Alternative Medicine and Cancer
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What's so hard About showing That a cancer cure works?
Part 3. A Better Way, but --- (Exploring a Few Problems)
ranyone brave and sincere enough to publish true results risks losing market share to those with fewer scruples or sillier illusions."
Where we are ---.
All we know with any certainty about alternative cancer treatments is that patients rarely seem to go into remission while using them, sometimes probably permanently. I have proposed, without knowing for certain, that credible accounts of remission/cure of overt cancer remain rare enough to be accounted for by spontaneous events. In part 2 I constructed a challenge that could help resolve this question.
The ability to produce remission is also arguably the only level of activity worth looking for from alternative methods. A number of reasons are given in Part 1. They include the observations that no treatment can be claimed to be able to cure cancer unless it can first induce remission, and that only powerful and obvious treatment effects could be reliably detected in the casual clinical observations of alternative practitioners.
Weaker effects may also not be very negotiable currency within alternative medicine. What cancer sufferer would settle for a little prolongation of life, when others hold out some promise of cure?
The meaning of words
No, the spontaneous remissions are not truly spontaneous. There must be a reason for them; we just don't yet know what it is. And yes, I know about the claim that it is the diet, but a rather dubious study referred to in support of that claim doesn't take into account that most patients with serious cancers try materially changing their diet.
Many promoters of alternative methods are uncomfortable at remission/cure being the dominant test of treatment usefulness for the fairly obvious reason that they find it hard to produce credible cases. They redefine the questions and otherwise try to evade scientific and ethical responsibility, even when their own promotional material raises expectations of dramatic results. "What is 'cure' anyway?" "Who are you to decide these things? Not everyone thinks the same", ranyway, we don't make that kind of claim." "We don't think of cancer that way, we are about 'healing'." "Cure of cancer is not possible and is it a matter of learning how to live it."
The following are the exact words (apart from the withholding of names) of someone who sells products connected to a popular charlatan's theories on how cancer can easily be cured. These were responses to a cancer sufferer complaining that she had tried everywhere, including at the main clinic, to be put in touch with a single cured cancer patient (good strategy!), without success.
"The word cure means different things to different people. I don't think anyone wants to talk cure in such a situation."
And when challenged further --
"It is not the words "cure" or
"remission" that pose the problem, it is what the list members mean by
the word(s). From reading Dr. XXXXX''s books one can figure out what she
means by the words, but from reading these inquiries I cannot figure out
what is meant by those here who use the words."
Every cancer patient knows the meaning of cure and remission, or at least they did before tangling with fools and scoundrels. The words mean exactly the same for cancer as they do with any other illness. They mean the elimination of the symptoms and physical manifestations of illness. Cure simply adds permanence.
"We don't claim that."
Those promoting alternative treatments often don't make precise claims, sometimes using legal concerns as an excuse for shoddy standards of informed consent. But inference can work as well. The promoters may make much of one or two test tube or animal studies suggesting anti-cancer or immune activity, or clinical studies of dubious quality from distant parts. The hopes of cancer sufferers will tend to fill in the gaps, helped along by bolder claims and the inevitable low-quality testimonials that appear on support sites and cancer discussion lists.
Supporters sometimes send similar material along to newsgroups and sceptics, saying "see, alternative methods DO work!". But even if the information is reliable, the question for the cancer patient is not whether the methods can "work" in a rarefied, academic sense. Anything will kill cancer in the test tube in sufficient concentrations, and many methods have some effect upon animal cancers but none at all in humans.
Our patients have to make choices deserving of far more precise information. They need to know if the methods work well enough to justify often substantial expenses, or the enormous commitment of time and effort some demand, or to deserve selection over the many others making similar claims.
A few cancer sufferers are considering more critical choices. They need to know whether the method can serve as a substitute for medical treatments with proven cure rates.
Settle these critical questions and we can worry about any finer print later. It is easy to show that those promoting alternative cancer treatments are arousing unwarranted and dangerous expectations in seriously ill people (see What Do Alternative Methods Really Do?). This why they are despised by so many. It is the nature of the claims being made that is the problem, and not necessarily sure knowledge that the methods do nothing at all for the cancer patient.
Does Producing Remission Really Matter?
I recently came across a Laetrile site that cheerfully advised cancer sufferers not to expect their cancer to go away and not to even remove the primary cancer unless that is easy to do and "the patient wishes to do so"  . It says "the tumor is merely a symptom, not a cause". This is irresponsible lunacy. These are not sincere people.
