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An all-too-common breast cancer testimonial for “alternative medicine”

One of the consistent themes of SBM since its very inception has been that, when it comes to determining the efficacy (or lack thereof) of any particular medicince, therapy, or interventions, anecdotes are inherently unreliable. Steve Novella explained why quite well early in the history of this blog, and I myself described why otherwise intelligent people can be so prone to being misled by personal experience and anecdotal evidence. Unfortunately, as I have also demonstrated, it’s not just patients who can allow themselves to be misled by anecdotes, but certain physicians who do not understand the scientific method but in their hubris think that their “personal clinical experience” trumps science, clinical trials, and epidemiology.

None of this is to say that there aren’t frequent instances when applying data from population-based studies to individual patients is problematic. It can indeed be. However, it often goes beyond that, and, indeed, if there is one defining characteristic of a quack that I’ve never failed to find when looking at individual cases, it’s a belief that he is able to identify when a treatment works based on his own personal experience and anecdotes. Unfortunately, it’s not just quacks who sometimes fall prey to this, because humans are cognitively wired to infer causation from correlation. This tendency, which was no doubt adaptive early in our evolution, simply doesn’t work well when it is applied to medicine and science. Without a doubt, it is the key driver, for example, behind the widely believed myth that vaccines somehow cause autism and that chelation therapy and other biomedical quackery can “cure” autism, a view popularized most recently by the very popular but very ignorant Jenny McCarthy in the U.S. and before that by the outright dishonest Andrew Wakefield in the U.K.

One of the other reasons why testimonials for quackery seem convincing is because most people simply do not know enough about disease, be it my specialty (cancer) or any other disease, how it is treated, and what its natural course can be expected to be. That is why, when I came across an example of just such a testimonial, specifically a breast cancer testimonial, I saw what is known as a “teachable moment. This teachable moment occurred on the very popular science blog Pharyngula, written by the ever sarcastic biology professor from Minnesota, P.Z. Myers. It actually surprised me in that the usual topics on Pharyngula include evolution, biology, the pseudoscience known as “intelligent design” creationism, politics, and atheism. P.Z. doesn’t usually dabble much in the realm of medical quackery, but my guess is that he was attracted to this particular piece of pseudoscience because of the religious angle.

Specifically, the quackery under consideration is known as God’s Answer to Cancer (GAC). Basically, it looks a lot like any number of quack electronic devices that promise to cure cancer; examples include Bill Nelson’s Electro Physiological Feedback Xrroid (EPFX) machine (1, 2, 3), Hulda Clark’s parasite zapper, or Alan Back’s Advanced Bio-photon Analyzer. All of these devices promise, in essence, to use low level electrical energy to “boost the immune system” and “replenish your life energy” plus or minus an additional promise to “zap parasites” (Hulda Clark’s unique spin on these devices, in which she claims that all cancer, AIDS, and most other diseases are due to a liver fluke, which her device supposedly “zaps.” Like these devices, the maker of GAC promises vague “immune system boosts,” but with the added twist that he claims that all disease is due to original sin (along, apparently, with the conventional alt-med “toxins,” diminished qi, and uncharacterized immune dysfunction). Amusingly, the Monsignor who created this device also disses Hulda Clark and advocates the use of laetrile and Linus Pauling’s orthomolecular medicine. The main difference is that he claims to have received the design for the device from God through a dream.

A discussion of these various forms of quackery is beyond the scope of this post, and some of them have already been discussed before on this blog. such as Linus Pauling’s advocacy of vitamin C. Suffice it to say that it is quackery, with no basis in science. What caught my interest was a testimonial by a commenter on P.Z.’s blog. He was most unhappy at some of the snarky comments and decided to provide a very typical cancer testimonial for alt-med that I thought to be worth deconstructing as a learning exercise. It began with a discussion of the Royal Rife device, which, suffice it to say is also quackery, albeit a form of quackery that hasn’t much been discussed on SBM. (Hmmm. Perhaps some blog fodder for next week?) The commenter, going by the ‘nym “gp,” began:

The research of Royal Rife is largely obscured in mystery, and very few folks have been able to replicate his results based upon that secrecy. The work of Dr. Bob Beck on the other hand is well documented and with measurable results.

Actually, the reason that no one has been able to replicate the work of Royal Rife is because it’s pseudoscientific nonsense. Bob Beck’s protocol isn’t any better. In essence, it consists of what Beck calls “microcurrent” therapy, and a brief description of it should convince most readers of just what nonsense it is (although I do reserve the right to use it as more blog fodder in the future, as a detailed discussion may be worthwhile; perhaps a general post about a number of these devices):

The Bob Beck Protocol started out as an electromedicine treatment for AIDS / HIV, however, it has turned out to be a superb cancer treatment.

There is certainly no other electromedicine treatment for cancer that is anywhere near as effective as the Bob Beck Protocol. It is far better than any Rife Machine, far better than any Multi-Wave Oscillator (MWO), far better than anything Hulda Clark has out, and so on.

The reason the Bob Beck Protocol is so absolutely superior to other electromedicine treatments is that it is the direct result of an incredible discovery in medicine.

