One of the most common topics of this blog is the alternative medicine cancer cure testimonial. Basically, these testimonials consist of a cancer patient telling a story of how alternative medicine saved him or her from cancer. They tend to consist of two varieties. The first variety is the patient who underwent a partial course of conventional therapy. In the case of breast cancer, most commonly the woman has undergone surgery but no chemotherapy, hormonal therapy, or radiation therapy, deciding to undertake quack treatments after surgery. Inevitably, the person doing the testimonial credits the quackery for her being still alive, even though it was the surgery that cured her. (Chemotherapy and radiation after surgery for cancer decrease the risk of recurrence; they are not the primary treatment.) The other variety of alternative cancer cure testimonials consists of patients eschewing all conventional therapy for quackery. The stories of this type that we've seen generally come from patients who have done better than expected. You don't hear about the ones who don't, because their cancers progress and they usually die unless conventional treatment can salvage them.
In my career, I have been fortunate enough that I have not often seen patients who decided to eschew conventional treatment for cancer in favor of alternative medicine that is ineffective. When I have, these patients have been memorable—and not in a good way. For instance, when breast cancer patients don't treat their tumors—and, make no mistake—alternative medicine is basically the same as no treatment, given that there's no evidence for antitumor effects from the treatments—the results can be horrific. Unfortunately, I'm not alone. Australian oncologist Ranjana Srivastava has also seen these patients, and she's used her experience with them to discuss a cancer fraud we've met before: Belle Gibson. Basically, Srivastava took the case of a cancer quack and ran with it, under the title of Belle Gibson mimicked countless fake healers. They aren't delusional.
Gibson, you recall, is a young woman who claimed that she had kept brain cancer at bay for four years without conventional medical treatment using a vegan lifestyle. Based on her compelling story, appealing personality, and marketing savvy, Gibson used her story to build a "wellness" empire, complete with books, videos, frequent television appearances, and speaking engagements. There was just one problem (well, several, actually). Gibson's story didn't add up, leading some observers to wonder whether she ever actually had cancer at all. It turns out that those suspicions were well-founded. More suspicions were raised when charities to which Gibson claimed to have donated profits from her book The Whole Pantry reported never having received any money from her. Things degenerated from there, with Gibson lashing out at her critics as her empire crumbled. Her Apple Watch app was pulled (this was around the time the Apple Watch was first released), and her book removed from sales. As Gibson's claims unraveled, her supporters turned on her. Last month, Gibson was in the news again as legal proceedings against her initiated by Consumer Affairs Victoria (CAV) led to a judge ruling that Gibson had engaged in misleading and deceptive conduct in claiming that she had terminal brain cancer and donated a large percentage of the proceeds from her book to charity. She was hit with an initial fine of $30,000 on pain of jail if she doesn't pay and could be on the hook for a six-figure penalty.
Srivastava begins to make her argument by pointing out something that doctors not infrequently forget:
Imagine for a moment being diagnosed with cancer and being one of the 14 million people worldwide each year shattered by a diagnosis that sinks the heart like none other. If you are lucky enough to live in one of the handful of sufficiently resourced countries, you get to meet an oncologist.
The oncologist says that your cancer is treatable, even curable, but you will need an intensive course of chemotherapy. The list of side effects is long and individual but in general terms you can expect nausea, vomiting, immune suppression, lack of appetite, nerve damage and organ dysfunction. You will almost invariably feel fatigued and should plan to take time off work. Your hair may not grow back and your fertility may never return. Anxiety and depression may become your constant companion.
While you are still getting past the shock of the diagnosis, you are given a bunch of papers to read and sign so treatment can begin. And since the oncologist lost you at “I am sorry, it’s cancer”, all you can hear in your ears is the din of, “I will die” and almost certainly not the bits that follow, like the modest but promising gains in therapies, improving survival rates and your doctor’s unprecedented access to advocacy on your behalf at the touch of a keyboard.
