HOW TO
EVALUATE A CANCER TESTIMONIAL
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The basics ---
1. Was cancer definitely present
, as shown by reliable tests, when treatment was commenced?
2. Did it go away? (or clearly respond otherwise, as judged by the
same tests)
3. Was the advocated treatment the only one used ?
(within 2-3 months of the apparent cancer response)
(N.B The same principles apply to case reports produced by alternative practitioners and clinics, and they will be treated as the same here.)
A "good" testimonial should fulfil these three requirements. A bare handful of such testimonials involving certain common cancer states would provide powerful, almost indisputable, evidence of a useful cancer treatment, if within in the recent experience of the one clinic or associated with the use of one method.
Unfortunately anything less induces doubt. Weaker testimonials may sometimes be suggestive of a possible treatment effect, but they cannot stack up into strong evidence even when produced in great numbers. Indeed, the more there are, the more something stands out like a sore thumb. That is that alternative methods are hardly ever displayed as having unmistakable effects on established human cancer, even though the usual claims require that they should be able to do so, and suitable cases are being treated by the thousands. Why is it that obvious cancers, such as those described in reference [1} cannot be shown melting away in photographs or scans, under the influence of reputed cancer-killers like Laetrile, or oxygen, or alkalisation -- or of the patients' supposedly reawakened immune systems.?
The promoters of alternative cancer treatments have ordained that their methods should be judged by the testimonials that they supply. and I am quite happy for you to do so too, so long as all the facts are checkable and you are prepared to apply other irrefutable medical knowledge to them. It is not as simple as it seems. It requires more knowledge about cancer, its variability, its uncertainties and its response to various treatments than you will find in any "alternative" source.
Understand that a testimonial is nothing like the case reports published in medical journals. A testimonial is a story told so as to influence the treatment choices of persons having no depth of medical knowledge. The story-teller is free to choose what information to supply and to mould it in ways that suit that end. The motives may be good and based upon honest belief. There is usually no intention to mislead. Testimonials nevertheless almost always do mislead, through the wishful thinking and often severely limited medical knowledge of both the the story-teller and most of the target audience..
I also strongly believe that cancer patients providing testimonials have a duty of care towards other cancer patients comparable to that of any medical practitioner. Are they not offering medical advice? They should themselves first investigate all matters bearing upon their claim, and indicate doubt wherever it exists. Cancer patients and their supporters should also be more assertive, querying flawed testimonials or ones that provide incomplete information. Surely cancer sufferers deserve information they can trust.
The following may help explain why the above three rules are so important.
SOME common problems
Was cancer still present? An extremely common flaw in testimonial is that the cancer may have already been completely eliminated by previous treatments such as surgery. It surely provides the true explanation for the Binzel testimonials transcribed below.. This is part of the reason for rules 1 above, and also rule 3, as even treatments given with palliative intent (not expected to cure) sometimes have unexpectedly good results. . About fifty per cent of all invasive cancers are now cured by conventional methods, although the cure rate may vary from near zero to nearly 100% depending on cancer type and stage.
Cancer may never even have been shown to be present at any stage <examples> . Yet cancer sufferers will be referred to such ridiculously unreliable evidence as showing how "thousands of people are curing themselves of cancer every day".
Were all treatments disclosed? Important conventional treatments may be overlooked, even though they provide a ready explanation for the benefits described <see example 2>. Be prepared to ask for more information, as I did in that case. Such omissions are especially common with hormonally sensitive cancers, such as those of the breast and prostate. It seems some patients don't regard hormonal interventions as serious treatments even though they are capable of producing quite dramatic and prolonged remissions.
Are there false assumptions as to prognosis? Since testimonials rarely ever fulfil the rules described above they have to use other ways to create an assumption that things would have gone badly if it were not for the treatment being advocated. Examine how the expectation of a bad outcome is established. Be prepared to research the question further.
Ignoring the curative potential of surgery and other treatments has already been mentioned. Sometimes blatantly false information as to prognosis is provided, as in Case No 18 in the Binzel testimonials .