The ability to make cancer go away or shrink is important for reasons already given. Nevertheless, more credible critics such as ralph Moss have objected to the emphasis that medicine places upon remission. They rightly point out that remission does not necessarily mean prolongation of life. I think they miss the point that if the patient cannot be cured permanently, treatment is largely directed at controlling symptoms for as long as possible, and very often that is impossible to achieve without producing cancer remission.
Another reason for concentrating on methods that have more obvious effects upon cancer, even if only temporarily, is that such a strategy has over time allowed them to evolve into regimes with true curative potential. This applies to the latest versions of chemotherapy for previously very poor prognosis cancers such as leukemia, metastatic testicular cancer and aggressive childhood metastatic cancers. These can now be cured at respectable rates using chemotherapy alone..
What I suspect such critics have in mind is the use of chemotherapy or radiotherapy (always vulnerable targets) in patients with advanced cancers that are usually relatively unresponsive to any kind of treatment, such as stage lV non-small cell lung cancer (NSCLC). Survival from such cancers is usually a matter of months without treatment and it is again often the hope of palliation of distressing symptoms such as breathlessness or bone pain that triggers a trial of them in normal medical practice. Yet, even at this extreme, studies assessing treatment results usually look at both remission rates and length of survival, and nearly always find a correlation between them [e.g. 2]. More recent studies look at quality of life measures, too, with generally favourable results [e.g. 3].
Nevertheless there is no doubt some patients receiving chemotherapy derive little benefit from it, and some are actively harmed. No law of nature says that treating cancer has to be easy, in fact those who understand cancer well can explain precisely why it often is not.
Some final comments : The cancer state is a dynamic one. Cancers vary so greatly in their sensitivity to various treatments that it is likely that anything that merely reduced the rate of multiplication of cancer cells would cause some kinds of solid cancer to regress (i.e. go into remission). Such an agent should certainly cause fewer leukemia cells to appear in the blood stream and improvements in other measurable objective manifestations of cancer. Such effects should also be demonstrable in simple studies of the type I am about to propose.
Some advice to alternative practitioners - protect your credibility.
It is demeaning to have to respond to allegations undermining mainstream medical care when from those promoting methods have never, and probably will never, be shown to have any useful effects on human cancer. Equally galling is that such issues are often raised in alternative writings as though doctors wouldn't be clever enough to think of them, or don't care enough about their patients to want to know whether they are really helping them. Any search of a vast cancer literature will show how the very same concerns about efficacy and quality of life matters are regularly discussed and researched.
Honest alternative practitioners should concentrate on firming up their own evidence. We know they have just as much difficulty with the bad cancers as we do. Attacking soft medical targets with limited understanding or without caring to look thoroughly at all the data does little to win sympathy and doesn't make alternative methods look any better. Nor does trying to make cancer out to be anything other than it obviously is. Most cancer sufferers know better, I suspect, even as they despairingly may give dubious remedies a trial.
And A Concession
Medical care is not all about effective treatments. Some of my most grateful patients and their families have been those I tried hard to help but failed. However, some patients have world views that do not blend well with scientific medicine. For them, alternative medical practice and its various support groups may provide valuable comfort and support. It is a great pity that what feels right does not necessarily correspond to truth, or yield treatment effectiveness in serious conditions like cancer.
The Need for Numbers
The spontaneous remission problem is why, as many have pointed out before me, it is of vital importance to have some idea of the rate at which remissions are occurring with a cancer treatment. The problem for alternative methods is that none seem able to produce remissions with any regularity. radiotherapy, chemotherapy and hormonal therapy were clearly able to do so when first discovered early last century. Elaborate controlled trials were never needed to show their dramatic effects on many cancers. I can still remember the first time I ever saw a patient treated with chemotherapy. A huge metastasis from a kidney cancer in a rib disappeared completely within weeks and enough dramatic responses followed to remove any doubt in my mind that this was a promising cancer treatment.
How do I know such results are not frequent with alternative methods? Among other things, have you ever considered that with so many patients using alternative methods these days, sometimes before they even get to us, few have more experience of the use of alternative methods than we surgeons and oncologists? Anyway, if you doubt me, look for yourself. See how many cases you can find where overt cancer has regressed with alternative treatments alone.
A crude way of trying to determine whether a treatment is producing regular remissions is the best case series, described in Part 2. An unusual cluster of remissions associated with a particular treatment could provoke interest. Such reviews at least enable closer examination of the cases being used as testimonial evidence. Weak or invalid ones can be eliminated.
As an aside, cancer sufferers might reasonably ask: "why be so strict with the evidence, when many of us are mortally ill? Why not use anything that might help?" Part of the answer is that once one method was accepted on dubious evidence, it would be impossible to resist all the others. They can all marshal about the same levels of public support and anecdote. The mainstream would soon be encumbered with the same frustrating uncertainties and toss-a-coin choices that afflict the alternative scene. Cancer sufferers would be justifiably clamouring for often expensive and complex regimes. No health care system could cope.