She's right. We not infrequently have to see patients more than once before the information we're trying to give them actually starts to sink in. The reason is that many are so upset after learning that they have cancer that their brain shuts down. No, that's not quite right. Basically, they're so busy dealing with the shock and fear, convinced they're going to die, and playing out scenarios about what happens to their loved ones and how long they might have left that very little that they hear after those dreaded words, "You have cancer," sinks in, other than perhaps that they need chemotherapy and could be very sick for a very long time.
Then, after they leave the doctor's office, all too frequently this happens:
While waiting at the school gates, you scrub your tear-streaked face and find distraction on Facebook, where you are obviously drawn to cancer links. Wait a minute. Space magnet therapy. That sounds interesting – anything that involves space has got to be cutting edge, right? Microwaves – wait, you thought they were bad for you, but maybe not when you have cancer.
And then you keep scrolling and get to the most unbelievable part – natural cures that guarantee success without a single side effect. “Whole” foods to cure cancer; “earthy” recipes to banish recurrence; exotic herbs to stimulate the body; super vitamins to mend its weaknesses.
Another page boasts “exclusive”, patented salves to expel the cancer, divine balms to coax it out, gels to soothe cancer, and patches to suck it out. There are countless glowing testimonials from countless satisfied customers, every one of them looking happy and fit, with intact hair and healthy skin. These people say they are a living testament to the power of natural therapies so why didn’t the oncologist mention any of this? Why not give people the option of going natural when the alternative is harsh chemicals that wreak havoc on the system? Your head hurts from all this information but as your newest Facebook supporters exhort, what’s the harm in giving natural things a try? It’s not like the oncologist or chemotherapy are going anywhere.
Srivastava is correct that this is often the chain of thought that leads a patient to quackery, but I do have one quibble. My experience is that there has to be something else to entice a cancer patient down this pathway. There has to be, at the very least, a distrust of conventional medicine strong enough to make some of the obviously dubious claims peddled by cancer quacks sound more compelling, perhaps sufficiently compelling to give "going natural" a try. Desperation and fear alone can be enough for a patient to refuse treatment or deny that he has cancer, but for a patient to embrace cancer quackery usually requires something more, something that helps to turn off their critical thinking abilities and fail to see through the obvious scams. One also can't discount the power of peer pressure. Time and time again, cancer patients have told me how family and friends give unsolicited advice. Most of the time (in breast cancer at least) the advice comes in the form of urging more surgery (as in bilateral mastectomies when not necessary, a tale I heard from a patient just yesterday) under the mistaken idea that more surgery will improve survival. However, there are also peer groups who provide advice urging alternative cancer treatments. I've heard patients tell me this many times as well, with well-meaning family or friends telling them of the latest "natural cure" that they really must try. Enough pressure like this can influence even strong personalities.
Enter the con artist, which Gibson mimicked:
Delusional? Or knowingly unethical and predatory? I am not a psychiatrist and if Gibson has a mental health issue I hope she gets treatment. But from the vantage of an oncologist, Gibson has mimicked on a large scale what countless other fakes do and they aren’t delusional. They have the measure of their customer: a desperate cancer patient who will grasp at any straw at any price because the will to live is inexhaustible.
Gibson’s public excoriation did nothing to temper her enthusiasm for peddling cures. No reflection on the damage she wreaked on vulnerable people. No self-imposed exile from being a wellness guru to her admiring followers. No, she simply moved on to Facebook under a pseudonym and continued to champion worm-releasing enemas, iris-altering tinctures, and tonsil-shrinking teas. While many people shake their head at this nonsense, she is not short of admirers who hold her in even higher estimation as a rebuke to the naysayers.
Us against them. Appeals to tribalism are very, very effective. It's not clear to me whether Gibson really was delusional. I suppose it's possible. However, it strikes me as more likely that she discovered somehow just how much people like the message she is selling and then later discovered how lucrative selling that message could be. In some ways, if she were delusional it would help explain her effectiveness selling quackery. I always fear true believers more than grifters. It's one reason why, for instance, Stanislaw Burzynski's patients are so effective in promoting his antineoplastons. Whether or not Gibson was delusional is less important than the simple fact that most people peddling the same quackery that she peddled are not. They know how to take advantage of desperation, something Gibson learned and mastered, whatever her motivation really was.
