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.