No doubt you’ve come across them before, either on the Internet, printed advertisements, or radio and TV ads: Alternative medicine cancer “testimonials.” They are the primary means by which “alternative” therapies for cancer (or just about any other disease) are promoted and the primary “evidence” that is used to “prove” the efficacy of non-evidence-based therapies. There’s no doubt that they sure can sound convincing. Typically, what you will see or hear is a chipper-looking and -sounding person who claims that this treatment “cured” his or her cancer. These testimonials almost always include many or all of these elements: First, the cancer patient receives the diagnosis, after which she is lost and suffering at the hands of “conventional” doctors, who either cannot or do not wish to understand and who cannot do anything for her. Often, this will take the form of the classic alt-med cliche that the patient was “sent home to die.” Then, when all hope seems lost, the patient discovers an alternative medicine “healer” or treatment. It is not infrequently described in quasireligious terms, like a revelation or something that brings the patient out of the darkness and into the light. Naturally, there is resistance from the patient’s doctors, family, and/or friends, who warn against it, with doctors warning of dire consequences if the patient abandons conventional medicine. But the patient, convinced by dubious practitioners, friends, and, of course, previous testimonials, “sees” that the treatment “works” in a way that medical science cannot and survives. Infused with fervor, the patient now wants to spread the word. Often, the patient is now selling the remedy. Perhaps you’ve seen such testimonials or heard them on the radio and thought: “Gee, this sounds great. I wonder if it works.”
The answer is: Almost certainly not.
Let’s face it. Cancer is definitely scary. In fact, a cancer diagnosis is very, very scary thing for anyone to face, even when it is a cancer that is treatable and potentially curable. One reason is that it’s such a common type of disease that, by the time we reach a certain age, almost all of us have seen at least one friend or loved one die of it. All too often, that death is horrific, and even when it is not the wasting and weakness that are often seen before the end provokes a visceral reaction produced by few diseases. Worse, the treatments of cancer can be toxic. For solid tumors, surgery, sometimes disfiguring, is often required. Radiation therapy may be needed, or, most feared of all, chemotherapy. Contrary to what is said on many websites dedicated to “alternative” medicine, doctors do not “cut,” “burn,” and “poison” cancer patients (as proponents of unscientific treatments for cancer often characterize cancer treatments) because we enjoy it or because of failure of imagination. We use them because they are the best treatments that we currently have, and, for several common malignancies, they are quite effective. Even so, this cartoon remains a common misconception of what cancer therapies are.
Given the fear of cancer and treatments for cancer, it is not surprising that nonscientific “cures” flourish and many people, unfortunately, fall prey to them. Of course, it is not science that drives these sorts of therapies, although they are often dressed up in “science-y” sounding terminology in order to obscure what to an oncologist or cancer investigator would obviously be the extreme biological or even physical implausibility of the remedy. These treatments do not rely on randomized clinical trials or basic science to support their efficacy, either. Rather, they rely on testimonials, one of the most visible and highly abused methods of selling dubious therapies. Because it is my specialty, I will concentrate on breast cancer testimonials as a prototypical example, although many of the same principles apply to any “alternative medicine” testimonial.
Before I can explain why testimonials are generally unconvincing to anyone who knows a bit about cancer, a little terminology is in order. The treatment of breast cancer is divided into two phases, locoregional control (treatment of the disease in the breast and the axillary lymph nodes) and systemic control (prevention of distant metastases). Surgery and radiation therapy are modalities used for local control; chemotherapy and hormonal therapy, for systemic control. Adjuvant therapy is one of these modalities administered after surgery. Adjuvant radiation therapy will improve local control and lower the rate of recurrence in the breast. Adjuvant chemotherapy and hormonal therapy will improve systemic control and decrease the rate of development of metastases, which are usually what kill patients. Such adjuvant therapies are what I like to call “icing on the cake” of surgery.
The reason breast cancer testimonials sound so convincing is that most lay people don’t know a lot about the disease, particularly that surgery alone “cures” many breast cancers. Early stage cancers are cured by surgery alone more often than not, and a significant minority of patients with even large tumors and multiple positive lymph nodes still have a not insignificant chance of long term survival with surgery alone. I’ll start with a very common example. In the case of a lumpectomy, the local recurrence rate in the breast can be as high 30-40%. Radiation can reduce it to less than 10%. That means that women who forgo radiation are still more likely than not to avoid local recurrence in their breast, particularly if their tumor is small. In terms of distant metastases, which is what kills in the case of breast cancer and virtually all solid malignancies, chemotherapy and hormonal therapy improve survival. The improvement is small on an absolute basis in patients with early stage cancers but becomes more impressive with more advanced operable tumors. Because many breast cancer patients will do well with surgery alone, clinical trials with large numbers of patients are needed to find true treatment effects due to adjuvant therapies. Indeed, one of the hottest areas of cancer research is to determine molecular characteristics of tumors that will allow oncologists to differentiate women with low risk disease, who could forego chemotherapy safely, from those with high risk disease, who would be far more likely to benefit. As it is now, we give chemotherapy to the many in order to benefit the few simply because we do not know which specific women will benefit.
