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The price of cancer quackery

I don’t have much to add to this one, as it’s a tragic tale. Shadowfax, a blogging ER doc, relates to us what happens when cancer patients rely on quackery like the Gerson protocol instead of scientific medicine:

This was a young woman, barely out of her teens, who presented with a tumor in her distal femur, by the knee. This was not a new diagnosis — it had first been noted in January or so, and diagnosed as a Primary B-Cell Lymphoma. By now, the tumor was absolutely huge, and she came to the ER in agonizing pain. Her physical exam was just amazing. The poor thing’s knee (or more precisely, the area just above the knee) was entirely consumed by this massive, hard, immobile mass about the size of a soccer ball. She could not move the knee; it was frozen in a mid-flexed position. She hadn’t been able to walk for months. The lower leg was swollen and red due to blood clots, and the worst of the pain she was having seemed due to compression of the nerves passing behind the knee. It was like something you see out of the third world, or historic medical textbooks. I have never seen its like before.

So we got her pain managed, of course, and I sat down to talk to her and her family.


Why had this tumor been allowed to grow so large and painful? If you’re a regular reader of SBM, I bet you know the answer. This patient had been relying on quackery (in this case, the Gerson protocol, immortalized in the quackery propaganda movie The Beautiful Truth):

In a less grave situation I might have laughed and asked “So how’s that working for ya?” As it was, the tears from her only partially-controlled pain took any humor out of the situation. She was very frustrated that the Gerson therapy wasn’t working yet, but she did not perceive this as a failure of the treatment. Her theory was that the severity of her uncontrolled pain was keeping her immune system suppressed and preventing it from working. If, she hoped, she could just get her pain under control, she would finally start to get better.

I spent a lot of time with this young lady. Listening as well as explaining. She was dead set against chemo, which to her mind was equated with the “toxins” which had caused her cancer in the first place. She wrote off the oncologists as pushing chemo “because that’s all they know how to do, and it never works.” She had, in fact, burnt all the bridges with the various oncologists who had treated her, and was now left with only a pain specialist and a primary care doctor trying to do what little they could for her. She was equally frustrated by doctors in general, who “won’t do anything to help me.”

I could see why she felt that way; when a patient refuses the only possible effective treatment, there is not really much we can do to help her.

All too true. The cliche goes that you can lead a horse to water but you can’t make him drink. This is true for every patient; we can’t force our therapies on a mentally competent adult patient. People have the right to make their own choices and to suffer the consequences when their choices are poor.

Just like this woman.

The person primarily at fault is the quack prescribing the treatment, taking advantage of this woman’s fear of chemotherapy. After relating how he arranged for this patient to see another oncologist, who was willing to try to help her despite her baggage and extreme distrust of “conventional” medicine, Shadowfax concludes:

Most woo is harmless — but that’s because most woo is directed at chronic, ill-defined, or otherwise incurable conditions. Think chronic fatigue or fibromyalgia. Wave a magnet at somebody, get them to do a lot of enemas and go on a special diet, and you get to write a book and go on Oprah and collect a lot of money. If the subjects of the “magical thinking medicine” think they are better from the intervention, then so much the better.

But the really pernicious thing about allowing fantasy medical theories and treatments into the mainstream is that when they gain enough credence among the masses, they will tend to be used in place of real medical treatments that work.

Exactly. What’s worse is that, the more woo infiltrates scientific medicine, as it is doing, the harder it is to tell woo from non-woo. Then we ostensibly “science-based” practitioners become the quacks who are only marginally better than the quack who indulges the delusions of a young woman with a potentially curable cancer and thereby leads her into a path of extreme suffering and likely death. I’ve seen it before myself.

I’ve even blogged about it before–and more than once.

Posted in: Cancer, Health Fraud, Medical Ethics

Leave a Comment (16) ↓

16 thoughts on “The price of cancer quackery

  1. OldGene says:

    Just how many more people are going to suffer before we get mad enough to actually do something about this once and for all?

    I’m furious at this. This is a failure in many areas.

    First, just what kind of schooling leaves people with so little knowledge and ability to think for themselves, clearly and critically they are vulnerable to twaddle.
    Second, where were the friends and family of this girl as this tumour grew and grew? Weren’t they deeply concerned at her beliefs?
    Third, at what point are these twaddle-pushers going to be held legally accountable?

    I’m not a medic, so can someone explain to me why a twaddle pusher can create such a disaster?
    If this girl was being treated by an oncologist who was just as incompetent and failed to provide appropriate, effective treatment where available, would the oncologist be held to account? Wouldn’t the lawyers sharpen their pencils? Well, why not with the twaddle pushers? I understand she can’t be forced to accept treatment, but isn’t there anything that can be done when the reasons for refusal are so wrong?