Two medical doctors, Dr. Kaali and Dr. Lyman, discovered, in 1990, that a small electric current could disable microbes from being able to multiply, thus rendering them harmless. It was, in fact, the greatest medical discovery in the history of medicine because virtually all diseases are caused by, or enhanced by, a microbe. Their discovery was a cure for almost every disease known to mankind.

A video can be found here, which postulates something called “blood electrification.”

A good rule of thumb, one that I have yet to find to have been wrong, is that, whenever someone says their device or treatment is a “cure for almost every disease known to mankind,” it’s quackery. Run, don’t walk, away from anyone telling you that. Moreover, when someone like Beck tells you that his therapy won’t work if you take any other therapy, be it conventional chemotherapy, surgery, and radiation, or even any other “alternative” therapy, that’s just icing on the cake for identifying quackery. In any case, that gp believes in Beck’s protocol so strongly should tell you what’s coming next, namely an anecdote:

With that said, my wife was diagnosed with invasive ductal carcinoma (3.5 cm tumor) last year with metastatic lymph node activity, the lay translation of which is terminal breast cancer that had spread to her lymph nodes.

Although I’m sorry that gp’s wife developed breast cancer, having just watched my mother-in-law die of the disease a mere three and a half weeks ago, my personal feelings won’t stop me from pointing out the misunderstanding of breast cancer here. Unless his wife had metastatic disease in distant sites other than the lymph nodes under her arms, she did not have “terminal” breast cancer. In fact, even if a lot of lymph nodes under her arm were positive for metastatic breast cancer, she would still be potentially curable. Granted, depending on the number of positive lymph nodes, gp’s wife could be as high as a stage IIIA or, if the primary tumor was considered inoperable due to extension to the chest wall, stage IIIB, but stage III breast cancer is still potentially curable. As I guide you through the rest of the testimonial, I’ll try to fill in what probably really happened based on educated guesses. You will see that what probably happened does not support the efficacy of the quackery pursued. But, before I do, let’s look at three questions in reading alt-med cancer testimonials that can, if answered properly, can be indicative that an “alternative” therapy might actually have value. These questions were provided by our ever-intrepid commenter and occasional gadfly here around SBM, the retired Australian cancer surgeon Peter Moran:

  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)

Thus far, the answer to question number one appears to be “yes.” However, I would say that Dr. Moran’s list is incomplete in that I would add to it: Was sufficient reliable information presented in the testimonial to allow me to do a reasonably accurate staging of the tumor? In other words, if a person giving a testimonial says that the cancer was “incurable” with conventional therapy, was it, in fact, incurable? In this case, as I pointed out before, we can answer fairly confidently that gp’s wife’s cancer was not incurable. It is possible, even likely, that it was a fairly nasty tumor (more on that later), but it does not appear to have been stage IV disease, because it’s a pretty safe bet that if it were gp would have pointed out that his wife had metastases to lung, liver, bone, or wherever, in order to emphasize the hopelessness of the situation.

Let’s continue with gp’s testimonial:

I interviewed and met with three separate cancer specialists including the head of oncology for a cancer research center in the top 10 worldwide; the answer to her cancer was an extensive regiment of cytotoxins followed by radiation, despite her heart tests which came back with less than 50% efficiency for her left ventricle.

Whether gp’s wife’s axillary lymph nodes were positive or not, a 3.5 cm primary tumor would mandate at least some chemotherapy; positive lymph nodes would indicate the need for a longer and more intensive course of chemotherapy. In addition, radiation therapy is standard of care for any form of breast-conserving therapy. As I tell patients, if your breast stays in place, you need radiation. There are only a few exceptions. Without it, the risk of local recurrence can be as high as 30% or slightly more. Of course, as I’ve pointed out before, this very fact (namely that about 2/3 or more of women who undergo lumpectomy will do fine without radiation) often leads to other testimonials by women who have had a lumpectomy, eschewed radiation in favor of some alternative woo or other, and and then attributed their doing well not to the surgery, but rather to the woo. The same goes for chemotherapy. Remember, surgery is the main curative modality in breast cancer that is curable. Radiation is the icing on the cake that sharply decreases the risk of local recurrence, and chemotherapy reduces the risk of distant recurrence; i.e., recurrence outside of the breast or axillary lymph nodes, such as in the bone, liver, lung, or other organs. Finally, gp’s comment about his wife having “less than 50% efficiency” refers to a MUGA scan, which is indicated before the use of Adriamycin-based chemotherapy regimens, which can indeed injure the heart. Radiation to the left breast or chest wall can also “leak” and injure the heart, but the risk is very small with modern techniques of planning and advanced equipment aiming the beam, which now allow for very accurate radiation dosage, with little or no collateral damage.Clearly, Mrs. gp’s oncologists thought that her cardiac reserve was adequate to handle it.

gp continues:

I personally challenged each of her oncologists to a simple question and answer session about the mortality rates associated with chemotherapy used in conjunction with radiation; they were only able to cite the statistics published by the American Cancer Society which are now deceptively reported within a 5 year window (if there is no reoccurance of cancer within 5 calendar years, the patient is cured of cancer; if there is a reocurrance after the 5 year window, they are reclassified as a new patient). Her oncologists had not one suggestion for a change in her diet, a change in aerobic activity, or any solution other than the administration of very expensive cytotoxins followed by a 30 day bout of nuclear medicine, to further suppress and completely annihilate her immune system to get the cancer out of her. Napalm for humans.

