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.
32 replies on “Belief in alternative cancer cures: We have a lot of work to do to combat quackery”
It’s getting depressingly easy to find 4 in 10 Americans who believe Any Damfool Thing.
well mr orac ..hmmm yes u have gone thru a lot of stuff here ..a well set out of the numbers ..too & fro …and breast cancer is your line of work….we could talk & debate the cancer scene for ever ..but some where some one we have to nail it in the big picture cbd/hemp products immuneathapy seemed to escaped mention here…something is up with …the big pharms…drugs in australia appear to be in free fall cost wise only this week key truda thru the gov pps scheme has dropped from $11.300 a script too $30 odd or if a concession holder ..pensioner $6,40 a time telling me they are having & going forward the total loss of billions of $/s so want to lock in deals because they know what is ahead ??? as u & all know many of peoples videos on line & utube have to be seriously be evaluated as un medically sound as they may be ??? like i have said before prevention& cures may come from the masses …as the big houses in all areas all have their own vested interest in the name of profit for them selves & share holders /others im just saying orac.cheers from oz happy bob
What??
Don’t bother. Our “friend” here is in a perpetual state of baked.
Word salad…. with E. coli
@ bob,
Cut to the chase, bob. A non-profit organization emphasizing a natural therapeutic-approach (e.g., natural allergy oncology) will most likely discover the next major breakthrough in cancer research. Your words speak volume in a visionary way, my RI friend.
Another day, more incoherent babbling from down under.
Yep.
Said person’s incoherent postings surely must test our host’s patience. It’s even more annoying than the drive-by trolls or true believers afflicted with copy-pastitis or fetishists whining for attention. Orac is a better perspex box of blinking lights than I could ever pretend to be.
Yeah, but even I’m starting to lose my patience.
Right. And Orac has more than one to deal with.
#notallaussies ?
Vocatus adductus? (Alcohol induced)
Alain
Surveys are typically blunt and distorting tools. The statement “alternative medicine can cure cancer” can be interpreted different ways. For example, some respondent might take it literally and answer in the affirmative if they think one person, one time, might have ‘beaten’ cancer with some diet regime. Yet, they might believe such instances are rare, and that alternative medicine alone is far from the best choice for dealing with cancer. Something like this would help explain the apparent contradiction between the 40% belief alt med isn’t totally useless, the 75% belief alt med is a “good supplement” to conventional treatment, and the fact that the percentage of patients who choose to treat their cancer solely “naturally” is thankfully much, much lower. I mean, what does “good supplement” mean? That’s the kind of classic survey item that would likely be answered quite differently if it was phrased differently. Folks might answer in the affirmative if they think only ‘well. it couldn’t hurt’ or that the CAM might be a useful distraction… rather than any belief in magic.
In the end, I’d guess the numbers of folks who are true believers enough to trust their cancer treatment exclusively to quackery are similar to the numbers of true believer anti-vaxers. What’s different is that anti-vax has lost a lot of its ‘maybe?’ plausibility with a broader public, while alt med cancer treatment hasn’t.
While I think the seemingly wide credibility given to alt med cancer treatments is probably weak, limited, and highly conditional, I do think Orac is right that it is largely based in testimonials, originating in promotional material and credulous stories in the tabloid press, then spread further via word of mouth and social media. ‘Good’ testimonials work for pretty much everything. Humans are pretty much hard wired to give high value to the relation of personal experience –– which after all was the only way to gain knowledge through most of our species history. One should never underestimate the role of identification in communication and persuasion. Identification is partly a function of richness in detail, which is one reason the results of systematic scientific studies aren’t persuasive. They’re not only cold, but crude.
What this means, I argue, is that tackling this problem with science alone is guaranteed to fail. Rather the strategy should be to lead with counter-testimonials, personal stories of loss to quackery, and redemption by return to real medicine, and then back that up with the scientific evidence.
sadmar fresh air ..fantastic… cheers happy bob from oz oohhmmm eh ..not baked .ha ha
A few kangaroos loose in the top paddock?
A sandwich short of a picnic.
One card short of a full deck. Not quite a shilling. One wave short of a shipwreck. Not usual top billing. Coming down with a fever. Really out to sea. Kettle’s boiling over. Thinks he’s a banana tree…
Excellent point, Sadmar. How the survey is phrased, and how the wording is interpreted, can cause all manner of mischief with the outcome. At some point there needs to be a mechanism for “pre review” of surveys and questions, to deal with this issue before efforts and funds are wasted producing shaky results.
Agreed, we need our own testimonials. Mostly those should be testimonies from survivors who made full use of SBM. It would perhaps also be effective but probably seen as crass, to stick mics in the faces of people who are on their death beds due to having wasted precious time imbibing cr@p instead of getting the surgery and medicine that could have saved them. OTOH, the case of Steve Jobs is well enough known, that it could be used for a one-minute video. “What else would Steve Jobs have invented, had he been around today? We’ll never get to know, because he chose to use alt med to treat his liver cancer, until it was too late. Sometimes geniuses make fatal mistakes. Learn from that and don’t repeat it.”
I’ve said many times that we need our own testimonials. Here’s the problem. Dead patients don’t give testimonials. Also, those who are still alive, but dying, or even those who turned back to science-based oncology in time to save their lives tend not to want to publicize the mistake that they made when they embraced quackery instead of known effective treatment. There are embarrassment and shame involved. It’s hard to convince them to tell their stories publicly, and the same problem applies to their families and friends, who either encouraged their embrace of quackery or, if they didn’t, feel guilty over having failed to dissuade their relative from taking such a self-destructive course of action.
A corollary to this is that the alternative cancer cure testimonials of patients who did well for a while but then later took a turn for the worse and died of their disease often live on forever, uncorrected. I’ve seen lots of testimonials like this, where I know the patient died of his or her disease but the testimonial never dies.