It may be implied that cancer always has a rapidly downhill course, when most types are quite variable in behaviour and some can even quite regularly undergo "spontaneous" remissions . However, contrary to what some sceptics seem to think, spontaneous remission is one of the least common reasons for uncertainty in testimonial. It mainly comes into consideration with certain kinds of cancer: kidney cancer, melanoma, .some kinds of lymphoma, neuroblastoma in children and chronic lymphocytic leukemia, although possibly no cancer is completely immune.
Many testimonials depend upon the assumption that doctors, whose opinions may otherwise be held in great contempt, can predict the prognosis of patients with serious cancers to within a month or two. It is actually notoriously difficult to predict outcomes with most kinds of cancer. Many of the predictions found in testimonial are so unlikely, given the described state of the cancer, as to suggest fabrication or at least faulty recall as to what was actually said. If pressured for a prognosis experienced doctors will normally offer a wide range of possibilities, and perhaps the bleakest one tends to stick in the distressed cancer patient's mind. It is usually not difficult to check the facts in relation to any of the more common kinds of cancer.
"The doctor was amazed -- " (by a patient's good progress) is thus as likely to reflect a doctor's inexperience of the sometimes erratic behaviour of cancer, as an alternative treatment benefit. Be wary when you encounter this phrase. I am sure it can be a truthful observation, but it also seems to be occasionally relied upon as a prop in weaker testimonials.
Testimonials as to supposedly unusually prolonged survival with cancer are thus usually rather weak evidence for a useful treatment effect. They would carry more weight if there was also evidence of definite cancer remission (disappearance or shrinkage of cancer) as per rule No 2. Even with palliative chemotherapy lengths of survival are correlated to the ability of the drugs to produce remission e.g. [5] .
Tricks of the "alternative" trade.
Living for five years is NOT regarded as a cure by doctors although some cancers, such as bowel cancer, very rarely relapse that long after treatment . Some cancers have substantial five year survival rates even when left untreated e.g. breast cancer.
The promoters of alternative methods often lay the groundwork for their testimonials by first painting as dismal a portrait as possible as to the results of surgery and other conventional treatments. Any good outcomes can then be claimed as due to the addition of their methods. This is, again, why you should require clear evidence that the cancer was still active at the time the advocated treatment was commenced. Doctors assess cancer treatments this way and there is no reason why those providing alternative methods should be exempt. They should be eager to show what their methods can do in such cases.
Others try to bamboozle their clients with tricked-up theories about cancer, such as that there is no need to worry about the cancerous lumps -- they are merely the symptoms of something else that they happen to have a cure for. It is difficult not to see this as a cynical attempt to get around the fact that their methods don't have any obvious impact on cancer at all, or possibly even as a ploy to induce clients to continue buying their products long after it should be clear that they are not working.
Philip E. Binzel MD, whose testimonials are referred to below, provides an excellent example of these last two strategies. You can read his book online.
Understanding adjuvant treatments.
You will also encounter the assumption that a patient's outlook must have been very grim if doctors were advising more severe kinds of treatment, such as radiotherapy and chemotherapy. Sometimes that is true, but these measures are also now quite often used as "adjuvants" (add-ons) to surgery The prognosis for cure may already be reasonably good but results are known to be improved by the additional measures. It is thus not at all unusual for such patients to remain alive and well later after refusing to have them.
Radiotherapy, for example, is mainly only suitable for the treatment of small regions of the body. It is recommended after surgery when there is a significant risk of cancer coming back at the operation site i.e. the surgeon cannot be sure that he/she has "got it all".. Sometimes that risk is extremely high, as when lumpectomy (wide excision-biopsy) is performed initially in the hope of avoiding mastectomy for breast cancer. Without radiotherapy the risk of a local recurrence in the breast may eventually be as high as 40% after lumpectomy alone, leading to mastectomy or worse. Yet that means 60% of patients would get by without it. If patients are prepared to accept the risks, they can elect to do so.
Similar considerations apply to adjuvant chemotherapy, except that it has the ability to treat the whole body, almost regardless of where cancer cells may have travelled to. . The hope here is to prevent cancer coming back later in the bones, lungs, liver or elsewhere (metastases), where, with a few notable exceptions, it can usually not be cured. But it may only work sometimes, improving long-term cure rates a little. For example, in one large study the ten year cancer-free survival rate in women under fifty years old with stage 1 breast cancer was 78% with one version of chemotherapy but 72% without it. [4] It is up to the patient to decide whether a six per cent better chance of being alive and well in ten years is worth a six month course of chemotherapy . Most doctors would feel justified in recommending it, but, again, most patients will get by without it.