The reason doctors have no suggestions other than generic suggestions is because there is no evidence that specific dietary interventions can treat an established cancer. There is, of course, that diet can influence our risk for cancer, and there is even weak and controversial evidence that an extremely low fat diet might be able to slow the progression of very early stage prostate cancer with favorable histology, but that is a far cry from treating an established cancer. Moreover, one can’t help but note that gp is parroting the usual alt-med tropes about cancer therapy, including the classic “poisoning” and “burning” (although I’ve never seen anyone refer to it as “napalm for humans” before), in addition to the exaggerated fears of “annihilating” the immune system. In fact, the immune system recovers quite well from breast cancer chemotherapy.

As for gp’s claim that the American Cancer Society has somehow jiggered its statistics on survival, there’s no other way to put it, I’m afraid, other than that it’s nonsense. It is true that about five years ago the ACS changed its statistical models for estimating the number of cancer cases and cancer deaths; this was done to reflect more accurately the incidence and number of deaths using the SEER database. It should also be remembered that the ACS state-by-state reporting of cancer incidence and deaths is not intended to estimate how successful treatments are, because it doesn’t break the data down stage by stage, treatment by treatment, but rather only by tumor type. Results of randomized clinical trials and other studies looking at stage-by-stage survival rates are required for this purpose, and such studies, I assure gp, do not count recurrences after 5 years of breast cancer as new cancers. Breast cancer is well known as a cancer that has a propensity to recur later than five years, which is why survival rates for breast cancer are often reported as ten year survivals. Indeed, from the landmark clinical trials in the 1970s and 1980s by the NSABP that now have 25 and 30 year survival rates reported. The literature on this subject is long and deep, and, even if the ACS were “jiggering” its figures in the way described by gp, it would not affect that literature.

The story continues:

The cancer research center (Moffitt Research here in Tampa) has a McDonald’s in the lobby. I had a Big and Tasty with a large Coke each day while she was in the hospital recovering from the bi-lateral mastectomy.

From this we learn that gp’s wife had a bilateral mastectomy. It is not mentioned whether she also underwent an axillary dissection on the side of the tumor, but presumably she did if she had a positive lymph node there. No competent breast surgeon would be willing to do just a mastectomy under those circumstances without a fight. Indeed, if Mrs. gp had stage IV disease, it is also very highly unlikely that any surgeon would want to perform a bilateral mastectomy on her right off the bat. It is true that there is retrospective evidence suggesting that removing the primary tumor in patients with metastatic disease might be helpful in terms of prolonging survival, but that’s only in patients who have stable disease after chemotherapy. Be that as it may, assuming Mrs. pg had a modified radical mastectomy on the side of the tumor (includes the lymph nodes) the answer to Peter’s second question is: Yes, the tumor did go away. You can’t make a non-stage IV cancer go away any more effectively than to remove both breasts. However, the tumor went away before any alternative therapy was tried, thanks to a trusty neighborhood surgical oncologist at Moffit.

It would be interesting to know whether his wife chose a bilateral mastectomy. Personally, as a breast surgeon, I am very reluctant to perform a mastectomy on the other side unless (1) there is another cancer there (which gp didn’t mention; so I presume that there wasn’t) or (2) a documented mutation in a gene like BRCA1 that predisposes to hereditary cancer. I admit that these days I’m a bit of a dinosaur that way, because increasingly women are demanding bilateral mastectomies, even though there is no evidence that their routine use improves survival.

In any case, that Mrs. gp required a mastectomy implies that her surgeon judged her tumor too large to perform a lumpectomy or partial mastectomy with a decent cosmetic result. Another interesting wrinkle is that these days giving chemotherapy before surgery can often shrink such tumors to the size where lumpectomy is possible, allowing preservation of the breast. However, for this approach to work, the woman has to be willing to undergo both chemotherapy and radiation, and Mrs. gp was unwilling to accept either:

We then opted to decline chemotherapy (you will be dead within a year) as well as decline radiation (seriously, you are really dead within a year now, take the chemo and radiation you crazy person with cancer) and instead began the Beck Protocol based on Dr. Robert Beck’s open source schematics (the “quackery” referenced in the previous two posts) which he published in 2002, originally as a way of bulking up the immune system of individuals diagnosed with HIV.

I don’t know where gp and his wife got the idea that chemotherapy and radiation would lead his wife to be dead within a year. Most breast cancers, even metastatic ones, don’t necessarily lead to death within a year. Median survival is in general over a year; so a significant number of women with metasatic breast cancer live longer than a year. Some can even live several years. As for the Beck protocol, gp describes it thusly:

For the ozone generation component we opted for a clinical grade ozone generator and oxygen concentrator purchased from Longevity Resources; cancer itself is an anaerobic function so increasing blood/oxygen saturation is a key component to fighting cancer of any type. Ozone is used primarily in Europe as a disinfectant and has only recently been adopted by U.S. hospitals to disinfect operating rooms, burn units etc.