These facts help to explain breast cancer survivors who have undergone surgery but decided to forego chemotherapy and/or radiation therapy in favor of “alternative” medicine (Suzanne Somers, for instance). When such patients have a tumor with a good prognosis, where recurrence is uncommon or have a more advanced tumor but are lucky enough not to recur, they attribute their survival not to the primary surgery, but rather to whatever alternative therapy they have decided to take, even though it almost certainly had nothing to do with their survival. To them, it was the alternative medicine that “saved” them, not good old-fashioned surgery. In contrast, women who opt for alternative therapy and then recur obviously don’t provide good testimonials to sell alternative medicine, which is why you almost never hear about them. They’re bad for business.
Some might ask: Why do patients fall for this? It is not a matter of intelligence. In my experience, women who pursue alternative therapy are, more often than not, intelligent and/or highly educated. Instead, they do not possess sufficient scientific knowledge and/or critical thinking skills to separate truth from nonsense in medicine. Cancer and most other diseases are not something about whose therapy one can self-teach with much hope of success. However, because we all have to deal with health issues at one time or another, we all have opinions about them and, in a democratic delusion, tend to think that we can teach ourselves enough about the science of a disease to become “experts.” We don’t do this so much about, say quantum physics. Few would think that they could self-educate about particle physics enough to argue against well-supported science when it comes to particle physics, but many will do so with medicine. Unfortunately, we as physicians all too often encourage such thinking by being dismissive or not listening closely enough to the complaints of our patients.
It also seems to be a question of human nature. The diagnosis of breast cancer can be emotionally devastating. Formerly self-assured women feel themselves losing control of their lives. Unfortunately, our system of medicine reinforces this feeling of loss of control, as it is all too often impersonal and even disrespectful of patients. Patients find themselves going to multiple doctor’s visits, where all too often they have to wait for hours in crowded waiting rooms to see their doctors, who then, thanks to the demands of managed care, only spend 5 or 10 minutes with them discussing a life-threatening disease. They deal with voicemail hell trying to reach their doctor when they are having problems and endure many other indignities. They often conclude from this that the system does not respect their time or them (which it often doesn’t) and that they are considered nothing more than a number, a disease, an insurance number, or money. In contrast, “alternative” practitioners often provide the human touch that is too often missing from modern medicine. They take the time to listen to the patient and make her feel good about herself and her decision, all too often giving erroneous information about chemotherapy and radiation therapy. When a woman makes a decision to choose alternative therapy, she often sees herself as “taking control” of her treatment from uncaring doctors whose treatments, she is told, do not treat the root cause of her disease. Understandably, she may feel liberated from the tyranny of HMOs, cancer centers, clinics, and hospitals and back in control of her own destiny. In addition, many testimonials have religious overtones as well, where lost, suffering women misguided by conventional doctors and without hope find a savior (their “healer”) and/or enlightenment (the “alternative” therapy) that leads her out of the darkness and into the light of good health again. Her ignoring the reportedly dire warnings of doctors (unbelievers, apostates, infidels) is validated by her apparently excellent outcome.
That religion and spirituality should play such a large role in alternative medicine testimonials should not be surprising, given how much of alt-med is infused with New Age “spirituality” about living “energy flows” and connections with the earth. Consider, for instance, the concepts behind traditional Chinese medicine (TCM). These concepts are mostly based on a non-Christian religion (Taoism) particularly the emphasis of TCM on the need to correct “imbalances” between different kinds of spiritual “energies” in order to restore health. These concepts powerfully influence more of alt-med than just TCM. Sometimes, fundamentalist Christians, who would normally be very suspicious of such non-Christian concepts, manage find a way to infuse their brand of alt-med with their Christian religion (particularly faith-healing, which fits in well with alt-med spirituality) or to downplay inconvenient Eastern or pagan spirituality that underlies much of alt-med. (For examples of what I’m talking about check this and this out.)