I do agree with Srivastava that we need to find treatments for various cancers that are less toxic and more effective, because fear of chemotherapy and other cancer treatments is very, very real. Some of it is a bit outdated, based on experiences of loved ones patients might have observed decades ago, when antinausea and supportive care measures were much less effective than they are now. Chemotherapy can be surprisingly benign in many cases now. On the other hand, there is no doubt that, even today, chemotherapy is often rough. Unless we can find really powerful targeted therapies, chemotherapy will always be rough. Also, for many cancers, surgery will still always be part of the treatment, and sometimes that surgery will be disfiguring. Cancer is a tough collection of diseases, and treatments for cancer will for the foreseeable future remain unpleasant, even painful. Unfortunately, as long as there are even minor side effects, the promise of a cure with no side effects will remain appealing. We can, however, make it less so.
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Con artist or delusional?
Why not both?
The oncologist and chemotherapy aren’t going anywhere, but the cancer is going somewhere. The time a cancer patient wastes dawdling with ineffective treatments is time for their cancer to grow and metastasize. It’s precisely this sort of thinking that killed my mother last year. I was, unfortunately, unable to dissuade her from going for alternative medicine after having a mastectomy in early 2013. She refused the adjuvant chemotherapy her physician recommended and spent the next couple of years wasting money on alternative medicine, only to capitulate when the pain from her spine metastases got so bad, and by then it was already too late. She passed away around the middle of last year at only 64 years of age.
Orac, keep fighting the good fight. The more of these charlatans you expose like the ones who misled my mother the better. Your work here saves lives every bit as much as your work as a physician. I only wish I had known of you four years ago when all this began.
This I was unaware of.
To be a successful con-artist, it helps to have a degree of sociopath in one's personality.
My thoughts exactly Guy.
A literal example of what is known as "survivor bias".
At least at first, Ms. Gibson was not delusional. Perhaps at some point she fell for her own con, but she knew what she was doing.
The general point is that cancer patients and their families sometimes get desperate, and latch onto someone who is telling them what they want to hear. The details vary, but Ms. Gibson and Stanislaw Burzynski have essentially the same modus operandi.
And Gerson and Clement and ....
I'm not quite clear how she could be seen as delusional. Is the delusion that she thought she had brain cancer but didn't? Having brain cancer yes or no seems a pretty clear cut question. She would at least have to have a basis to believe it before making the claim.
In the summary sidebar of the Wikipedia article on her, the last item in the list of her occupations is "scammer".
Under different aliases, she was promoting the MasterFast System "which claims to help people 'without hope' who 'have been given a death sentence' by healing the body.
In the closed MFS Facebook group, the former blogger apparently said the diet has helped her lose four kilos — along with some more far-fetched 'benefits' including healing tooth cavities, and changing her eye colour."
"I felt incredible all day. I hadn't felt like this in my entire life. I'm not getting carried away with the 'hype' or lost in the moment, it truly was a day like none I have ever experienced", she wrote according to the Mail.
http://honey.nine.com.au/2017/03/14/09/43/belle-gibson-new-diet
One very weird thing that I have recently learned from sources like this blog is that a surprising number of people diagnose themselves with cancer (or anything really) or have themselves diagnosed by means of anything from iridology to hair analysis (or maybe I should say hair analysis to foot baths). They then cure themselves with whatever oddball cure goes with foot baths.
Of course this goes with all the imaginary diseases like intestinal plague and chronic Lyme disease as well. I'm not sure which is more odious--taking money to cure someone of an imaginary disease, or taking money to cure someone of an imagined real disease.
She definitely strikes me as much more of a scammer than as somebody who's delusional.
Not to play armchair psychiatrist, but I do have a lot of experience with delusions - if she were truly delusional, it's almost a sure thing that she'd have some seriously disordered behavior in other areas of her life and wouldn't be able to pull off such a scam. I know I couldn't have when I was in the depths of insanity.
Christine Rose: I'd say both are pretty odious if the said treatments put the patient at risk.