I have gone into some detail about this so as to show how a very common kind of breast cancer testimonial has no real basis. The story-teller claims to have cured their breast cancer "without any conventional treatments ". They don't know that the simple excision biopsy or lumpectomy that they had to establish the diagnosis of cancer will be enough on its own to "get it all" and cure many early breast cancers. They are attributing to alternative measures outcomes that were simply due to luck. I present such a testimonial in http://members.bordernet.com.au/~pmoran/cancer/BCtestimonial.htm . and point out there that there are also a lot of women who have lost this gamble but whose stories get far less publicity. .
There are testimonials in relation to other cancers where it is wrongly assumed that a patient's prognosis would have been hopeless without ALL the recommended treatments, when extra treatments were being advised as precautionary measures and so as to offer the best chance of cure ..
What to take little notice of
I have not made much of apparent symptom responses to alternative treatments, It is not that they may not be important, but even some cancer symptoms such as pain can respond to placebos and some cancer patients develop quite erroneous perceptions as to their progress. Some poor souls become convinced they are getting better even as all around them can see nothing but decline. This is why the emphasis has to be upon tangible changes in the cancer itself. All known useful treatments of cancer have obvious effects on the cancer, in at least some cases.
I provide below some examples of common problems with testimonial. Some of the more subtle and technical problems with testimonial have been described in my discussion of anecdotal evidence.
Observe that most testimonials have multiple faults that could have been avoided by the most basic research, or discussion with an experienced oncologist. This is understandable when alternative circles devote much energy into cultivating distrust of doctors and their publications Yet how can you know what to believe, and who to trust, if you only ever look at one side of the story?
SAMPLE TESTIMONIALS (this will expand as time goes on)
Critical information withheld?
Testimonials have an afterlife.
1. Not cancer.
From the web site http://bestzapper.com/testmony.htm --
I first noticed
the tumor in my left breast in April 1994 when I felt a sharp pain when I got a
hug. I assumed it was a bruise, but it did not go away. My wife Lyn checked it
and found a small lump directly behind the nipple. It grew in size and
discomfort for seven months till it was about 1.25 inches across and 0.25 inches
thick, and was starting to head toward my armpit. I was still taking eight grams
of vitamin C daily with the other anti-oxidants. Then in November 1994, we got
Dr. Hulda Regehr Clark's first book, The Cure for All Cancers. In the book she
gives her theory that cancer is caused by a common parasite, the human
intestinal fluke (fasciolopsis buskii), "catalyzed" by isopropyl alcohol
accumulated in the liver.
On November 23, 1994, I began the herbal parasite program. Lyn went through the
house clearing out all isopropyl-tainted soaps, shampoos, foods, body products,
cleaners and other solvents. She put four cardboard boxes of the stuff outside
under our deck. After five days on the parasite herbs I noticed that the pain
reduced greatly. Dr. Clark says the parasites die on the fifth day with the
herbs. After two weeks Lyn could feel a noticeable decrease in the size of the
tumor, and after three months the tumor was gone!
This is an absolutely typical story for gynaecomastia, a common (but rarely discussed for obvious reasons) benign condition of the male breast. It mostly resolves spontaneously after some months. . It is commonly due to medications and in this instance could have been due to one of the alternative products he was taking.
Women also often provide testimonials of presumed "breast cancers" going away with alternative treatments. Yet at least nine out of ten female breast lumps are benign (i.e. not cancer), and even suspicious breast lumps coming to biopsy prove to be mostly benign. They are usually due to variants of hormonally dependent fibrocystic disease and many will go away by themselves after a few menstrual cycles.
It is difficult to think of any situation where a testimonial lacking a biopsy diagnosis of cancer is worthy of notice, although metastatic cancer can often be confidently diagnosed by typical appearances on imaging (scans, x-rays) and marker studies.
