CancerGuide: Alternative and Complementary Therapies
Alternative Therapies: Hope or Hype?
Alternative therapies are attractive because they offer hope when conventional treatment does not, and because they are generally non-toxic. The question is whether the hope that is offered is false hope. I believe, in distinct contrast to some of the establishment, that few alternative therapies are promulgated by intentional frauds, but I also believe that few, if any, live up to their promised success rate. I also think (again in contrast to most of the "establishment") that some people have been helped by these treatments, and that some of them are promising and should be looked into seriously by the research establishment.
In some cases alternative or nutritional treatments can be combined with conventional treatment, and there may be little to lose. In other cases, conventional medicine offers no effective treatment, and again there may be little to lose.
If conventional therapy offers proven chance for long term benefit, then substituting an unproven alternative treatment may result in your losing your best hope for survival. You may well die as a result. I personally knew several people who forsook conventional treatment of proven benefit for alternative treatment and who died because of it. It is extremely important to examine your motivations. If you are turning to alternative therapy because of fear of the side effects of conventional treatment, or because you are rebelling against the authority of the medical establishment, you are probably making a mistake. If you are turning to alternative treatment because of a magical intuition that "it feels right," instead of solid research into the therapies you are considering, you are probably making a mistake.
Two Bogus Arguments
Backers of alternative therapies often argue that alternative therapies, in general, or some particular therapy have been suppressed by the establishment. Sometimes a grand conspiracy is alleged. For a patient seeking treatment, the question of whether a therapy has been suppressed or conspired against is not even remotely relevant. It is not relevant because it has absolutely nothing to do with whether the treatment actually works or not - which is, after all, the only thing that matters. On the other side opponents of unconventional therapies may cite legal actions against the practitioner such as administering unapproved drugs or treatments without having gone through the proper steps with the FDA, local ethics boards, and so on. Again, even if this is completely true, it is also completely irrelevant as to whether the treatment actually works or not. I advise you to resolutely ignore all such arguments, from whichever side.
Another common argument is that all conventional therapies are both highly toxic and ineffective. Buying into this argument could cost you your life. First, this argument is irrelevant in the sense that even if it were true that conventional therapies don't work, that doesn't mean that any alternative therapy works either. Second, although many conventional therapies are toxic, and can be hard to bear, not all of them are - some are virtually non-toxic and the side effects of many others, however unpleasant, are only temporary. For most patients, even tough treatments are bearable, even if unpleasant. Third, it is a fact that conventional treatment for localized cancer is very often highly effective. Now it is true that, on average, treatment for metastatic solid tumors is poor. You, however, are not some mythical "average". You are an individual patient with an individual case. There are some kinds of cancer that can be routinely cured even when quite advanced. Furthermore, even in a cancer where the prognosis is poor overall, you may have a special situation which is much more curable. If you go with some argument about the "average" patient being incurable with conventional therapy, and you are curable, then throwing away a chance to be cured with conventional therapy is quite likely to cost you your life. Before deciding that conventional treatment will be ineffective for you, you need to get the facts.
While both of these arguments are unreasonable and even irresponsible, that doesn't mean that alternative therapies touted by people who make these arguments are necessarily ineffective. Often people making such arguments aren't the practitioners themselves anyway. Again, the question is only whether the therapy actually works or not.
The key to decision making is to find evidence that the treatment actually works. Such evidence can sometimes be gleaned from the scientific literature. In many cases, there have been papers published by the inventors of these treatments in scientific journals. These may be offered by the clinic or practitioner, or you may find references in a book on alternative therapies, such as one of the books on alternative therapy I recommend. or you may be able to use a medical database, such as MedLine to look up references. You should not assume that everything published in the scientific literature is "true". Lots of bad research has been published in every area of science. If you have some scientific background, you may be able to tell whether the research is credible or not. If the research involves treatment of patients, rather than testing of obscure scientific theories, you'll probably have an easier time evaluating the results. Confirmation of positive results by researchers not associated with the alternative therapy would be especially impressive.