One of my former students gave a presentation on chronic Lyme disease in my class (ignoring my explicit instructions NOT to bring pseudoscience into my classroom--I was livid). Her brother got diagnosed with this by some quack, has a port-a-cath and gets regular infustions of IV antibiotics.
So his health was put at risk by an invasive surgical procedure that was totally unnecessary, but he also is risking acquiring antibiotic bacteria. Heaven help him if he gets an infection in that port-a-cath. The tip of it sits right outside the right atrium of his heart.
That's pretty odious. Whether the disease is imagined or an imagined real* disease is just semantics.
*note that chronic Lyme is a contentious diagnosis.
Every once in a while, at a family gathering of my SO's family some elder relative will say something to me like "chemo kills more people than cancer". (This isn't a total non sequitur, I work in the cancer field.)
And I'll politely say "That isn't true, and chemo has gotten a lot more targeted over the past twenty years."
And they'll tell me I'm wrong because great uncle Herbert died of cancer some time in the 60's (and the cancer type is never specified).
This drives me crazy because I can't ever win this argument. It's a social situation, so I don't have citations on hand (not that most of them would actually read them), and I have no idea who they are talking about, and I have to be polite, because they are an elder relative and I'm the newbie.
How can you educate people (at least enough to head them off from serious scammers) if they refuse to listen?
Having watched Gibson's rise and crash and burn and her subsequent activities, I do think she is a bit of both. I think she is delusional in the sense that she convinces herself that her ideas are true. But in reality she is just a scammer like all the others.
She is different to Burzynski in that Stan knows he is offering worthless cures and for Stan it is all about the money, raking it in as fast as he can and using his patients as a person shield against the medical authorities. For Belle, it was different. It had less to do with the money (although she promptly banked that) and more to do with the adulation. Belle wanted to be a rock star.
She still wants to be a rock star. Her promotion of the MasterFast diet system, which I mentioned some time ago on these pages, shows that she is willing to have another tilt. Again she is delusional in thinking that people won't see through the eye colour change nonsense, but says it anyway.
On a personal basis, I want to emphasize the peer pressure component of cancer treatment. Having just been given the all clear for the next 6 months, I can reliably state that surgery alone has removed my cancer and I haven't required any other treatment. But that was because it was found early (through regular testing) and excised while it was still small. My surgeon said to me after the first operation that I was lucky. I responded to him that you make your own luck. And I meant that.
When the test first came back positive, I accepted the likely result was a malignancy (there is a bit of family history here), so didn't dither around and had the exploratory surgery immediately. A net result of this activity is that my surgeon recommended a slightly more risky course of no further treatment - even though there was a 10% chance of recurrence, provided I did regular check ups.
I don't recommend the approach I used to others, because the reason for doing that depended on a combination of the stage of the cancer and my response to it. But the free advice I get from 'well meaning' friends and acquaintances about what treatment I should follow! I have had to say to ask one person to stop discussing my cancer. Before I ram some of their recommendations down their throat. Sadly this person really believes that what they are suggesting really works. It is very similar to what Belle Gibson was promoting. I fear for the time that they or any member of their family gets a cancer diagnosis.
Dr Srivastava is an Australian oncologist, which I point out only so I can share my brush with relative fame. I work at the same hospital, and was rather starstruck when she consulted on one of my team's patients a few months back!
Anonymous Coward@2
I'm sorry your mother suffered, and that she wouldn't listen.
My family doesn't listen to me either; I'm lucky that, so far, none have serious illness.
Australia has Belle Gibson and now we have this crazy guy here in New Zealand!
http://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=11834818
Google Te Kiri Gold for more. It's been quite a media storm this weekend.
NZ Septic
"leads you down the garden path".
Hah! Seldom was a truer word spoken by a journalist.
I agree! This crazy man is luring goodness how many, down his nutty garden path. We have to appreciate the good work our media is doing!
The Australian vegan scene deserves a mention in all this too. Belle wasn't and most of these quack characters aren't big players in the Facebook scene but the culture is the same across social media.