Even doctors, who are trained to have the knowledge and critical thinking skills to know better, are not immune to falling under this spell. Case in point, Dr. Lorraine Day was Associate Professor of Orthopedic Surgery at UCSF and Chief of Orthopedic Surgery at San Francisco General Hospital in the 1980′s. She made a name for herself through dire warnings of AIDS spreading through aerosolized blood during trauma surgery (although, as far as I can tell from PubMed, she never published any studies in peer-reviewed journals to support her claims other than this interview). In the early 1990′s, Dr. Day developed breast cancer. Her website and this annotated transcript of one of her informercials tell her tale. In brief, in 1993 Dr. Day underwent an excisional biopsy that showed a ~2 cm breast cancer, with tumor extending to the margins. She then underwent what sounds like a re-excision lumpectomy, refusing the addition of axillary dissection, the standard of care at the time. (Axillary dissection has since been supplanted, for most breast cancer patients, by sentinel lymph node biopsy.) Dr. Day then started an alternative medicine regimen of diet manipulations and prayer. Nine months later, she developed a small “bump” near her previous site, which (she claims) grew to the size of a grapefruit in only three weeks. She even posted a picture. (I have to point out that I’ve never seen a breast cancer–recurrent or primary–even a really nasty one, that looked like this or that grew that fast. Invasive breast cancers usually start ulcerating through the skin long before they stick out and stretch the skin the way that Dr. Day’s lesion did.) The mass was, according to her, partially removed surgically, after which she was “sent home to die.”
Of course, this is not how her story ended. According to her testimonial, she “cured” herself with a regimen that included the same sorts of dietary manipulations and prayer as before. Dr. Barrett has posted a very good analysis of Dr. Day’s story and a deconstruction of her infomercial, concluding that the second operation most likely cured her and that the grapefruit-sized mass was most likely not recurrent cancer. Given that Dr. Day has refused to release the pathology report for her last operation after having released her first pathology report and only part of her second report (it’s a cancer staging form without the actual pathology report and leaves out the part that tells whether the residual cancer had been completely excised with clear margins at her second operation), I tend to agree with Dr. Barrett’s assessment. Very likely the last pathology report shows no breast cancer (in which case the second operation cured her) or a recurrent cancer that was completely excised (in which case the third operation cured her). Of course, Dr. Day could easily prove doubters wrong by releasing the the complete second report or the last pathology report, but she does not.
I mention this case to demonstrate that even highly trained and educated doctors, who should be able to evaluate alternative medicine therapies dispassionately, can become their biggest boosters. Even if Dr. Day could prove that she cured herself exactly as described on her website, I would still ask her why she never did a clinical trial to see if her result could be generalized to others, instead of using her story to sell a product called Barley Green and her books and videos. I would ask her why she didn’t hook up with basic scientists to study the constituents of Barley Green. That would be what a real academic surgeon would do. If her recovery was as miraculous as she claims, it would not take very many patients or very long at all to show the efficacy of her regimen. Unfortunately, Dr. Day appears to take a dim view of even honest criticism and is not above threatening her critics with the wrath of God. Ironically, recently Dr. Day announced that she will no longer sell Barley Green because the company that previously manufactured it was taken over by a Japanese company, which is going to supplant it with a barley product that uses “energized water.” Oddly enough, Dr. Day can believe that Barley Green and prayer saved her life, but is very skeptical about anything that even has a whiff of New Age about it.
Another aspect of testimonials is denial. There is a need to believe that the chosen “alternative” therapy is working, even when the evidence shows that it is not. One example of such a testimonial is a woman by the name of Kim Tinkham. If you read her story, it contains many of the same elements that Dr. Day’s did. There is the diagnosis, the shock, and then the seemingly brave decision to go against what three doctors recommended for her stage III breast cancer, namely a lumpectomy and axillary lymph node dissection, followed by chemotherapy and radiation, a very reasonable recommendation with a decent chance of saving her life. What’s missing are two things. First, Tinkham didn’t undergo a surgical excision of her tumor. Instead, she fell under the influence of a practitioner named Robert O. Young, who believes that in essence all disease, including cancer, is due to excess acidity and treats it all by trying to “alkalinize the blood.” Second, she spared us the cliche of her doctors “sending her home to die.” Here is one part of her testimonial, that really stands out:
She can still feel the tumor just underneath the surface of her skin, where it will probably remain for a while.
But she knows it’s harmless. Now, it’s simply her badge of honor – the reminder that she, Kim Tinkham, defeated cancer without any surgery, invasive procedures, radiation or chemotherapy.
Note that Tinkam tells us that the tumor is still there! Note also that no mention is made of whether the tumor has grown or shrunk. What is most likely going on is that Tinkham is fortunate enough to have a relatively indolent, nonaggressive tumor. It is probably slowly growing; so that in the ten months or so since her diagnosis it may not be obvious that it’s grown unless she regularly undergoes ultrasounds, mammograms, or MRIs, which would give an objective measurement of its size. So, if the tumor is still there and is not obviously shrinking, how on earth can Young tell Tinkham that her tumor is gone? Here’s how:
A recent blood test proved that the stage three breast cancer diagnosed in February is absent from her body. But she really didn’t need a blood test to tell her that. Just hours after she had her blood taken for the test, and days before she knew the results, she was confident that her new lifestyle had allowed her body to fight the cancer.