Note a regrettable clash of perspectives. The cancer sufferer can afford to give alternatives considerable benefit of the doubt, when acting at their own expense and risk.. Doctors, on the other hand, must be reasonably sure something works before endorsing it for routine medical care.
The better way.
A better way of uncovering a truly effective cancer treatment is to perform simple prospective case series similar to the Phase I/II studies performed by oncologists, looking for cancer responses such as partial or complete remission. This is where I have been heading.
The Gonzales study on patients with biopsy-proven inoperable pancreatic cancer  shows the potential of such studies, even though he was not looking specifically at cancer remission. He showed prolonged survival in a mere eleven consecutive (but selected) patients with biopsy-proven, inoperable pancreatic cancer. The study had impact because the cases were well-documented and such patients typically have a very poor prognoses. A 1.3 million dollar trial of the method is in progress as a result. Some doctors, including myself, remain dubious (see What Do Alternative Methods Really Do? -The Inside Story). Note that this study would have been more convincing if Gonzales had been able to show cancer remission occurring in the longer term survivors.
Such studies are simple enough to perform. Briefly, the researcher selects for special attention those patients who would make for a good test of the treatment, e.g. those with ongoing, measurable signs of cancer but still in reasonable health and not under other recent treatment. Document them well with all relevant test results. Follow them up. Keep good records. Gather the results. Over time an increasingly accurate rate of response to the treatment would be obtained, so long as the outcome sought was an obvious effect such as partial or complete remission (or even, at a pinch, stationary disease). Prospective patients could then be advised much more accurately what to expect of the method.
And Pigs Might fly?
This part of my "manual" has been very slow coming. Here is why.
I had intended to now simply describe how such basic, uncontrolled, barely-beyond-anecdotal evidence should be gatherable by anyone with the intellectual resources and practice base needed to produce a tenable cancer cure claim in the first place. I would offer help in setting it up. I will probably still do this, later, in a just-now-conceived Part 4. But my mind has been increasingly distracted by some inherent absurdities in what I am asking. The project stalled for a while.
Let's look at certain realities.
What is being proposed is not exceptional in any way. It is a simple, logical and common sense thing to do if you think you might have an effective cancer treatment. It would provide the kind of information, at least to a ballpark degree, that every cancer patient seeks when exploring alternative methods. It should have been the very first thing ever done with the treatment, as it would have been in conventional oncology.
Without such study, there can be no certainty that any alternative method does anything for cancer, in view of the difficulties in reliably detecting lesser effects. How would even the best dosages of remedies, or the best combinations of treatments in often very complicated regimes ever be determined, if there was never any attempt to keep track of results this way?
The incentives are great enough. Any method showing clear results with established cancer would wipe the floor with the competition, including some aspects of conventional cancer care. Fame, fortune, and above all, sweet vindication, would surely follow.
Given all this, it would be astonishing if some have not already tried to produce this kind of data. If so, they have never deigned to publish the results, not even in receptive alternative medical journals. I believe that most choose rather wisely not to perform such studies because they already know or suspect what they would show from daily experience. They would be committing professional suicide.
Are then, the Promoters of Alternative Treatments all Outright Frauds?
Not necessarily. I know that some are quite detached from medical reality. If you happen to believe that without treatment cancer is always a rapidly progressive and fatal condition then the many patients who defy that prognosis naturally would be seen as successes. The same applies if you think concurrent medical treatment almost never helps the patient or usually makes them worse.
Some claim that conventional medicine regards five year survival as "cure" and then apply this quite erroneous perception to their own cases. Yet even the more advanced breast cancers of early last century had about 25% five year survival rate, untreated . Alternative circles show no understanding of the meaning of five (or ten, or three) year survival rates. Their main function within conventional medicine is to allow the results of treatments to be compared. I explain their relationship to cure further here.
Cancer patients often find their way into alternative care when at their worst following recent treatment with surgery, chemotherapy and/or radiotherapy. The doctors have presumably told them their treatment is completed for now, which in the jargon of testimonial can become " we can do nothing more for you". Their general condition improves dramatically as they recover from the side effects of the conventional treatments and at the same time the normally delayed effects of radiotherapy and/or chemotherapy on the cancer begin to appear. They go home much better than when they arrived. Patient and therapist are left marvelling at the "response" to the new treatment.