The first wave get into veganism because they've seen an animal rights film and are immediately bombarded by well meaning family and friends terrified they're going to catch some horrific deficiency and become super sick. In actual fact, of course the science doesn't demonstrate a huge difference between carnists who keep within the recommended "three serves a week or less" and vegans but there's definitely an argument to be made that it's easier for vegetarians and vegans specifically to have a healthy diet and on average we have less fat in our diet and a healthier weight..
So but instead the vegans decide to "fight back" by constantly circulating exaggerated and grand claims based on very marginal statistical effects and of course many junk food treats have animal proteins or fats in them and are set aside during the change. So people lose a bit of weight or generally feel better and tell their friends.
The second wave joins up looking for the magic health benefits.
The "can't we all just get along" vibe is strong so the general consensus is that you're more of a jerk by arguing with someone who says pseudoscience than the guy saying it was.
And the guy who doesn't immediately feel better after changing his diet is bombarded with well meaning advice from people about what they ate when they changed their diet.
So people build up the habit of looking to other vegans for health advice. "What can I use instead of honey in my lemon honey" quickly becomes "what's a natural antidepressant" and before you know it mothers with mastitis whose flow has stopped are being advised to formulate their own replacement which is fine if the person is smart and had access to high quality information about macro and micro nutrients and also to the ingredients themselves and then doesn't make a single dumb arithmetic error, but you do from time to time get some idiot thinking rice milk tastes like mum's milk so it must be the same, right?
So the leap from "people who eat lots of purple tend to have lower risk of developing any cancer" to "this juice recipe will cure cancer" isn't far away in this environment.
With regard to "delusional", I would second what JP said @12.
Gibson is/was a scammer, not someone who is/was delusional. Lying to your self, if that is what she was doing, is something else again and lying to others is the mark of a scammer.
From the link NZ Skeptic posted -
What is it with quacks and bleach?
Some people are alive only because it's illegal to kill them.
I wonder how long until one of the Drinking Moms tries this to cure Autism.
Since when is water made up of electricity?
Teh NWOR seems to be an "Electric Universe" aficionado; perhaps she can make an Xtranormal video to explain.
Electrolysis can be used in converting nacl to sodium hypoclorite if the anode and cathode are not separated by a salt bridge or suitable membrane.
"Some people are alive only because it’s illegal to kill them."
Burzynski springs to mind.
I have been told that when life gives me lemons I should make lemonade. Life keeps giving me eedjits and barmpots but the law frowns upon putting them in the juicer.
I recently came across another Australian con-artist up there in banana-bender territory, one Anni Diamond -- Cancer Diva, Wellness Diva, "Certified Holistic Cancer Educator", Transformational Success Coach, Cancer Guide, motivational speaker, "Dancer with Disease", and organiser of the 2016 Scamfest Grifter Jamboree "Cancer Summit".
https://moregoldcoast.com.au/event/bulletproof-disease-cancer-summit/#r…
Sells parasite zappers, ionising underpants and "GcMAFplus" skin-cream.
Queensland is the Florida of Australia.
Ranjana Srivastava responded to a judge's comments about possible delusion. I think they are a legal thing - the offense is much more serious if it was deliberate rather than arising from delusion, and the regulator had not presented any evidence to address whether she was intentionally fraudulent about the cancer or delusional.
“It’s just made of salt water and electricity – there are not many ingredients in it but it’s the way it’s made.”
Vern experimented on his cows first then his grandkids.
There is a "Powerlight Dubai" snake-oil being promoted as a cancer cure in Germany and Austria -- made by passing electricity through a saline solution to break up the rigid molecular structure and make it smell of chlorine. I wonder if Vern discovered the same magical thinking independently, or read about it on some conspiracy website.
Maybe not, if Srivastava's narrative of typical response to diagnosis is accurate. I'm thinking of a non-wooey friend who was told he had a terminal cancer circa 1992, and was on the verge of going to laetrile even though he thought it was bogus because of 'what do I have to lose, so maybe me and everyone else are wrong and it does help a few people' or something like that.