For the blood electrification equipment we went with a vendor that replicated the work of Dr. Bob Beck’s open source schematics and in accordance with the research of Dr. Kaali and Dr. Lyman’s report from 1990, which is now the core focus of electroporation equipment (that curiously also uses the same square wave advocated by Rife’s research) now approved by the FDA and in clinical trials with cancer research centers here in the U.S. The unit I bought for the blood electrification is non-FDA approved, built to spec as described by Kaali/Lyman/Beck.

For the magnetic coil pulser I ordered a unit from Australia with measurable output according to the Beck Protocol, non FDA approved.

For the silver component we went with 2 gallons of medical grade collodial silver from a supplier here in the U.S. with a lab certified 20 ppm content (Utopia Silver, http://www.utopiasilver.com).

We also used a daily dosage of 60 bitter apricot pits initially (now a 20 pit per day maintenance routine) due to high concentrations of Laetrille/B17 (illegal for resale in the U.S. per the good folks at the FDA).

My goodness, the Beck protocol is a panoply of cancer quackery! It’s all there, even laetrile! Of course, there is one bit of possible non-woo in with all the woo, and that’s the electroporation equipment. Electroporation is sometimes used to potentiate DNA vaccines, to increase the uptake into the skeletal muscle cells of the plasmid DNA being used to immunize the patient. It does not surprise me that the device gp picked up is not FDA-approved. As for colloidal silver, apparently gp is unconcerned with what I like to call the “Blue Man syndrome” but what is more commonly called agyria that can occur as a result of its use.

Finally, let me just address the ozone issue. Apparently the idea is to increase the blood saturation of oxygen somehow by increasing the amount of oxygen dissolved in the blood. The problem is that the vast majority of oxygen in the blood is bound to the hemoglobin in the red blood cells. Only a small minority of the oxygen in the blood is dissolved. Moreover, the oxygen binding curve for hemoglobin is saturable; if the hemoglobin is greater than 90% saturated (as it is in most people at sea level or near sea level), it’s impossible to increase the oxygen content of the blood by more than a couple of percent by adding more oxygen. Worse, ozone is a very strong oxidant. Did it ever occur to gp that there’s a reason it’s used as a disinfectant? It kills bacteria, but its oxydizing properties do exactly the same thing to normal cells.

So how did Mrs. gp do? Let’s see:

Her initial tumor markers were off the charts in all areas; after three months of treatment and her surgery, she scores 1 out of 40 for her tumor markers – and she refused chemotherapy or radiation.

We use http://www.caprofile.net/ for bi-monthly blood tests that show her progress in terms of her cancer markers and the other empirical indicators of cancer (PHI enzyme levels, hCG levels, etc). We have to pay the $300 for this test out of pocket as insurance will not cover it; the blood tests from her oncologist (covered by insurance and 10X the costs) don’t even show the basic levels associated with cancer such as PHI and hCG.

Note what he says: After the surgery. Of course her tumor markers fell. Remove the tumor, and the tumor markers will usually fall.

Now’s as good a time as any to answer Peter’s third question, and the answer is a resounding “yes.” She did receive other therapy. She received the primary therapy for her tumor. In fact she received highly aggressive surgical therapy for her tumor. Once again, I reiterate: Chemotherapy and radiation in this setting are adjuvant therapies. Surgery is the primary therapy, and they are useful for decreasing the risk of cancer recurrence. Back in the “old days” before there were effective adjuvant chemotherapy or radiation therapy regimens, surgery was the only treatment for breast cancer, even relatively advanced tumors. The survival rate wasn’t fantastic, but a significant minority of women were cured of their cancers by surgery alone and still are. It is highly probable that gp’s wife falls into that category, although, at the risk of being pessimistic, I have to point out that we don’t know how far out she is from her surgery. She’s still not out of the woods yet by any means. I wish her only the best, but really wish she had increased her odds of overcoming breast cancer by accepting conventional treatment.

Finally, there is the issue of all those “tumor markers.” The following of tumor markers for breast cancer is a complicated and controversial minefield. In fact, there are a number of tumor markers for breast cancer of wildly varying validity and reliability, the vast majority of which aren’t much good. Indeed, breast cancer tumor markers are in general not closely followed after primary surgery for breast cancer; rather they are sometimes followed in the case of advanced disease. Some oncologists I’ve known don’t follow them at all, thinking them to be a waste of time. Unfortunately, those of us who take care of breast cancer don’t have a marker as reliable as CEA is for colon cancer and would very much love to have one whose high degree of utility is science- and evidence-based. There’s a reason why insurance companies don’t pay for that many of them, and I can only guess at what other dubious markers gp was paying quacks to measure.

No testimonial, of course, would be complete without an appeal to emotion and conspiracy:

Simple, rational logic dictates that cellular toxins of any sort destroy the body’s ability to fight cancer, as does radiation.

Simple, rational logic also dictates that nuclear medicine is proven to cause additional forms of cancer and debilitating diseases, all of which are considered by modern day oncology as “effective” means of combating metastatic cancer which is now at epidemic levels worldwide.