    How bad does it have to get? Are there any good studies demonstrating the damage that results from twaddle?

    Obviously, I’m pretty furious…

  2. PerceptiveLife says:

    As I read this article the one thing that I saw as a positive is that the Dr states that he spent a lot of time with this patient, which is unusual in what we call ‘Health Care’. As sad as it is that this young girl suffered with such an unforgiving illness, I can say personally that I highly value my right to choose the treatment that I receive when faced with illness.
    We have made some amazing strides with science and medicine but we still have gaping holes.
    Each side steps out of the way of their ego and looses sight of the patient. They are human beings with families. The best that you can do is give them their options and your opinions based on your experience and science (numbers that can be manipulated either way). At one point in history science told us the world was flat and I wouldn’t be shocked if some time in my life research finds better ways to treat cancer without chemo and radiation.
    I have had the honor and the sorrow to help family members and clients through the scary maze of cancer. Some survived, some didn’t but their right to choose gave peace, dignity, and control at a time in their lives where all three are in short supply.

    So I’m furious when people other than myself feel it necessary to take control of my choices instead of focusing on their own choices!

  3. MBoaz says:

    Truly pathetic. Let’s hope this poor girl comes to her senses before she finds herself in contention for a Darwin Award.

  4. Harriet Hall says:

    People complain about Big Pharma, but Big Pharma could never get a drug on the market based on the kind of “evidence” available for the Gerson protocol.

    The thing that really made me mad was that everyone could see she was getting worse yet they talked her into believing that if her pain could be controlled the treatment would still work. Total denial and inconceivable cruelty.

    This is why we write this blog. It is sometimes difficult to see the connection between a “harmless” treatment like homeopathy or acupuncture for the worried well and a horror story like this one. But if people could think more clearly about how to tell if any medical treatment worked better than placebo, the horror stories wouldn’t happen.

  5. David Gorski says:

    At one point in history science told us the world was flat and I wouldn’t be shocked if some time in my life research finds better ways to treat cancer without chemo and radiation.

    This is known as the “science was wrong before” fallacy.

    I think that Skeptico and John Jackson explained best why this gambit is bogus (word choice intentional). Basically, science is a process that results in a series of provisional truths, backed by evidence and experimentation, that are amended when new evidence shows that they need to be amended. Over time, science gets closer to an accurate description of how a phenomenon works. Quackery and pseudoscience, on the other hand, reject the scientific method and look for evidence to support the beliefs underlying them.

    There’s also the matter that there are multiple ways of being wrong. I think John Jackson put it the best:

    What we need to understand is that we can be wrong to varying degrees. Let’s say a man has robbed a shop and police ask witnesses for the robber’s height. They could get answers such as 5′ 10″, 6′ 0″, and 1′ 8″. If the robber was 5’11″ they are all technically speaking wrong; but the police chief who doesn’t understand that there are degrees of being wrong will not stand much chance of catching his man if he sends his force out looking for a 20-inch armed-robber.

    There are many complex areas of inquiry and finding answers is not easy. Initial ideas and hypotheses may be quite wrong; however, where they are shown to be wrong, they will be amended and retested. In this process, what happens is that an absolutely true answer may not be found, but we get closer to what is true every step of the way by being less wrong than before.

    By rejecting theories and hypotheses that can be shown to be false and replacing them with others that stand up to attempts to prove them wrong (Note: not attempts to prove them right. See: confirmation bias fallacy), we can accept them as being provisionally true. Truth, by definition, could never be shown to be wrong. This is why a scientific theory that cannot currently be shown to be wrong is accepted as provisionally true.

    To argue that science can’t prove things to be 100% true is fine, but for people to use it as an argument to give validity to completely untenable ideas is fallacious. Both their ideas and science may be wrong; but science is highly likely to be far less wrong than they are.

    I’d put it even more succinctly: Just because science has been wrong before does not mean Gerson was right–or that the quack taking advantage of this woman’s fear and delusions in order to sell her snake oil is right. Nor is the expectation that science will advance and eventually find treatments that are less toxic and more effective for cancer a particularly sound rationale for foregoing the best science has to offer now. That’s trading a known effective therapy for fairy dust.

