Understanding alternative medicine “testimonials” for cancer cures

NOTE: I had been thinking about how to migrate my old posts from the old blog over to ScienceBlogs, and came up with an idea. Whenever “real life” intrudes on my blogging–as it has now, thanks to two different grant applications that ate up my entire weekend that prevented me from coming up with the more involved piece about science or pseudoscience analysis that I usually like to start the week off with–I’ll repost one or more of my favorite “classic posts” from the old blog. Given that there is well over a year of material there, there’s lots of stuff that I want to transfer over to ScienceBlogs and expose to a much wider audience than it got the first time around.

The following post originally appeared on December 20, 2004, believe it or not, a mere week after I started my original blog. Back then, very few people were reading; consequently, I’m guessing that the vast majority of my present readership hasn’t seen this piece before. I’d be very interested in comments now about this article and its conclusions–not to mention about any differences in writing style that have developed over a year and a half. One thing that struck me while rereading this (and fixing a few typos) is my consistency of vision; I’m quite pleased at how the blog still reflects my original vision for it a mere week after I started it.

Don’t worry, though; there will be some original material this week, just not as much my usual blogorrhea results in. I find that blogging sometimes helps me break through grant writing block. Even so, thank heaven for the archives. Come to think of it, thanks to the post scheduling feature of Movable Type, this suggests to me a solution to prevent future vacation silences. I could pick some of my favorite posts from the archives of the old blog and schedule them to appear every day while I’m gone. It’ll be perfect for when I’m away for two weeks in August. I could repost a lot of Classic Insolence then.

Now all I need is some sort of spiffy logo for these reposts like the one PZ has.

Understanding alternative medicine “testimonials” for cancer cures

No doubt you’ve seen it. The alternative medicine cancer “testimonial.” They sure can sound convincing. A chipper-looking person claims that this treatment “cured” his cancer. These testimonials almost always include some or all of these elements: First, the cancer patient 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 him. 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. Often, they describe themselves as “being sent home to die.” But the patient “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.

I thought I’d discuss these alternative medicine “testimonials,” as they are one of the most visible and highly abused methods of selling alternative medical therapies. I will concentrate on breast cancer as the prototypical example, but many of the same comments apply to other diseases and treatments. In future posts, I’ll compare testimonials with anecdotes and other types of medical evidence, and try to explain minimum standards for medical evidence.

But first, some terminology: 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 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.

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 can be expected to have long term survival with surgery alone.In the case of a lumpectomy, the local recurrence rate in the breast is in the 30-40% range. Radiation can reduce it to less than 10%. That means that women who forgo radiationare still more likely than not to avoid local recurrence in their breast, particularly if their tumor is small. As far as distant metastases, chemotherapy and hormonal therapy improve survival, but the effect is small in patients with early stage cancers and 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.

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 are in a good prognosis group, where recurrence is uncommon, or have a more advanced tumor but are lucky enough not to recur, often 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.

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 the scientific knowledge or enough critical thinking skills to separate truth from nonsense in medicine. It also seems to be a question of human nature. The diagnosis of breast cancer is devastating emotionally. 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, often 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 other indignities. They often conclude from this that the system does not respect their time or them and that they are considered nothing more than a number, a disease, 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 and back in control. 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 health. Her ignoring the reportedly dire warnings of doctors (unbelievers) is validated. Filled with quasireligious (or explicitly religious) fervor, they want to convert the doubters. Depending upon a woman’s background and beliefs, this religious appeal can be as powerful as the desire for regaining control.

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, she 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 underwent what sounds like a re-excision lumpectomy, refusing the addition of axillary dissection, the standard of care at the time. She then started an alternative medicine regimen of diet manipulations and prayer. Nine months latter, 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 like that.) The mass was, according to her, partially removed surgically, after which she was “sent home to die,” suffering many other physical symptoms in the process. She “cured” herself with a regimen that included various dietary manipulations and prayer. 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 part of her second report (leaving 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 all us doubters wrong by releasing the last pathology report, but she does not.

I mention this case not to trash Dr. Day, but rather 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 Barley Green and her books and videos. 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.

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.

So, 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 (such as surgery); 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. Also 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 scientific and clinical evidence. I do not differentiate between the two when considering evidence, nor should you. I hope to expand upon this principle in the future.