Simple, rational logic says that the body’s immune system is the first line of defense against any form of life threatening illness, and bolstering – not destroying – the body’s immune system is the most effective way of combating cancer of any sort.

Further, Big Pharma and their minions at the FDA would rather allow corporate profit motives to drive cancer research, while only treating the symptoms of cancer and never the root causes of what causes cancer in the first place.

“Simple, rational logic” is, alas, all too often only the former of the two based on a profound misunderstanding of biology. It is true that chemotherapy is toxic, but the point is that it’s more toxic to cancer cells that are rapidly dividing than it is to normal cells. The same thing is true of radiation when administered correctly. Indeed, the concept of “fractionating” radiation (i.e., giving it in small daily doses over 30 or so fractions, which is what is done with breast cancer) is predicated on the fact that normal cells can repair their DNA after such low doses but cancer cells can’t. The cancer cells thus accumulate damage, while normal cells repair themselves during the “rest” periods. Moreover, although it is true that secondary malignancies are a risk with radiation therapy and chemotherapy, numerous studies have been done on this issue, and it turns out that the risk of these secondary malignancies is far outweighed by the therapeutic benefit of the chemotherapy. The problem with so many mavens of alt-med is that they are like antivaccinationists in that they seem to think that there must be medical interventions with absolutely zero risk. All medical treatment is composed of a risk-benefit analysis. For a disease like cancer, which has the potential to kill, more risks are considered acceptable to wipe it out.

gp’s testimonial illustrates very well the inherently deceptive nature of the vast majority of alt-med cancer testimonials. This deception is rarely intentional; rather, far more commonly it is the result of a poor understanding of cancer, how it’s treated, its prognosis, and the extreme variability of its course. Indeed, breast cancer is a disease with a particularly variable course, which, when coupled with its high degree of prevalence (it’s the most common cancer diagnosed in women), virtually guarantees large numbers of women who are “outliers,” doing much better than expected. Some of these women will take alternative medicine and attribute their good fortune to alternative medicine rather than their tumor biology. The reason that these testimonials often sound convincing is that the people listening to them are not physicians and do not know enough about the expected natural course of a specific cancer, how that cancer is normally treated. Another common misunderstanding is what the role of chemotherapy and radiation is for treating solid tumors, for which the primary treatment is almost always surgical and for which surgery can often be curative.

Finally, not how gp claims that “conventional medicine” treats “only the symptoms” of cancer rather than the “root cause.” This is a frequently claim made by alt-med advocates not just about cancer but about virtually all human disease. It is also one I consider most ironic, given that scientific medicine actually does try to discover the actual cause of cancer and treat it. It looks at genes, the functions of the proteins they express, and how the environment interacts with them. They study tumor biology and how seemingly “normal” stroma can influence the growth of tumors for good or ill. Science modifies its views in response to new data, observation, and experiments. The contrast with “alternative” medicine could not be more stark, where we false causes of cancer are identified and targeted: Liver flukes causing “all cancer”; vague disorders in unmeasurable “life energy”; unnamed “toxins”; uncharacterized immune system “weakness”; or, my favorite when it comes to inanity, the claim that cancer is not a disease at all, but rather a manifestation of internal conflict.

Unfortunately, if gp or his wife sees this, no doubt they will see it as yet another example of a close-minded physician. However, I am a physician who sincerely hopes that Mrs. gp does not become like some women described by Peter Moran:

The studies <1,2>  that predict a favourable outcome for many with lumpectomy alone predict misery for others.  The women on the wrong side of the gamble, those trying to cope with  persistent cancer  either eventually have to accept further medical care, usually mastectomy, or can be observed making  fleeting visits  to their old Internet stamping grounds,  asking for advice  on what to do about the pain or smelly discharge, or regarding what last-ditch methods they should try, having by now used most of the treatments on offer…

Amazingly, some of these unfortunate women still fly the “alternative” flag, remaining proud that they have have “treated” their breast cancer “without using any conventional methods”.  This is a tribute to the occasional success of malicious propaganda  that claims, despite mountains of evidence to the contrary, that medical treatment of cancer doesn’t work or makes things worse.   The truth is that the prognosis for cure of breast cancer is very good, especially if found early via screening.   In fact,  even when all stages of the disease are included [4] 80% of  women with breast cancer survive for ten years, with most of these being cured permanently.

I’m also reminded that I’ve just returned home from a meeting in Phoenix, where I met a former fellow from my old program who now practices in nearby Scottsdale. She happens to have read this blog, and our discussion turned to the fact that Arizona is ground zero for a whole lot of woo, which led her to describe a couple of patients whom she’s seen in just a year and a half of practice with advanced, fungating tumors that had been treated by, as she put it, “naturopaths putting various salves on them.” I concluded that I would have a hard time practicing in Arizona, as in eight and a half years in New Jersey I had never seen such a case. I had seen neglected tumors due to denial, but I had never personally seen one treated by a naturopath. I was also reminded yet again that this sort of quackery kills.

If you don’t believe me, go back and read this post.