It requires knowledge, experience and intellectual rigour to not be deceived by the many traps in medical practice. One correspondent described to me how one of his patients was already "defying the odds" by living a few months beyond the average life expectancy with her cancer. I had to point out that perhaps half might defy those odds without his treatment..
Perhaps some also have have intense proprietary feelings towards their treatment method and their patients. Any truly useful method would be taken over by doctors, tested to death, modified, made to work better. There may be more appeal for some in the role of the persecuted genius or in being an exclusive source of succour for a small but adoring group of followers.
But I can't see into the minds of all to determine what mixtures of fraud, self-deception, delusion, sincerity or simply hatred of doctors lie there. And of more importance for the progress of this discussion are certain incentives/disincentives built into the alternative cancer marketplace. We would have to find a way around these, if useful research is going to emerge from alternative sources.
Some Perverse Effects of Testimonial-Based Medicine.
The alternative medical industry consciously or unconsciously exploits one of the more appealing aspects of alternative medicine - patient empowerment. It is held that the worth of treatments can be determined by the patient's own research, mainly through a combination of trial and error ("find out what works for you") and listening to the experiences of others (testimonial).
But patient empowerment of this kind patently does not work with cancer, at least not for most patients. There is no time and not usually the funds to try everything out. And the well-meaning but usually seriously flawed testimonials of other cancer patients on mailing lists and newsgroups sadly serve the marketing needs of the alternative cancer cure industry more precisely than the needs of the new cancer patient.
Testimonial is a powerful lure, but it focuses attention while very important information is concealed. Even if seemingly valid, it leaves critical questions unanswered : "How representative are these good cases? What usually happens to cancer sufferers who use this method?" And, "how might it compare to all the other methods being advised?" The cancer sufferer is entitled to know.
Not only is the option of choosing treatments on the basis of relative effectiveness denied the cancer sufferer, but there is no easy way to exclude all the useless ones. Testimonial-based medicine clearly fosters fraud. Any crook can invent a cancer cure. Any fool can obtain glowing recommendations from patients, while in that early phase of infatuation with anyone offering miraculous relief from a frightening illness.
The Internet especially places few constraints on this kind of exploitation of the vulnerable. Folk who previously never needed to know a thing about medicine and have no idea how to "do your own research" are thrust into a cauldron of claim and counterclaim wherein there is a mutual, rather sordid agreement NOT to apply any practical external yardstick (such as the simple prospective i.e. planned studies I am suggesting) by which treatment worth can be judged.Equally perversely, and the main point I wish to make here, the acceptance of testimonial (or equally feeble levels of evidence) as a marketing standard for this industry seriously inhibits the production of useful medical knowledge by those at the more honest end of the alternative spectrum. Anyone brave and sincere enough to publish true overall results runs the very real risk of losing market share to those with fewer scruples or sillier illusions. Equally unfairly, it sets them up as an easy target for the sceptic, as the true results are invariably nothing like the "this is the answer to cancer" hype and the testimonials are intended to convey (see What Do Alternative Methods Really Do? -The Inside Story)
For this reason I have some respect and sympathy for those who have been brave enough to publish harder data. They are usually the "old hands" of the industry, those with at least some tradition of sincere, if probably misguided, belief: Gerson, Livingstone-Wheeler, The Biomedical Centre (Hoxsey), and Kelley/Gonzales. Hoffer/Pauling. Newcomers to the field don't need to bother. The marketplace has now been set up nicely for anyone wanting to make a buck out of very ill people.
Testimonial based medicine completely ignores the true interests of cancer sufferers. The alternative cancer industry will never raise its game unless it is forced to. The preferred form of force is market pressure through having a far better informed public.
It would be helpful if one or two honest promoters of alternative methods broke ranks and published some accurate results regardless of what they showed, even risking changing their employment if necessary. I expect that would be the outcome for most, and why what I am proposing here has a ridiculously naive side to it.
Any who were successful in showing a probable treatment effect would have to learn to live with the likelihood that doctors would take it over, test out variations, find out the best dosage/combinations, and get it to work better. If the results were not impressive enough for that to happen and the originators of the claim wanted to stay in the market, they would have to learn how to put the right spin on mediocre results. That could include challenging competitors to show how their treatment measures up using similar yardsticks. But this aspect needs more thought.
It was a nice dream, that lots of enthusiastic amateurs and medical renegades trying out this treatment and that would ensure that no useful cancer treatment would be overlooked. But it's not working. Claims are proliferating without the evidence for any of them ever getting firmer, which is unfortunately usually an indication of weak or no effect.
Part 4. How to do it. (coming)
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5. Hardin Jones: paper, "illustrated by lantern slides" presented at a meeting of the Section Of Biology of the New York Academy of Sciences on January 9, 1956.
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