    Science is far more likely to be right than Gerson. Let’s put it this way: The provisional truths of science have evidence supporting them. If you think a conclusion of science is wrong, then you have to provide evidence sufficient to make scientists start to wonder if their understanding is wrong. My usual example is homeopathy, which goes against so many tenets of so many branches of science that for it to be true much of what we consider to be well-established principles about physics, chemistry, and physiology would have to be seriously wrong. To make me think that there might be something to homeopathy would require a quantity of evidence that’s at least in the same order of magnitude in terms of quantity and quality as the evidence that shows that homeopathy cannot work. Yet, if such studies were ever produced in sufficient quality and quantity, I would start to change my mind about homeopathy. Crappy studies showing an effect barely greater than that of a placebo that is probably due to either bias or random chance, however, do not qualify as being sufficient to start that process. Although the Gerson therapy is not as outrageously implausible as homeopathy, it, too, requires much of the well established medical science regarding oncology be not just wrong, but outrageously wrong, as a basis for the very core claims underlying it.

    In other words, the odds that Gerson is right and science is wrong on this one are astronomically against Gerson. Of course, I could be proven wrong. Gerson advocates could produce patients with cancer that medical science can’t cure and show some undeniable, unequivocal cures in the form of long term survivors whose survival can’t be accounted for in any other way.

    In the meantime, I’ll take scientific medicine.

    So I’m furious when people other than myself feel it necessary to take control of my choices instead of focusing on their own choices!

    Who said anything about “taking control of your choices”? What we are discussing here is health fraud, plain and simple, not any issue of “health freedom,” which is in reality the freedom for quacks to prey upon the unwitting. Do laws against financial fraud or other forms of fraud “limit” your choices? Perhaps they do, but we as a society find taking advantage of others through fraud to be a morally repugnant act worthy of being made illegal.

  6. OldGene says:

    PerceptiveLife
    You are entitled to make your own choices. Obviously. Adults, who have that right would normally make those choices after examining the facts. There is a world of difference between making an informed choice based on the available evidence with the help of professionals and a choice based on myths, fantasy and downright lies.
    People can be jailed for financial fraud, but to convince someone that a useless treatment/method for which there is no evidence is better than proven treatments (even when they have a life threatening condition) is somehow different? Why science myths are not considered to be fraud? Surely, health, indeed life, is more precious and worthy of the law than money.
    Pandering to nonsense isn’t appropriate, not when lives are being damaged and lost.

  7. Tsuken says:

    … That is too, too tragic. :(

    As a psychiatrist, I at times do get placed in the position of controlling someone’s choices (not in relation to physical health, generally). I can report it is ethically unpleasant, and to be honest, in many or most cases produces less-than stellar medium to long-term outcomes, despite the immediate benefit. People do make choices: sometimes they are bad ones. As has been said, the horror here is the fraud that influenced this young woman’s choice, and the dreadful consequence.

    I think (sadly, for my specialty) that psychiatry is probably even more vulnerable to various types of woo than the rest of medicine, because our hard science is lagging behind (though there’s a lot of catching up happening). As a result, it seems easier for us shrinks to get flaky around the edges (or at times all the way through, like a psychiatrist I worked with in the past who was full-on into energy therapies). I’ve seen this recently in an invitation put out by our health service’s own “Mental Health Sciences Centre” to a “dialogue with” a champion of “Integrative Medicine” from the Bravewell Collaboration. I was asked to circulate information about the evening, and did so – but accompanied by a rather scathing attack on its appropriateness. I haven’t been approached for a flyer yet ;-)

    Just a final shrink’s note: the end result of forgoing real treatment for woo in psychiatry can be just as dire as in other branches of medicine; the only difference is that the morbidity and mortality can result by the patient’s own hand, rather than by microbes or cancer cells. The tragedy is the same.

  8. Basiorana says:

    “I wouldn’t be shocked if some time in my life research finds better ways to treat cancer without chemo and radiation.”

    Wait, this confuses me. No one thinks that chemo and radiation are the end of cancer research. Billions of dollars are invested every year into finding safer and more effective means of fighting cancer.

    But that doesn’t mean that they don’t work for a lot of patients, and help more often than they hurt; it doesn’t mean we should avoid them. Quinine was very effective at preventing malaria, after all; it enabled the colonization of Africa. Yet it has been all but replaced as a prophylactic by modern drugs like quinocrine, chloroquine, and primaquine because quinine has nasty side effects. Yet if our ancestors traveling in Africa had known that in 100 years there would be a far safer and pleasant alternative to quinine, they would hardly have thought that reason not to take the quinine. Something is better than nothing, after all. And that’s a prophylactic– it’s even more reasonable that a person would chose a drug that they don’t take until the disease has already attacked them.

  9. pmoran says:

    This kind of case makes me wonder if our message about cancer quackery should be simpler, more precise and targeted to the main areas where it causes harm. That could be “‘alternative’ methods never, ever make established cancer go away.”

    “They don’t work” allows the quacks too much leeway with the meaning of “works” (“look at all these people who are happy with what we have done for them”).