Posted in: Cancer, Health Fraud, Science and Medicine

Leave a Comment (27) ↓

27 thoughts on “An all-too-common breast cancer testimonial for “alternative medicine”

  1. Akheloios says:

    We then opted to decline chemotherapy (you will be dead within a year) as well as decline radiation (seriously, you are really dead within a year now, take the chemo and radiation you crazy person with cancer)

    It reads to me that she was offered Chemotherapy, refused it, then was advised that would probably well be dead within the year without the Chemotherapy. She was then offered radiation, which she also refused and was advised it was now certain that she would be dead within a year.

    When his wife had refused both the Chemotherapy and the Radiation, he believed that his wife was the one that was considered crazy by the Oncologist, for refusing the conventional therapy.

    He doesn’t make it easy to believe his description of the situation as he seems so misinformed about cancer to begin with, but I don’t think he meant to insult anyone else in that passage or that he thought that Chemotherapy or Radiation therapy would kill his wife within the year. More that he felt that they were being pressured into Chemotherapy and Radiation therapy against their wishes and simply said ‘no’.

  2. Khym Chanur says:

    For the ozone generation component we opted for a clinical grade ozone generator and oxygen concentrator purchased from Longevity Resources; cancer itself is an anaerobic function so increasing blood/oxygen saturation is a key component to fighting cancer of any type.

    I’m not a medical doctor at all, much less an oncologist, but:

    1) Wouldn’t treating cancer with ozone be a form of chemotherapy, a modality they were trying to avoid?

    2) Couldn’t increased oxygen concentration be more easily and less intrusively increased by purposeful and controlled hyperventilation?

  3. rnewson says:

    Great post but I think you misread this portion, “gp” seems, to me, to be reiterating what doctors (those evil, evil doctors) said to him when he and his wife rejected conventional therapy. i.e,

    “We then opted to decline chemotherapy (“you will be dead within a year”[, they said]) as well as decline radiation (“seriously, you are really dead within a year now, take the chemo and radiation you crazy person with cancer”[, says nasty doctor])”.

    rn.

  4. David Gorski says:

    Hmmmm. It’s possible, even likely, that I misread this article in the manner stated, but I simply decided to take gp at his word. Also, although I suppose it’s possible that his wife’s physicians tried to scare her into taking chemotherapy by using phrases such as “you’ll be dead in a year,” they were at Moffit, and to me that doesn’t ring true. You usually won’t find academic surgeons and oncologists using such fear-mongering terms, and, in fact, unless cancer is widely metastatic it is unlikely that oncologists would tell a patient that she would probably be “dead within a year” because, quite simply, the median survival is more than a year, even for most metastatic breast cancer. For example, at the two large academic cancer centers I’ve worked at, what we would usually say to a patient refusing therapy is that by doing so she is significantly decreasing her chances of beating the disease and is significantly more likely to die from her disease.

    I’ve never heard of an academic clinician at a major cancer institute telling a patient like this that she’ll be dead within a year. That doesn’t mean it doesn’t happen or that it didn’t happen in this case, just that the culture in the cancer centers where I’ve practiced is not such that using such apocalyptic terms would be acceptable, and that’s usually not the way academic oncologists talk to patients.

    In any case, this is a very minor point in the post compared to the rest. If people harp on it, I will simply delete or change that part of the post in order to keep it from being a distraction to the main points of the post. I don’t want nitpicking to take over this thread. In fact, I already deleted one sentence.

  5. rnewson says:

    Fair comment, I was only attempting to clarify something that appeared to puzzle you. I concede it’s a minor point, and I don’t believe that any of the doctors actually said those things (or, at least, not so bluntly).

    It’s another example of the “us vs. them” persecution complex that I’ve read in many other alt-med cancer testimonials. I thought it was an interesting observation, though I see someone beat me to it anyway.

  6. overshoot says:

    which led her to describe a couple of patients whom she’s seen in just a year and a half of practice with advanced, fungating tumors that had been treated by, as she put it, “naturopaths putting various salves on them.

    Too bad there isn’t a system for reporting those cases, though. Until the body count for woo is actually tracked, they can continue their argumentum ad ignoratum.

  7. Dacks says:

    Thank you for a wonderful post that, while dissecting a typical alt-med anecdote also provided some interesting tidbits about the actual treatment options for breast cancer. This kind of information is useful for helping family members and friends resist the lure of easy (and ineffective) cancer cures.

  8. David Gorski says:

    It’s another example of the “us vs. them” persecution complex that I’ve read in many other alt-med cancer testimonials.

    True, enough. There was plenty of that in gp’s testimonial, along with the usual “doctors make money keeping you sick” sorts of attacks.

  9. Dr Benway says:

    Anecdotal personal testimony is used in healthcare debates because people are ignorant of scientific standards, yes. But more importantly, anecdotes are used because they are politically effective.

    Here’s what Senator Harkin said to the Iowa Chiropractic Society:

    …he presented a modified “top-7″ list of how DCs should go about educating members of Congress and other decision makers about their profession. We think that advice is worth wider dissemination:

    1. Personalize the issue and share your story.

    I’m not opposed to personal testimony, merely the misuse of it, which we might term “anecdotalism.” I’d define anecdotalism as, “asserting as fact some correlation or cause-and-effect principle to a group of individuals on the basis of personal experience.”