Thank you so much for all you do to combat the quacks that take advantage of the most vulnerable in our society: the medically ill. This person, Season Johnson from Shasta, California spews our her own brand of science and anti vaccine detoxing regiment (of course one must buy her oils and she is a diamond level rep at DoTerra at this point). She is telling pediatric oncology parents to deny the Flu Vaccine https://www.seasonjohnson.com/i-have-cancershould-i-get-the-flu-shot/
She has a disclaimer at the bottom of her website of course — takes zero responsibility if one is to follow her brand of natural therapy instead of chemo. She acknowledges that it saved her son’s life— but gives her diet plan and oils more credit than they deserve.
I had the misfortune to find the web site of “Dr” Veronique Desaulniers. She has a video on YouTube of how she “cured” her breast cancer with black salve! Oh my giddy aunt.
I’d be interested to know if she actually had breast cancer or if she self diagnosed – she is a chiropractor by training.
It seems to me the real question is what fraction of people diagnosed with cancer will go right to a doctor and accept the treatment recommendations. Then, some of them will accept vegetable supplements and whatnot essentially on the basis of “what could it hurt?” The reply to the questionnaire would then be equivalent to a little wishful thinking on their part.
That doesn’t mean that the answer to the question is at all correct, or that the folks have any scientific neurons. It just means that an average selection of untrained people show the current level of critical thinking and scientific knowledge in the population. We might also remember that in the U.S., there is a substantial fraction of the people who have a vested interest in making sure that school children are not taught scientifically critical ways of thinking as it might leave to belief in evolution.
What could it hurt?! If the vegetable supplements and whatnot don’t really do anything to help fight the cancer, they’d just be giving the cancer its chance to grow and spread, as my mother, despite my desperate pleas to go with a real doctor, found out to her sorrow. I have an urn with my mother’s ashes in the cathedral crypt to testify against “what could it hurt”!
Just last week, I booked myself in for checkups with my two cancer surgeons. In both cases, I was exceptionally lucky. The treatment recommended was surgery followed by aggressive surveillance.
Along the way, I have been dosing myself up with the various herbs I grow in the garden. Basil on pizza, tarragon with Mediterranean lamb, sage with chicken, rosemary with roast lamb, thyme with roast chicken, etc. In particular, I have found hops in homemade beer and juniper in gin and tonic to be very helpful. Yes the CAM stuff has been most enjoyable as part of my recovery.
As for that homeopathy and coffee enema crap, yes you know where you can shove that.
I mean seriously, I expect that people will take my advice when they have wicked weed control problems and not search the web for ignorant numbskulls recommending salt and vinegar (I mean fabulous for chips, but pretty useless for weed). So why would I go looking for ignorant numbskulls to give me advice about treating cancer?
Don’t plant mint in the garden (and rosemary should also be container-grown if you want to overwinter it).
The 14% who felt they needed to ask their Oncologist about the side-effects of treatments, may be the minority who have a bad relationship with their doctor, and assume the same will apply to their Oncologist. The 86% who don’t see the need, likely assume that the Oncologist will tell them everything they need to know. The whole thinking a professional will behave.. professionally.
Hopefully with age the youngsters will re-discover the joy of science and why it just plain works, unlike the magical horse-shiat. Unfortunately it will likely mean the death of a number of stupid people before they re-consider. Everyone believes in something unreal when they are young. Most grow out of it from life beating the magical thinking out, some maintain a hold on magic even after it’s been proven to be nothing substantive.
[…] Belief in alternative cancer cures: We have a lot of work to do to combat quackery November 1, 2018 […]
I am being shown very personal testimonials almost daily on the spousal iPhone of the brother who was “a dead man” according to the way it is told in the family. He has pancreatic cancer (no details on type available to the outcast atheist of the family). Conventional treatment was the original path, but when it failed and hospice was (reportedly) recommended, the granddaughter went off to the Googles to find….a clinic in Mexico offering…. stem cells! (Referred to by a naturopath in Arizona).
It pains me (in a way, of course) that the bil is now eating regular meals, walking and planning to go to the family’s annual Thanksgiving pilgrimage to Vegas–although phone photos still show a very sick man in my view.
What’s a skeptic to do? Perhaps the stem cells have had some effect–there are a lot of (legitimate) trials going on in the US, but I have to wonder what is going on in this case. Oh, yes, he is still getting some level of conventional treatment at an Arizona hospital he has been in and out of. They would not clear him to travel home to Wisconsin, but have now said he can go to Vegas.
Is this just a mush of positive spin from the loving family that their extensive prayers have been answered? Or just a fluke–as in outlier patient? Or possibly some real benefit from the stem cells?
I do value the opinions shared here (excepting the obvious), so will check back. I am in a very frustrating position here.
Please don’t lump all of us downunder in the same mass as Bobby….
I would much rather BigPharma tampering with my port-a-cath (thanks for saving my life) than some BigAlternativeSupp tampering with a coconut oil infused plastic hose telling me to enjoy my coffee shot from the wrong end and offering me a green concoction that smells of a frog pond.
Also, I wish that Orac could review the movie ‘The Food Cure’. So alarming how many are singing its praises….
As for “Dr.” Veronique Desaulniers D.C., a.k.a. the “Breast Cancer Conqueror”, she is also (major surprise!) antivaccine.
By diligent web searching, you can find her trailblazing article which proclaims “HPV vaccines can lead to nervous system disorders, autoimmune diseases and cancer”.
Apparently one cannot practice quackery without simultaneously tearing down legitimate medicine.
[…] by the American Society of Clinical Oncology (ASCO) recently, belief in alternative cancer cures is prevalent in the US, with 39% of the population agreeing with a statement that alternative medicine “natural […]