from. Cancer treatment and its side effects are very, very scary. I understand the desire to avoid potentially disfiguring or toxic therapy...It’s the human impulse to control your own destiny. Unfortunately, there are people out there taking advantage of that human impulse.”
Yu said the market for alternative medicines or therapies for cancer is large, perhaps even more so than doctors realize. Though the use of alternative cancer treatments is understudied, Yu said most doctors do know it’s “prevalent.”
“Anecdotally, we feel it’s increasing,” said Skyler Johnson MD, assistant professor at the University of Utah School of Medicine in the department of radiation oncology in Salt Lake City. “In a lot of cases, patients aren’t telling their doctors this is what they’re doing. It’s incredibly difficult to study.”
Yu and Johnson, alongside Yale Medicine internist Cary Gross, MD, radiation oncologist Henry Park MD, MPH, are pioneers where alternative medicine is concerned. They published a study in the Journal of the National Cancer Institute in January 2018, comparing patients who chose to use alternative medicine alone to treat their cancer vs those who received traditional, recommended treatments. What they found was those who declined traditional cancer treatments in favor of alternative medicine had a higher risk of death (hazard ratio [HR] = 2.50, 95% confidence interval [CI] = 1.88 to 3.27).
The group also published a paper in JAMA Oncology in October 2018 looking at patients who received some form of traditional cancer treatment in addition to alternative medicine. The patients used in this study ranged from those following all recommended treatment methods on top of some forms of alternative medicine to people who fell in the middle (some who may have chosen surgery, but eschewed recommended chemotherapy in favor of alternative medicine).
What they found was of 1,901,815 patients, 258 used complementary medicine. These patients did not delay the initiation of recommended treatment, but were more likely to refuse surgery, chemotherapy, radiotherapy, and hormone therapy. The use of complementary medicine was also associated with a poorer 5-year overall survival compared to patients who didn’t use complementary medicine (82.2% [95% CI, 76.0%-87.0%] vs 86.6% [95% CI, 84.0%–88.9%]; P = .001) and a greater risk of death (HR, 2.08; 95% CI, 1.50-2.90).
“In a general sense, these papers both show similar things and that’s that people who chose to use non-traditional cancer treatment and refused some component of conventional cancer therapy were at an increased risk of death,” Johnson said.
Johnson is studying the sources where people get information on alternative medicine. He himself has heard patients talk about healing crystals and energy, bee sting therapy, black salt, CBD oil, and Vitamin C IV therapy, the details of which have spread through Facebook, misleading medical websites, and even word of mouth.
Johnson knows firsthand how easy it is to stumble upon medical misinformation. When his wife was diagnosed with Hodgkin lymphoma seven years ago, Johnson, two years into medical school at the time, went online to get answers. There, he got a firsthand perspective of what many patients see when they search their diagnosis.
“There was a mix of valuable search items and things not very valuable,” he said. “It was an eye-opening experience like ‘ok, this is what our patients see when we hop onto Google.’ I can totally empathize with people who have questions, or they're interested in some other things because in a lot of cases they sound so great...the reality of the situation is a lot of that information is misinformation and it’s not accurate. It’s not only shocking to see firsthand, but disturbing.”
With that in mind, he says building trust with a patient is crucial and making it clear you have a common goal of beating cancer. Asking about what alternative medicines patients are using without stigmatizing it can help get them to open up on what alternative treatments they’re considering.
Johnson also suggests embracing cancer centers which offer services that fall under the “mind body therapy” umbrella, such as massage therapy, exercise classes, and nutrition advice. Staff at these centers can often be advocates for not refusing treatment, he said.
Yu said he tries to listen and understand patients who come in decided on using alternative medicine and provides them with evidence and assurance that the recommended treatment works. He often allows patients to continue their alternative treatments if they’re not harmful and they find them helpful.
“There are many unscrupulous people pushing unlicensed and unproven therapies to vulnerable people,” Yu said. “If patients are receiving therapy that’s harmful, we need to keep an eye on this. We can keep an eye on other epidemiological trends. We have to keep an eye on people refusing cancer treatment.”