The author of the above testimonial claims to have cured himself of incurable cancer twice. The other instance was a level lll melanoma, removed from his shoulder in 1987. Level lll means that the melanoma has not yet gone through the full thickness of the skin or even into the reticular dermis, the thickest layer of the skin. It does not mean an advanced cancer, and no other spread is described. . Simple excision will be curative in the vast majority of such cases. The graph at http://members.bordernet.com.au/~pmoran/cancer/Alternative_studies.htm shows that the 15 year survival rate of Stage l melanoma, as this was, is in the vicinity of 75-80%) . The surgeon seems to have offered him unnecessarily aggressive treatment if this story is true in all other respects.
Here is another example where there was no diagnosis of cancer, but you are expected to believe there was. --
My name is
---------. My husband ---------- was diagnosed with cancer of the
lung 3 years ago. His routine physical checkup at the VA hospital
revealed a tumor in one of his lung. The doctors wanted to perform a
biopsy immediately to find out if the growth was malignant and they were
already talking about radiation and chemo "therapy". From past
experience and knowledge, I knew that this was not the answer. These so
called "therapies" provide no hope for real cure. Biopsies are very
traumatic to the body and chemo/radiation are well known to destroy the
immune system. Instead, I immediately began to treat him with
Homeopathy, raw vegetable juice, herbal formula in tincture/extract form
such as the essiac formula, the Hoxy formula, and
For the past 2 years doctors have continued to monitor Chuck's tumor
with CAT scan and PET scan. The tests revealed that a small mass still
remains in his lung, but the doctors aren't concerned about it because
the tumor has completely stopped growing and ------- experiences none of
the usual symptoms associated
with lung cancer. To this day he remains healthy and well.
Who knows? There is some tiny chance that this may have been cancer, I suppose, but if it has stayed absolutely stationary over these two years the chances are very high that it was always a benign lump of several possible kinds. This would be a very unusual way for a cancer to behave under any known effective treatment.
An example from alternative medical legend is the personal testimonial of William Kelley, inventor of the Kelley cancer treatment, who claims to have cured himself of pancreatic cancer. Yet the diagnosis was never confirmed by surgery or biopsy and there are indications of a much more chronic problem going back over many years, with symptoms strongly suggesting a depressive illness and mostly not at all suggestive of pancreatic cancer. The fact that his doctors were unsure of the diagnosis in the days well before modern scans, and were considering diagnostic surgery cannot be taken as proof that cancer existed. It is sometimes claimed in alternative circles that he was found to have extensive cancer at operation but in his own account he states that he refused surgery.
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2. Critical information withheld.
A well-known Australian sporting figure had advanced prostate cancer. He appeared on television and was widely quoted in the newspapers claiming that symptoms had improved and his very high PSA levels had fallen dramatically through the use of an antioxidant herbal drink. The company selling the product was using his story to promote it.
He was also receiving hormonal treatments that very commonly induce such remissions. He did not reveal this until I asked him directly on his blog < http://www.barrygomersall.com/ > but, to his credit, he did so then.
Barry unwisely stopped his hormonal treatments and later required radiotherapy for secondary cancer in his spine (Mackay "Daily Mercury" Jan 17th, 2007). His death was announced in February 2007. His web site still supports the original claims, proposing that his death was entirely due to a blood clot. That is a not uncommon terminal event, but those maintaining the site should eventually supply clearer information about the state of his cancer, such as recent PSA levels. Cancer sufferers deserve the fullest disclosure with such important claims as those to do with cancer treatment.
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3. False information as to prognosis? (the Binzel testimonials)
"Case No. 18: B.W.
This 44-year-old woman was seen for the first time on 2/6/81. She had
been found one month prior to have carcinoma of the descending colon
with 7 positive lymph nodes. A colostomy was not required. She received
no radiation or chemotherapy.
She was started on a nutritional program. Now. some 13 years later, she
has had no recurrence of her disease and leads a normal, active life.
What is so unusual about this patient? She had cancer of the colon with
metastases. The odds of her surviving 5 years were one in one-thousand.
Yet, she lives a normal life with no recurrence of her disease after 13
years. "
This testimonial comes from a book called "Alive and Well" [3] by Philip E. Binzel, MD who believes he can cure cancer using nutritional methods and Laetrile.
There is nothing very unusual about that outcome. . Nor about case no
8, from the same
source.--
This 45-year-old woman first was seen by me on
1/28/80 with a history of having been found to have carcinoma of the colon in
September, 1979. Surgery was done, there were no metastases, and she received no
radiation or chemotherapy. She was placed on a nutritional program. That was 14
years ago. She is now 59 years old and has had no recurrence of her disease.