I want to emphasize right here that there is no blood test that can tell a woman that she is breast cancer free. None. Unlike PSA for prostate cancer and CEA for colorectal cancer, tumor markers for breast cancer are notoriously unreliable. Moreover, even if she did have a blood test that told her she is tumor free, if the tumor is still there, she should pay attention to the tumor, not to any dubious “blood test” that a dubious practitioner represents to her as having any validity whatsoever in determining the status of her tumor. One of the aspects of unscientific practitioners is that they often have unscientific and unvalidated blood tests or other tests that “monitor” the tumor. They then tell patients that their tumor is getting better on the basis of these tests alone, even as the evidence is that it is not. They tell the patient she is getting better (or even “cancer-free”) right up until she becomes moribund.
This testimonial also demonstrates the religious or spiritual element that is often behind so much of “alternative” medicine. I did a search on her name, and it became clear in accounts of how Oprah Winfrey had Tinkham on her show to discuss her decision to treat her breast cancer with “natural” methods that Tinkham believes in The Secret. The same sort of wishful thinking that led her to fall for nonsense such as the “Law of Attraction” has led her to fall for the science-free nonsense that Young is telling her about her cancer. The bottom line is that, to those with little knowledge of medicine, testimonials can sound convincing. However, behind them there is usually a Secret-like element of really, really wanting to believe. Moreover, even someone without much medical knowledge but with halfway decent critical thinking skills and some skepticism should be able to come up with the right question, namely: How on earth can Tinkham claim that she is cancer-free on the basis of a blood test alone when her tumor is still there? Such a person will see this testimonial for what it obviously is, and that person won’t necessarily have to be highly educated to do it.
Never forget that alternative medicine testimonials exist largely for one purpose: To sell a product. Most of them are advertisements, nothing more. They are no more “unbiased” than pharmaceutical advertisements for their latest, greatest drug. In fact, they are worse, because at least the pharmaceutical companies have to be able to back up their claims with science and disclose potential adverse reactions in their ads. No such requirements exist for most alternative medical treatments, mainly because most of them claim to be supplements rather than medicines. The other problem with testimonials is that they don’t rise even to the lowest level of medical evidence, the anecdotal report. Anecdotal reports in medicine require a careful documentation of symptoms, lab tests, diagnoses, exact courses of treatment, and a patient’s response to treatment. Testimonials almost never present these elements in sufficient detail to judge whether the treatment actually did anything. There’s just no way of telling truth from exaggeration or fiction. Boiled down to the essence, these testimonials usually appear convincing for one of these reasons:
- The patient never had cancer to begin with. It was either an erroneous diagnosis by a legitimate doctor or a diagnosis based on an unscientific and unvalidated test used by the alt-med practitioner. This is more common than one might think (one example is pancreatic cancer), and I may do a post on this issue in the future.
- The patient underwent partial conventional therapy before abandoning it for alt-med (for example, an excision but no radiation or chemotherapy, like Suzanne Somers or Lorraine Day).
- The patient still has cancer but, like Kim Tinkham, has been told by her practitioner that she is “cancer-free.” If the tumor is slow-growing, this may be convincing for many months or even a few years.
In conclusion, be very skeptical of alt-med testimonials. If you look at them closely, you will often find that the patient did have significant conventional treatment; that the story is vague (often omitting, for example, the stage or histology of cancer or even whether the cancer was biopsy-proven); that there is no objective data, just references to other testimonials; or that the data mentioned either comes from alt-med websites selling a product rather than peer-reviewed medical journals or is a non sequitur about studies in peer-reviewed sources. They also have an afterlife, and it is not uncommon for cancer testimonials from patients who have died of their cancer to continue to circulate on the Internet long after the patient’s death, much like the undead. Finally, remember that conventional medicine is not above misusing testimonials in advertisements. Treat them with the same degree of skepticism. Look for the scientific and clinical evidence, not stories of great cures, regardless of the type of testimonial. If there is one principle I hope to impart here, it is that the claims of conventional medicine and alternative medicine should be treated the same and that they should be held to the same standard of both basic scientific and clinical evidence. I do not differentiate between the two when considering evidence, nor should you.
Note: In the interests of full disclosure (in case any of you recognize parts of the article above), I wanted to mention that is an updated and substantially revised version of an article I wrote three years ago. Things were exceedingly hectic and crazy this weekend due to professional and personal obligations, but new material will be on the way next week. I will do this from time to time for articles that I’ve written before that I particularly liked, and this was an obvious candidate to be updated first because it’s just as relevant today as it was then. (I was also amused to find out in researching the update that Dr. Day no longer sells Barley Green because she won’t have any truck with New Age mysticism or “energized water.”)