    “There is no evidence that ——-” is loose science-speak and evokes a torrent of low-quality “evidence” in the form of testimonials that invariably don’t actually show established cancer going away.

    Most importantly, it challenges the quack (an entirely appropriate term for this group of villains and crackpots) to produce cases where definitely proven active cancer actually did go away with the sole use of their methods. They cannot do it.

    Truly complementary use of quack cancer methods is less of a problem, and not being bothered about trying to pee too much into that wind may enkance the credibility of the big message.

  10. Mojo says:

    @PerceptiveLife:

    At one point in history science told us the world was flat

    As David Gorski points out above, this is irrelevant, but it’s also not true.

  11. bwmbagus says:

    This is such an important subject which impinges on my own concern. I have secondary progressive MS and have reached point where I am told I have no therapies left.
    There is a plethora of alternatives jokers out there trying to prey on my need. However, I use a branded off label therapy to control my MS called Low Dose Naltrexone which makes me one of those people who has researched and chosen my own route.
    Luckily, LDN is effective because the human body is effective at controlling diseases like MS and cancers etc when it is healthy.
    But the fear caused by such dramatic cases of stupidity as the one reported here is waht drives our reluctance to look at effective out of patent branded drugs, even when there has accumulated tens of thousands of individuals providing their prescribing doctors with clinical evidence of effect.
    Let’s stop dumping the baby with the bath water now, and take a good look at the unprofitable but promising therapies, even if they affect the market in high tech drugs.
    Interestingly, I was offered Mitoxantrone, which is risky, expensive and off label too. Why am I only offered expensive off label therapies? And, at least the trials for Naltrexone show that LDN is safe to use, even for a pregnant mother.
    I can report that the ‘placebo’ effect is working spectacularly. I can walk with sticks now. It also seems to have worked for the majority of the 500 or so people I know presonally who use it too. Better than the 30% placebo effect too, so that sort of questions that point.
    The hardest thing a low cost drug can manage to do is get itself trialled. Time to change that when we face escalating and crippling drug bdgets in the NHS – don’t you agree?

  12. Joe says:

    @pmoran on 09 Sep 2009 at 3:44 am

    For what it is worth (I am not a doctor), I like your ideas. For example, I quit saying “there is no evidence” in favor of “there is no reliable evidence” a long time ago; but that leads to quacks saying that I am closed-minded about what is reliable … Maybe that is too fine a distinction for the public.

    I am concerned that your claim that “‘alternative’ methods never, ever make established cancer go away” could be compromised by coincidental, spontaneous remission; which could embarrass the speaker on rare occasions. The difference between “diagnosed” and “established” may be too subtle (assuming that I understand the distinction). Again, I don’t think the public appreciate the fine distinctions. Nonetheless, I like your forthright presentation.

    You wrote “Most importantly, it challenges the quack … to produce cases where definitely proven active cancer actually did go away with the sole use of their methods. They cannot do it.”

    “Cases” are anecdotes”- and they abound.

  13. Zetetic says:

    How is it that deviation from the “Standard of Care” by a licensed health care provider can lead to a lawsuit while alt-med “providers” can do this to a patient, have no standards or guidelines and can get away with anything?!

  14. pmoran says:

    Joe: You wrote “Most importantly, it challenges the quack … to produce cases where definitely proven active cancer actually did go away with the sole use of their methods. They cannot do it.”

    “Cases” are anecdotes”- and they abound”

    True. Anecdote in the form of testimonial of typically abysmal quality sustains the whole “alternative” cancer industry, yet we skeptics rarely challenge it head on. After our learned dissertations on the theories and “what the studies show” and don’t show, it still sits out there, causing uncertainty and confusion and false hopes.

    In fact, dismissing testimonial as “just anecdote” is possibly the worst thing we can do, even when it is clearly worthless. To those unfamiliar with scientific modes of thought this can look very much like a convenient device for maintaining personal bias and “refusing to look at the evidence”.

    It is also not scientifically sound. Anecdotal experiences have been the evidential trigger for numerous important advances in medicine

    And cancer is a special case. Most types and stages of cancer are very predictable, so much so, that a mere handful of well-documented remissions could be powerful evidence of a treatment effect.

    We should be drumming home that not one “alternative” cancer plan is able to produce quality material even though they treat hundreds of cases with obvious cancers yearly and lead them all to believe that cure is possible.

    So I think we also should do more explaining as to why testimonial does not show what it is supposed to show. I believe that is possible in just about every case, but it unfortunately does require some knowledge of cancer diagnosis, staging, behavior and its response to treatments. David Gorski has written some pieces along those lines but there should be more of it, and more prominently, too.

    It would be good if some journalists looked at this. Diagaman?

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