Belief in alternative cancer cures: We have a lot of work to do to combat quackery

Alternative cancer cure testimonials have been a regular feature of this blog since the very beginning, going all the way back to 2004 and the Blogger version of the blog (which I like to call Respectful Insolence, Mark I). Basically, what I’ve done for cancer cure testimonials, be they from Stanislaw Burzynski patients, celebrities like Suzanne Somers, misguided men like Chris Wark or women like Hollie Quinn, or from the parents who’ve used their religion to justify withholding science-based cancer care from their children, or from children taken to quack clinics in Mexico for brain cancer, is to demonstrate how seemingly convincing stories are damned near close to never good evidence of an anticancer effect due to the intervention used in the testimonial. Indeed, I refer to these stories as “testimonials” rather than anecdotes or case reports. In medicine, the word “case report” has a specific meaning as an organized, detailed description of a case, something that testimonials almost always lack. In reality, these testimonials are marketing, either to sell a product to make a profit, to sell a story because the patient telling the story has become a true believer in the quackery chosen, or both.

Unfortunately, these sorts of testimonials are effective. Further evidence of how effective they are comes in the form of a survey administered by the American Society of Clinical Oncology (ASCO) whose results were released earlier this week and reported in Medscape:

Nearly 4 in 10 Americans (39%) “somewhat” or “strongly” agree that cancer can be cured solely through “alternative” therapies, such as oxygen therapy, diet, and herbs, without standard cancer treatments, according to a national survey commissioned by the American Society of Clinical Oncology (ASCO).

The survey, which probed public opinion about a variety of cancer-related issues, was conducted online by the Harris Poll in July and August 2018. It involved 4887 US adults aged 18 years and older. Among the respondents were 1001 persons who currently have cancer or who have had cancer in the past.

OK, I admit that I might be making more of an inference here than can be fully supported with evidence. On the other hand, my nearly 20 years of looking at these testimonials has let me to conclude that these stories are one of the primary means by which people with cancer come to believe that alternative medicine can cure them and are thus lured into quackery. Let’s take a closer look at the survey, whose full results are here and for which the ASCO press release is here and summarizes:

Nearly four in 10 Americans (39%) believe cancer can be cured solely through alternative therapies such as enzyme and oxygen therapy, diet, vitamins, and minerals. However, according to a recent study published in the Journal of the National Cancer Institute, patients with common cancers who chose to treat them using only alternative medicine had a 2.5 times higher mortality rate than patients who received standard cancer treatments such as surgery, radiation, chemotherapy, immunotherapy, and hormone-based therapies.

Even many of those with direct cancer experience – people who have or had cancer and family caregivers – believe cancer can be cured solely through alternative medicine (22% and 38% respectively). The survey also found that younger people – 47% of people ages 18-37 and 44% of people ages 38-53 – are the most likely to hold these views.

First, I note that I wrote about the study showing that treating cancer with alternative medicine results in a much higher chance of dying of that cancer. It’s also disturbing enough that nearly four out of ten people believe something as demonstrably untrue as that alternative medicine can cure cancer, but even more disturbing that it is the youngest people who are most likely to believe this.

Examining this survey, I was puzzled. It’s a fairly wide-ranging survey that looks at a number of issues—important issues—with respect to Americans’ views on cancer and cancer care, including opioid policy as it impacts cancer patients, the financial toxicity of cancer therapy, medical marijuana use. For instance, the survey also found that 69% of cancer patients and caregivers, as well as 43% of family members of cancer patients, have experienced significant anxiety over finances and that two in five caregivers reported taking actions to reduce treatment costs, usually skipping doctors appointments, not filling pain medicine prescriptions, skipping doses of medication, and more. That’s a scandal! Yet it’s this one area that made the headlines. Yes, it’s also a scandal, but I suspect that belief in cancer quackery has been relatively stable.

One interesting tidbit not being reported on in this study is the partisan makeup of those who believe in alternative cancer cures. Remember how recently I wrote that the Republican Party has become the antivaccine party, even though antivaccine beliefs are fairly equally distributed throughout the political spectrum? It turns out that belief in alternative cancer cures is pretty much equal, at least by the crude measure of political party affiliation, with 39% of Republicans, 38% of Democrats, and 38% of independents answering yes to the statement “Cancer can be cured solely through alternative therapies, without standard cancer treatment(s).”