The American Cancer Society and National Cancer Institute used to maintain statements on many of these treatments. These were not only invariably negative, but in my view were often negatively biased. But more recently, the NCI has removed their alternative cancer treatment statements (and are said to be working on a replacement) and the ACS has modified theirs, taking a new line that some "complementary" therapies such as, say massage, that are not intended to cure the cancer can enhance quality of life. At the same time the ACS still takes a hard line on any treatment purported to affect the disease itself. The ACS statements are available online in their Alternative and Complementary Therapies Section
Without a doubt, The best source of skeptical information on alternative medicine on the Net is Dr. Stephen Barrett's QuackWatch site which has a special section on alternative cancer treatments Quackwatch takes a very hard line but there is a great deal of valuable information there that is worthy of serious consideration.
Cases and Testimonials as Evidence
In other cases, the clinics themselves will offer testimonials - patients who claim to have been cured. In some cases, clinics or practitioners will give you the names of patients to call. Or perhaps you will find cases described in a book or in a posting to an Internet discussion group, or on a web site. The conventional wisdom is that testimonials and individual cases are always totally worthless as evidence. Although I disagree with the establishment here, it is also in experience the vast majority of so called testimonials or individual cases are not valid, and even when it looks like a case probably is valid what one can reasonably conclude from that is limited. Nonetheless, I do think some cases are valid and that they count as evidence. I would vastly prefer a treatment which has been tested in clinical trials and which has published data to one where the only evidence is from testimonials and cases. Unfortunately such a treatment is not always available. Obviously when you stake your life on a treatment as your main hope you must be very concerned about the quality of the evidence, and staking ones life on a treatment where the only evidence is testimonials is a desperate act. Some alternative therapies can be used with conventional treatment rather than replacing it, and here the stakes are lower.
Why Cases Count
Most medical conditions are self-limiting - like a cold or the flu - they get better eventually even without treatment and many others, including some serious diseases like multiple sclerosis, can wax and wane even without treatment. So in these cases knowing that someone got better taking an alternative remedy tells you nothing, because it might well have happened even without the remedy. But advanced cancer is different. With few exceptions if metastatic or inoperable cancer is not effectively treated, it will continue to progress until the patient dies. So called, "Spontaneous remissions" are very uncommon and are largely limited to a few types of cancer: melanoma, renal cell cancer, lymphoma, and neuroblastoma. For this reason, I believe cases for these cancers are less valuable as evidence than for other cancers. If you have a well documented case of advanced cancer vanishing after treatment with an alternative therapy (or a conventional one for that matter) which cannot be attributed to other treatment, then I think that definitely counts as evidence for the treatment.
Limitations of Cases and Testimonials
There are two problems with testimonials. The first is the numerator/denominator problem. Even if you are convinced that some patients have been helped, you have no idea how many were not helped. Even if a treatment works rarely there may be an impressive number of testimonials or cases. This is a fundamental limitation of relying on testimonials. Nonetheless, testimonials can establish that a treatment works some of the time. The second reason that testimonials can be misleading is that there may be another explanation for the patient's survival. In fact, the vast majority of cases and testimonials I have looked into are not valid evidence - even when the patient is convinced that the therapy saved his or her life. In order to show effectiveness in a single case, you need to know that:
Since different cancers often respond to the same treatment very differently, it is important that you find evidence that the treatment works in your particular cancer, if at all possible (this may be difficult).
Independent Qualified Review of Cases as Evidence
You can see how tricky it is to determine if a case is really valid or not. It is far better if a qualified expert who is independent from the proponents of the therapy has already examined cases and found them to be valid. Sometimes, such "best case" evaluations do exist. Such an evaluation should include summaries of each case and you should be able to tell if the criteria I just described have been considered. You also need to consider is whether the expert is really independent. Such best case series still do suffer from the numerator/denominator problem.
Evidence or Scientific Proof?
I can tell you right now that the evidence for few if any alternative therapies for cancer is strong enough to constitute scientific proof. Even when there are scientific studies in humans, they are often seriously flawed, and only rarely have claimed clinical benefits been confirmed by other researchers.