    I’d like to transform Harkin’s effective political strategy into an ineffective strategy by making anecdotalism socially uncool. Example of a snarky quip to this effect:

    “If anecdotes now count as good science, we’re going to be spending a lot of federal funds on E-meters and cow urine over the coming years.”

  10. Dr Benway says:

    Oh BTW, I think Senator Harkin needs to go. He’s not competent to chair a committee concerned with writing American healthcare policy.

    Harkin has had many years to figure out how medical science works, so there’s no excuse for his silly remark about NCCAM’s failure to “approve” CAM therapies. Prolonged ignorance on the basics = not teachable.

    I have no idea how to make an effective stink, however, as I’m basically an apolitical being.

  11. yeahsurewhatever says:

    Wouldn’t it be nice if more quack interventions caused argyria- or chrysiasis-like permanent skin discoloration? I mean, if there were no risk of heavy metal toxicity.

    How much of the world do you think would end up smurf-toned if that were the case? Nearly all of it?

    It would be even nicer still if the discoloration went to the provider, rather than the recipient, of the quack intervention. Then the Rose Jacobses of the world wouldn’t have to endure the ridicule for what their physicians did.

  12. DevoutCatalyst says:

    “If anecdotes now count as good science, we’re going to be spending a lot of federal funds on E-meters and cow urine over the coming years.”

    And drinking more of our own urine.

    Bottoms up!

  13. Zarathrustra says:

    First off, I apologise up front that I haven’t read any of the earlier blogs; my excuse is that I’ve just stumbled upon your blog and, as an interested party (metastatic bladder cancer), felt it’d be nice to contribute my two-penneth anyway.

    Whilst your arguments seem often reasonable, I fear there’s too much reliance on orthodoxy and too little time for CAM – which you seem to equate with quackery generally (and which I acknowledge there is some; but also genuine sincere beliefs that may be as false – as are many of those held by the medical profession).

    As I understand it, the majority of medical practices have little or no EBM behind them – just tradition; so in that the professionals are no better than the CAM people. It should also be noted that about half the CAM practitioners are gps; and that over half of gps have referred patients to CAM practitioners – presumably for good reasons.

    To ‘science’. I am a scientist, and so am aware that there is more to science than the medical gold standard of double-blind trials – good though that can be. Anecdotal evidence is a good and necessary prelude to testable theories. But the hall-mark of science is whether there is evidence for the theory, even if the causal chain is unclear – but better if it is so; but often unknown. Copernicus didn’t know how the earth revolved around the sun, but the evidence was for it.

    To CAM. There is a lot of scientific evidence for many of the treatments – Bork’s “Natural Compounds in Cancer Therapy” is a good starting point. Others are “Cancer: The complete recovery guide” by Jonathan Chamberlain, “Definitive Guide to Cancer” by Alschuler & Gazella, and “Spontaneous Regression” by MacAdam. But there is a mass of other research studies showing success at least as good as orthodox medicine.

    It is to be noted that cancer survival rates have hardly changed for most cancers in decades; and what improvements there are are slight, confused by earlier detection. That only about 2% of all patients treated with chemo are alive after 5 years (and that includes those that have a high remission/cure rate). Some cancers have gotten worse survival rate-wise (bladder being one of them), despite reputed expensive improvements in treatments.

    It is a condemnation of the medical profession that little research is done into CAM (not unreasonably, the pharmaceutical companies aren’t interested as there’s little or no profit it them; but for the governments to not do so is scandalous).

    What is one to do when one’s first three medicos – the urological surgeon and two oncologists – say you’ve got only weeks to live; well, OK, maybe a year; OK maybe two years; but there’s nothing we can do? CAM? Rubbish! Cancer markers? What are they? (I’m not making this up). etc.

    There is an increasingly acknowledgment by the medicos that nutrition and supplements are beneficial; at the least support orthodox treatments; and sometimes seem to work when orthodox treatments are considered useless.

    Note should be made of the fact that what is unorthodox in one country may be quite normal in another – with no worse, perhaps better, survival rates.

  14. Scepticon says:

    Would you mind commenting on the claim that “Cancer is Anaerobic” and so oxygenating the blood hurts cancer. I was given to believe that cancers manage to grow to large sizes due to the ability of some to promote angiogenesis, ie blood vessel growth.
    In which case they are actually oxygenating themselves with only beneficial (to the cancer) results. The only sites I could find that promoted the Cancers are anaerobic view were heavily suspicious quack looking pages.

  15. David Gorski says:

    Actually, we SBM bloggers have addressed many of these canards before. Let’s begin.

    As I understand it, the majority of medical practices have little or no EBM behind them – just tradition; so in that the professionals are no better than the CAM people.

    Nope. Try again.

    It should also be noted that about half the CAM practitioners are gps; and that over half of gps have referred patients to CAM practitioners – presumably for good reasons.

    Why “presumably”?