Interestingly, though, there were some slight differences in agreement with the statement, “Alternative therapies are a good supplement to standard cancer treatment(s),” with 75% of Republicans, 79% of Democrats, and 71% of independents agreeing with the statement. Of course, what I find alarming is that basically three out of four people accept the premise behind “integrative oncology,” namely that “integrating” quackery with oncology will improve patient care and outcomes. Certainly, the embrace of such “integrated” quackery by major cancer centers and its promotion by groups like the Society for Integrative Oncology (which is busily indoctrinating the next generation of believers) have had their effect, as has the general propaganda for and embrace of such unscientific and pseudoscientific treatments by academic medical centers.

After all, when what people perceive as bastions of cutting edge scientific medicine, like the Cleveland Clinic, sell traditional Chinese herbal medicine, functional medicine, and homeopathy, is it any wonder that the average person assumes that there must be something to alternative medicine? (It was so bad there that it took the director of the Cleveland Clinic’s wellness center going on an antivaccine rant before the Cleveland Clinic was forced to face the quackery it had embraced. It made only cosmetic changes, like firing the doctor, who went private.) Lots of people believe that adding pseudoscience to science-based oncology is a good thing, a premise that I do not accept. Basically, based at least on crude measures of political orientation like party self-identification, there is little to no detectable difference in belief in alternative cancer cures.

Then there’s the marketing. including word-of-mouth. As was noted in the story about the survey, cancer patients are “often inundated” with recommendations about alternative medicine cures from well-meaning friends, family members, and even random acquaintances. Since I started writing about these things, I frequently hear stories from newly diagnosed cancer patients who complain about how so many people among their friends, family, and social circle push them to try alternative medicine. Sometimes the advertising is more overt, too. As Liz Ball, MD, a breast cancer surgeon from the UK who herself has survived breast cancer noted:

This week, Liz Ball, MD, an oncoplastic breast surgeon in Suffolk, United Kingdom, tweeted that an alternative cancer treatment flier was “pushed through her letter box” at home. The flier advertised a 1-day seminar (cost: ₤30, lunch not included).

Ball, who tweets under the name Liz O’Riordan and is the coauthor of the Complete Guide to Breast Cancer (Vermilion Publishing), posted the flyer online. The professionally executed promotion read: “Cancer: The Latest Breakthroughs/Are chemotherapy, radiotherapy and surgery really the answers to cancer? What natural, non-toxic therapies can work, and why have these been marginalised.”

O’Riordan said she was “slightly tempted to go and stir up trouble from the audience.”

Always a good thing if you can do it, and maybe something I should have done the last time I went to an antivaccine “panel discussion.” Just don’t go alone. The point, however, stands. These sorts of alternative cancer cures are heavily promoted, and there’s a whole ecosystem on the web and on social media designed to promote them. Alternative cancer cure testimonials are a major component of that promotion.

At this point, let me circle around back to two studies that I had missed. Both were presented a week ago at the European Society for Medical Oncology (ESMO) 2018 Congres in Munich. The first study was carried out by a team from the University Hospital Mannheim, Germany, who conducted a survey to determine the use of “complementary and alternative medicine” (CAM) among 125 patients undergoing treatment at a sarcoma center.The patients had biopsy-proven sarcoma, gastrointestinal stromal tumors (GIST), and desmoid tumors, and in their survey, as is typical, CAM covered a wide array of modalities, including vitamin or mineral supplements, Chinese or healing herbs, homeopathy, acupuncture, meditation, yoga, and Tai Chi. Also included were changes in dietary habits, such as switching to a ketogenic or vegan diet. Using a structured cross-sectional questionnaire that had previously been validated in breast cancer and melanoma patients, they found:

A total of 51% of participants had used alternative modalities during the course of their lifetime; 15% only used them after their cancer diagnosis in parallel with standard treatments. The authors note that the cancer diagnosis appeared to have stimulated an interest in CAM treatments in 44% of participants.

The main reasons given for the interest in and use of CAM were to boost the immune system (78%), to help the patient feel better (76%), to help the patient cope with cancer treatment (45%), to reduce stress (53%), and to reduce symptoms or side effects (36%).

The authors noted some selectivity by patients in which CAM modalities they used, as well as a lack of knowledge about potential adverse events, but it was a lack of knowledge of which they were aware. More disturbingly, a third of patients reported using homeopathy. Of course, this could be country-specific, given that homeopathy originated in Germany and is still quite popular there compared to a lot of other countries.