And another that almost certainly represents the natural course of the disease after curative surgery (case No 5)--
This 70-year-old woman was seen by me for the first time on 9/19/88. She had one-half of her stomach removed one month prior because of carcinoma. She received no radiation or chemotherapy. She has been on her nutritional program for five years. Now at the age of 75, she remains well with no recurrence at the primary site or with any metastases.
Hardly any of the 21 case reports that Binzel recounts in his book represent rare or unusual outcomes. If you read his book you will find out why his testimonials are of this type. He believes that conventional methods do nothing for cancer, a very convenient belief for a cancer charlatan.. <Back>
5. Cancer testimonials have an afterlife.
Testimonials often merely reflect what a person believed, or wanted to believe, at one point in their illness, yet I don't think I have ever seen one retracted when the claims later proved false or the patient died, as is usually the case whenever someone tries to treat established cancer with alternative methods alone.
This man had a squamous cancer of the floor of the mouth that was growing out through his lower lip when I first encountered him. He refused any conventional treatments, believing all the foul things said about doctors and their methods within alternative circles ("Get thee behind me, Satan", I was told when I once suggested he might reconsider some conventional measures if his current choice of treatments was not helping)..
Over the course of two years or so he strongly advocated many alternative methods, having absolute faith that with those and the help of God he would one day be cured. . His faith could not be faulted.
One of his testimonials can be found on the Cansema site (Case #061503 at http://www.altcancer.com/test/mel_gregory.htm ) At the time he believed the "black salve" (Cansema) was curing the cancer, although it was causing him so much pain he was at one time seeing a dentist for local anaesthetic injections before applying it..
This is what his cancer looked like later, shortly before his death.
Needless to say his testimonial is still there on the Cansema site [1] as of January 2007,
The cancer never apparently metastasised, which means that he should have had a good chance of cure with conventional methods, mainly surgery, if he had sought it early in the illness. The treatment may have been drastic and unpleasant because of the location of the cancer adjacent to the lower jaw. (Thanks to you-know-who for the additional photos and further information as to his progress.)
Illustrating the influence of personal belief in testimonial, this man became convinced that he was seeing Hulda Clark's parasites in the bloody discharge from the cancer. He proudly announced that he had proved her theories about parasites and circulated photographs supposedly displaying them. Here are examples -- clearly streaks of bloody mucus..
References
[1] Over the course of a few weeks' correspondence with one of the principals of a prominent and typical alternative cancer clinic he produced three current cases that would have provided ideal tests of his treatment. Below are photos of one of them, a patient with an enormous BCC on his back and a second smaller one higher up, never treated conventionally. This is an absolutely ideal case for demonstrating the effects of a cancer treatment. Another had visible secondaries from melanoma, and the third had a probable lymphoma deposit near an eye. The inability to show effects on patients with such obvious, active, cancers is one of the strongest reasons for doubting the claims of alternative practitioners. I believe they must already know that their methods don't work noticeably on patients with active cancers, even though this probably applies to most of their clientele..
I asked for a progress report some months later. There was no improvement, attributed to the patient being unable to follow the full protocol. I was told that "a year and a half of rigorous adherence to a very strict regimen" was required, even though at other times I was told by the same person that dramatic changes can often be seen in cancers within a few weeks. I asked for examples of that, but none suggestive of anticancer activity were forthcoming (resolution of edema and inflammation around cancers was mentioned but these can come and go naturally, perhaps helped by the severe salt restriction this particular method imposes).
.
2. . McLeish JA, Thursfield VJ, Giles GG. Survival From Colorectal Cancer in Victoria: 10-year follow up of the 1987 management survey. ANZ J. Surg. 2002,72: 352-356
3. http://www.whale.to/m/binzel.html
4. Early Breast Cancer Trialists' Collaborative Group: Polychemotherapy for early breast cancer: An overview of the randomised trials. Lancet 352:930-942, 1998.
5,
Buyse and others. Relation between tumour response
to first-line chemotherapy and survival in advanced colorectal cancer: a
meta-analysis
Lancet. 2000 Jul 29;356(9227):373-8. Links