To many doctors and scientists, it is a self-evident truth that if the therapy is not proven, then there is no reason to try it, but I disagree. In fact, proven and unproven are not black and white - instead there is a spectrum of proof - there is more or less evidence. Many alternative therapies are non- toxic, and it seems to me that less proof is required to make it rational to use a therapy that does not have severe side effects than a therapy that is more toxic. If a therapy has some evidence and is non-toxic, and if it does not displace treatment for which there is better evidence, then using the therapy just might improve your odds at little cost in quality of life. If you are too rigorously skeptical and demand "absolute" proof, even when if there is no known treatment for your cancer, then you will not maximize your chance of survival.
In my experience, a great many of these so called alternative treatments turn out to have no evidence or virtually no evidence. Many are flat out absurd. So if you are not skeptical enough, and believe anything, then you will probably waste your energy, money, and precious time on things that just don't work.
When you are fighting for your life against long odds, it is extremely difficult to be objective about these things; there is a tremendous desire to believe that something works and you must fight very hard to keep a rational and skeptical attitude. I know this from personal experience!
Multi-Level Marketing Schemes on the Internet - A Special Warning
Although I think the stereotype that practitioners of alternative cancer therapies are largely uneducated quacks is largely a myth, here on the Internet there are a vast number of people trying to sell magical cancer cures who know nothing about cancer or medicine and who fit the stereotype all too well.
The net has been flooded by dealers for products sold through "Multi-Level Marketing" or "Network Marketing" Schemes. A Multi-Level Marketing scheme (MLM) is a pyramid system where in addition to getting a commission for selling product, dealers recruit others as dealers and then get a percentage of their sales, and of the sales of anyone they recruit and so on. As you can see, this is just barely different from a classic pyramid scam.
There are quite a number of MLMs selling purported cancer cures on the net, and I have found that every one involves vastly exaggerated claims for products which are sold at outrageously inflated prices. The sellers are often fanatic "true believers" who almost always know nothing about cancer, nothing about medicine, but are sure what they are selling is a guaranteed cancer cure, and a sure-fire get rich quick scheme all in one. They are virtually immune to reason. Many of them also buy into bogus conspiracy-think arguments that the establishment is suppressing cancer cures to make money. My advice to you is to avoid buying into bogus cancer cures sold by ignorant MLM scammers - at all costs. Many messages touting supposed cancer cures on the newsgroups and many web pages are MLM promotions. Beware!
There is actually a reason why most MLMers are so ignorant about cancer and about what they sell. Because an MLM is a pyramid scheme, recruiting other dealers is a high priority. Finding people who are actually knowledgeable about medicine or cancer would be very tough - there just aren't that many around. And since the evidence for most of these products is in the slim-to-none category, anyone who did have medical knowledge would be very unlikely to sign-up anyway. So the pressure to create a vast network of "dealers" virtually guarantees that the vast majority will be medical illiterates who know absolutely nothing about cancer. Of course motivating dealers to sell and recruit is also very important, and it's not surprising that the atmosphere can approach religious and tends to both create and attract true believers. Because MLMs inherently must recruit people without any qualification to evaluate health claims or advise people on life-threatening illnesses like cancer, I consider MLM marketing of health care products to be inherently unethical - this follows almost mathematically from the nature of an MLM.
Of course even though MLMs are an unethical way to sell healthcare products, the fact that a product is marketed by an MLM doesn't inherently mean the product itself is worthless. However you should consider any information you get from an MLM touting a product to be highly suspect. If it sounds to you like there might be something there, then you should independently research to see what, if any, scientific papers about the product have actually been published in reputable journals, and you should take care to place published information that you do find in the proper perspective. For instance, you should realize that a study in mice does not justify grandiose proclamations of a cancer cure or a new era in medicine.
If after careful research you do decide to buy an MLM marketed product, it may pay to see if the same or close to the same thing is available much cheaper outside the MLM. For instance, one well known MLM was selling Beta-Carotene at 15 times the price of a high quality Beta-Carotene supplement from a very reputable company. Of course the MLM claimed theirs was special but I found no real evidence for that. Similarly, the MLM that wanted fifteen or twenty bucks a pound for flax seeds won't get any business from me since I know I can get organic flax seeds for a buck a pound at my local healthfood market.
This CancerGuide Page By Steve Dunn. © Steve Dunn
Page Created: 2001, Last Updated: August 6, 2004