More disturbing still:

Oncologists were not the primary source of information when it came to investigating CAM modalities. “When we looked at the sources of information on nonconventional practices, oncologists represented only 7%,” said Hohenberger. “In our study, patients mentioned repetitively that they were positively surprised about our interest in their use of CAMs.”

The main source of information about CAM was the Internet and other media (43%), friends (15%), and healthcare professionals (14%). Conversely, when it came to investigating information about the side effects of cancer therapies or how to handle them, almost half of patients asked their oncologist.

So, basically, patients did their own research using Google university, friends, and, of course, quacks, unlike the case for cancer therapies, where they asked their oncologist. Personally, although I wasn’t surprised that only 14% would ask their oncologist about CAM treatments, I am a bit surprised that less than half asked their oncologist about the side effects of their cancer therapies and how to handle them. This is stuff that oncologists should be all over.

The second study was presented by Audrey Bellesoeur, MD, of the University Paris Descartes, France, and colleagues and looked at drug-drug interactions (DDIs) between cancer treatment and CAM using a retrospective review of 202 sarcoma patients who were beginning chemotherapy (doxorubicin, ifosfamide, gemcitabine, trabectedin-based or other type) or treatment with a tyrosine kinase inhibitor (TKI). The group included 122 patients with soft-tissue sarcoma and 80 patients with bone sarcoma, of whom 86% were undergoing treatment with chemotherapy, and 14% with a TKI. Patients in the group received a median of three drugs, and 65 of them patients (32%) received at least five drugs. Unlike the previous group, in this group only 34 patients (17%) reported using CAM.

The authors found:

The investigators identifed 37 major potential interactions. On univariate analysis, the number of drugs (P < .001), performance status (P = .04), pain (P = .002), and use of antidepressants (P < .001), proton pump inhibitors (PPIs) (P < .001), and TKIs (P < .001) were identified as risk factors for DDIs.
The use of TKIs, PPIs, and antidepressants remained significant in multivariate analysis (P < .02).

A pharmacist performed 157 medication reconciliations and recommended 71 interventions for 59 patients (24%). These included discontinuing 34 drugs, replacing 16 others, adjusting doses in two cases, and monitoring 19 others. Pharmacist interventions occurred more frequently for patients treated with TKIs than for those receiving chemotherapy (63% vs 17%; P < .001); 29% of these interventions involved CAM.

“In our review, 29% of drug-drug interactions requiring pharmacist interventions were associated with complementary alternative medicines,” Bellesoeur said in a statement. “Risks of interactions with nonconventional drugs are the same as for other co-medications, mainly increased toxicity and loss of efficacy of anticancer treatments.”

There is, however, a problem, though, which is why this might be a significant underestimate. That problem is that there is little information on the composition of these products and, therefore, their risk of toxicity or interaction when used in combination with other agents.

Taking the bird’s eye view, the situation that we have now is that a very large minority believe in alternative cancer cures, a minority that includes nearly half of young people. Going along with that, a large majority of people believe that adding alternative medicine to conventional science-based cancer treatment is a good thing. It would have been interesting to see what the overlap between those two groups was. For instance, how many of those who believe in alternative cancer cures also believe that adding alternative medicine to conventional oncology treatments is a good thing. My guess is that it’s a smaller number than you might think, given that belief in alternative cancer cures often goes hand-in-hand with extreme distrust of chemotherapy, which could lead those who believe in alternative cancer cures to think that adding alternative medicine to chemotherapy would be a bad thing because the chemotherapy is still being used. I also would have liked to probe attitudes towards conventional cancer treatments and compared them between people who believed in alternative cancer therapies and those who did not. I suspect I know what would be found, but what I’m not sure of is the magnitude of the differences.

Of course, answering a survey (which has nearly no possible negative consequence) is different than facing a life-or-death diagnosis like cancer and having to decide upon treatment (which most definitely does). Nowhere near 40% of cancer patients decide to treat their cancers “naturally,” because the specter of possible impending death has a way of focusing the mind. Nonetheless, the high prevalence of belief in such quackery shows just how much misinformation about cancer is out there, being spread through multiple means. Even though this survey was clearly limited, we have a lot of work to do. A lot of people believe in alternative cancer cures and don’t know the potential downsides of pursuing them. It’s a problem that’s likely to be even more difficult to tackle than antivaccine conspiracy theories, given that antivaccine views, although associated with the same sort of world view as belief in alternative cancer cures, are not held by nearly as large a percentage of the public.