He had too much faith in conventional medicine – that is, he thought his first oncologist (in Amhearst, MA) was expert and at first didn't seek a second opinion about his cancer's no-treatment status. However, when he was in Boston for a conference he decided, on a lark, to get seen at Mass General. The oncologist there told him the Amhearst doc was way behind the curve, and his cancer was actually quite operable, and in fact he could cut my friend the next week. Needless to say, that was the end of laetrile idea.
So if "all you can hear in your ears is the din of, 'I will die'," you'd be, at least for that moment, like my friend, ready to grasp at the most improbable straws for the smallest chance of life. Maybe, once that gets in your head, it never really goes away, even when you come to understand the realities of chemo and radiation etc. etc. ????
I'm not saying this true for everyone who opts for natural cures, and obviously "distrust of conventional medicine" moves the needle a lot...
... on a bit of tangent: When we talk about "distrust of conventional medicine" I think we should distinguish between 'distrust of medical science' and 'distrust of its administration by professionals and institutions' if for no other reason than the two are likely to get conflated in the public mind. But even when they don't, the latter can be a problem with patient acceptance of necessary treatments, and once that 'better education in science' or 'the facts' can't ameliorate.
Sadmar @32: The whole "all you can hear is I will die" is a reason that I've seen advice floating around that if you have to go in for a potentially scary doctor's appointment you should take a trusted friend (someone who won't also freak out) or at least record the appointment because you won't actually hear anything at the time.
I've actually wondered if oncologists have done research on the best way to deliver a diagnosis so that the patient really hears it. Audio recording? Printed transcript? A card that says in giant font "This is not the end"?
It would be a good place for collaborative studies with social workers.
Thank you Orac. The only thing that sucks worse than cancer, is listening to Google geniuses display their breathtaking ignorance of science and medicine, while dispensing what they think is valuable advice, and somehow not taking out all that free-floating cancer diagnosis rage upon them. There are people who are alive today only because I do not wish to go to prison.
You should know bimler that NaCl is completely dissociated in water an therefor not molecular, it’s ionic: Na⁺ + Cl⁻
This is a useful explanation but the hard part is delivering it to the water-energiser scammers.
Edward Bernays, father of Propaganda said "We are governed, our minds are molded, our tastes formed, our ideas suggested, largely by men we have never heard of."
Think robber barons from early 1900's that established the petrochemical medical trust and funded only allopathic medical schools to teach the current poison, burn and cut approach to cancer treatment. Chemotheraphy and radiation are carcinogens. NYC major cancer center got funding from the same medical trusts who used their tax exempt foundations to change the medical school curriculum (see Flexner Report). Doctors are taught medical arrogance and superiority. If their approach was so good why aren't all cancer patients "healed"?
I know these doctors feel that nutrition plays no part in a persons health. Why would they know anything about nutrition, it isn't covered or is barely covered in medical school so the idea that nature holds the Cures to all our ailments isn't something they were taught. Besides the fact that if they actually cure their patients they would put themselves out of business so they have to but into the perpetual "treatment" as long as they can manage to keep their patients alive giving them these poisonous treatments.
Their approach to healthcare is $elf $erving-its all about the money. They criticize anything that doesn't fit their model because they think they are God and know better than God. God provided a means to stay healthy- good nutrition with unaltered natural food, good gut bacteria, and a healthy immune system.
If the doctors dispute the role nutrition plays in their overall health I would invite them to stop eating and see how long they last with their pharma substitute and look at the quality of their life. God wasn't an amateur, he knew what he was doing-its the allopathic doctors that are screwing up people's health. What's it called, iatrogenic (relating to illness caused by medical examination or treatment.)
Why do you think they had to make it illegal to treat diseases with anything other than petrochemical drugs? They're eliminating their competition, because the natural method actually heals people. Funny how many studies big pharma dies on natural herbs and spices to see how they work so they can create a synthetic patentable version to add to their profit center. B17-Laetrile was studied by that NYC cancer centers own scientist and found beneficial and then they discredited their own scientist. Search Second Opinion https://www.youtube.com/watch?v=nGXzLuxwqQs