Monday, December 20, 2004

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 radiation are 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 nice 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 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, 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 to show its efficacy. 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 They are no more "unbiased" than pharmaceutical advertisements. 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 of a cancer); that there is no data, just 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 nonsequitur from 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.

12 example(s) of insolence returned:


At 12/20/2004 10:44 AM, Blogger Saint Nate said...

"I used to be an uninformed consumer, but now thanks to Respectful Insolence I've gained peace of mind and shed pounds without exercising."
--St. Nate

Testimonial use is half of the marketing strategy for alt-med. The other half is the horror stories, such as the five to 10 or 25 pounds of rotting meat the average American has their colon (to sell colon cleansers), the dangers of sodium lauryl sulfate to sell shampoos made from coconut extract - which is exactly where SLS comes from), or how someone used to be gray and bloated because of food allergies (to promote their special diet).

Yep, they'll present you with everything but a shred of evidence for their snake oil.

 

At 12/20/2004 11:09 AM, Blogger Orac said...

You're absolutely right!

In fact, you've given me an idea for another post on the exaggerated horror stories and even outright lies about conventional treatments that alternative medicine pushers use to frighten patients away from conventional medicine.

 

At 12/23/2004 11:12 PM, Anonymous Anonymous said...

What's the big deal? Some people who have no hope receive some hope from non-traditional medicine. That's a GOOD thing, as at least they're happier for a time during their remaining time.

If, however, some people shun more promising, traditional cures for alternative cures, that IS a problem. HOwever, people make wrong decisions all the time. It's called freedom. Doctors should just deal and stop bemoaning the First Amendment.

 

At 12/28/2004 12:58 PM, Blogger Orac said...

How, pray tell, was I "bemoaning the First Amendment"? Do be specific, please. All I said was that one should be very careful evaluating alt-med testimonials and that one should apply the same standards of evidence to them as one does to conventional medicine ads. In fact, I even pointed out that conventional medicine ads were not above using questionable testimonials.

How, also, was what I said against health care "freedom"?

That's a fallacy alt-med advocates like to throw at anyone who says anything questioning alt med. It's a nice technique to try to smear anyone who has the temerity to question any alt-med dogma as someone who is against "health care choice" or "health care freedom." I've had it thrown at me many times before. In fact, you've just given me another idea for a post after I get back, in which I will try to show why this is not about "health care freedom."

Orac

 

At 2/01/2005 11:37 AM, Blogger Anthony Campbell said...

Your comments on cancer cure are valid but don't take account of the rare occurrence of spontaneous cancer cure (not necessarily in a religious context). For an article on this, with referenes, see my page:
http://www.acampbell.org.uk/essays/skeptic/miraculouscures.html.

Anthony

 

At 2/22/2005 7:17 PM, Anonymous Anonymous said...

For anonymous:

Do you really think it's allright to lie to someone and tell them they are going to live when they're not? False hope is not a good thing.

I'm speaking from personal experience here. A family member died blaming himself that his alt treatment hadn't worked like the quacks promised it would, while his wife is still grieving that their plans for a long, happy life together will not come to pass.

 

At 2/22/2005 9:30 PM, Anonymous Anonymous said...

Thank goodness you have exposed traditional chinese medicine (TCM) to be 100% useless. For example, the use of the cheap artemisinin cannot cure malaria. Only very expensive Western pharmaceutical drugs can!

Think about it...100% of the Chinese who have used TCM have eventually died!

 

At 2/22/2005 11:56 PM, Blogger Orac said...

Apparently so has your ability to engage in critical thinking (removing the word "eventually," as the death of your critical thinking skills seems to have already occurred.)

Logical fallacy used by "anonymous": Straw man argument.

I made no claims for the efficacy of artemisinin nor did I make a claim that TCM is 100% bogus. I merely pointed out the religious basis of TCM, which is absolutely true. Please try to read for comprehension next time.

And please, try not to use obvious logical fallacies if you wish to post comments to my blog. I will point them out.

 

At 4/17/2005 8:23 AM, Blogger MichaelBains said...

Orac you Rock. I am very pleased to find a medical practicioner who understands the Big 3: Medicine, People, Culture.

Some might ask: Why do patients fall for this? It is not a matter of intelligence.

Amen brother! LOL! If it were simply a matter of intelligence, the number of folk who profess belief in gods verses those of atheist thought would be inverted.

I believe it was in 1992 that the AMA posted the recommendation to its members that those members don't denigrate alt-med to their patients. Whatever supplies the patient with an optimistic outlook is fine; as long as it doesn't REPLACE real medicine!

If only the alt-med industry could realise this as well. Wouldn't they sell more product if they had more success stories? Wouldn't they have more success stories if they encouraged their consumers to trust AND question their Real doctors more?

My wife recently had a mammogram where they found a questionable bump. After a few weeks, they told her it is nothing to worry about; just a lymph node. ??? WTF??? I'm serious that such was the extent of the explanation. If I were completely ignorant on the subject, wouldn't I be expected to infer that lymph nodes are somehow bad? Certainly not as bad as Cancer but... (sigh)

Anyhow, I do indeed trust Medical science. As your post barely suggested though, it is the laziness of Medicine's practicioners that sells more alt-med opportunities than any info-mercial. Such laziness produces, IMO, more mal-practice lawsuits than any ambulance chasing lawyer as well.

You, sir, are a fine example of what more Medical Doctors should be. I hope there are many such folks reading your blog and I will link to it from my own.

Sincerly, thank you.

 

At 4/17/2005 9:53 AM, Blogger Orac said...

Thanks for your kind words.

 

At 9/15/2005 4:15 PM, Anonymous Pierce Wetter said...

Well, you're a little light on your TCM. TCM isn't actually very traditional, it was created by the Chinese Communist Government.

As such its actually very rote: for these symptoms, perform these actions. Their goal was to create a curriculm you can teach people in 2 years and get a practioner a the end. It covers the 80% of the cases where the symptoms are directly related to the problem, but it fails in the other instances.

Additionally while Qi is usually _explained_ as living energy, that's just what you tell students because that's how it feels. Qi can actually be as simple as the air you breathe and the food you eat. From the inside, visualizing sensing things as "energy" is useful when you are first learning to manipulate your body but you soon learn that the visualiation is unnecessary.

Qi Gong healing on the other hand is a more direct descendent of Taoism, but even there, Qi is not taught as a religious aspect as much as somethign that is there, mundane, and observable.

Doctors are always telling me the triple burner doesn't exist as an organ, while they hook an EEG to my upper burner and an EKG to my lower burner.

Anyways, as a Qi Gong apprentice, the only way I know of to get rid of cancer is actually to send it messages to cause it to die. Basically the same thing Western medicine would do with surgery, radiation or chemo.

So alternative medicine isn't necessarily as alternative as you think...

 

At 12/12/2005 8:59 PM, Anonymous chameleon said...

I mean nothing by this post. Orac could be 100% accurate about naturopathic (sic) treatments, and I have no doubt that a good percentage of people pushing herbals are out to line their pockets. I think we also should give a nod to the fact that 100% of Pharm companies are out to line their pockets. I also think we should listen to the lists of side affects of manufactured drugs. "Side affects may include fainting diarrhea, abdominal pain, and liver damage…ECT” So. Let me ask, and I really want to know. I’m not being sarcastic. When someone you love with all of your heart has cancer (my situation) or another terminal disease and science can’t do anything—what are we supposed to do? It is easy to look at “snake oil” with a clinical detachment when it isn’t you. Some one tell me when my loved one CAN’T get more than 5 minutes with a doctor at one of the “best” cancer facilities in the country, what else do we try? Do we wait around for a clinical trial where we may or may not get the real medicine and may just get a placebo?
If we do get the real medicine it may be worse than the cancer. What do you do in the face of metastic prostate cancer? Take your shot and as the doctor said “Well, this might keep you alive long enough for something else to kill you.” Do we go down with out some sort of a fight? We have been through chemo, surgery, pills, and now shots. I’m asking. I’m begging. With literal tears in my eyes tell me how to save my fiancé! Trying natural cures are all I have left-the only thing to pin my hopes on. Orac are you SURE it’s all snake oil? I can’t critically think-clinically detach and anyone who can when it is some one they love better check their pulse. So, all you critical thinkers tell me what to

 

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