    To ’science’. I am a scientist, and so am aware that there is more to science than the medical gold standard of double-blind trials – good though that can be. Anecdotal evidence is a good and necessary prelude to testable theories. But the hall-mark of science is whether there is evidence for the theory, even if the causal chain is unclear – but better if it is so; but often unknown.

    Too bad for the vast majority of CAM therapies, there isn’t even evidence that they work any better than a placebo. However, it’s not as though we haven’t written about the proper role of anecdotes in science-based medicine before. See:

    The Role of Anecdotes in Science-Based Medicine
    A Budget of Anecdotes

    To CAM. There is a lot of scientific evidence for many of the treatments – Bork’s “Natural Compounds in Cancer Therapy” is a good starting point.

    Natural compound pharmacology is known as pharmacognosy and is not “alternative.” It’s been a science-based medical practice for centuries and has resulted in many “conventional” therapeutic drugs. Just ask David Kroll, one of our bloggers:

    A natural product of his environment
    Natural versus “natural” in CAMworld

    Others are “Cancer: The complete recovery guide” by Jonathan Chamberlain, “Definitive Guide to Cancer” by Alschuler & Gazella, and “Spontaneous Regression” by MacAdam. But there is a mass of other research studies showing success at least as good as orthodox medicine.

    That is simply not true. If there is a “mass of other research studies” showing success rates at least as good as orthodox medicine, I haven’t been able to find them, and, believe me, since becoming interested in cancer quackery, I’ve looked. Feel free to try to educate me, but make sure you’re referring to the peer-reviewed literature.

    It is to be noted that cancer survival rates have hardly changed for most cancers in decades; and what improvements there are are slight, confused by earlier detection. That only about 2% of all patients treated with chemo are alive after 5 years (and that includes those that have a high remission/cure rate).

    Not true. I think this is the paper to which you’re referring:

    G Morgan, Ward R, and Barton M. (2004). The Contribution of Cytotoxic Chemotherapy to 5-year Survival in Adult Malignancies. Clin Oncol (R Coll Radiol) 16:549-560.

    It’s not a very good paper, but it is frequently cited by alt-med websites because it claims to have found that only 2.3% additional survival benefit can be attributed to cytotoxic chemotherapy. Unfortunately, it seemed custom-designed to minimize the effect of cytotoxic chemotherapy on cancer therapy. Indeed, I highly recommend the rebuttal published by Mileschkin et al. For instance, the authors used only 5 year survivals, when the survival curves separate more at 10 years for many cancers; they left out leukemias, which are the cancers most commonly (and most successfully) treated by chemotherapy, etc., etc.

    As for the rates of cancer survival not improving, that is true for some cancers, not true for others. We’ve done well with some cancers, not as well with others. Also, this view neglects the improvements in surgery that have made cancer operations much less invasive and disfiguring, which vastly improve quality of life with the same survival rates, not to mention less harsh chemotherapy regimens and biological therapies.

    It is a condemnation of the medical profession that little research is done into CAM (not unreasonably, the pharmaceutical companies aren’t interested as there’s little or no profit it them; but for the governments to not do so is scandalous).

    Same old, same old. Really, can’t CAM defenders come up with a new spiel?

    What is one to do when one’s first three medicos – the urological surgeon and two oncologists – say you’ve got only weeks to live; well, OK, maybe a year; OK maybe two years; but there’s nothing we can do? CAM? Rubbish! Cancer markers? What are they? (I’m not making this up). etc.

    We’re not telling you what to do. We’re trying to inform you of the real evidence behind the claims that cancer quacks make–which is almost always slim, none, or even contradictory to their claims. What you do with the information is up to you, but my advice to cancer patients in general is not to waste their money.

    There is an increasingly acknowledgment by the medicos that nutrition and supplements are beneficial; at the least support orthodox treatments; and sometimes seem to work when orthodox treatments are considered useless.

    Uh, no. There isn’t. There is an increasing recognition that perhaps diet has been undervalued, but there is no good evidence that diet works when “orthodox” treatments are considered worthless. Again, I’ve looked for it; I haven’t found it.

    Note should be made of the fact that what is unorthodox in one country may be quite normal in another – with no worse, perhaps better, survival rates.

    Irrelevant, because regional variation in cancer treatments are in general variations between two or more science-based treatments. For instance, for adjuvant therapy of breast cancer, European physicians tend to prefer a regimen that goes by the initials of CMF. In the US, it’s AC followed by T.

    In any case, your arguments sound as though they were cribbed from various sections of Whale.to or NaturalNews.com. Sorry, but I call ‘em like I see ‘em.

  16. pmoran says:

    “It is a condemnation of the medical profession that little research is done into CAM — .”

    How so? It should be easy with present technology, even with simple photography, to show that a treatment is regularly curing cancer, or inducing remission. Yet we are constantly required to give the benefit of the doubt in small (and large)ways whenever CAM provides its “best cases” and testimonials.

    Why so? Why cannot those with such claims take simple, obvious, NECESSARY steps to advance their claims? Why aren’t they pouncing on those patients who might make for the best test of their methods and documenting them especially carefully, so that there can later be no argument as to what happened?

    For example, the clearly visible cancers illustrated at the links below are examples of ones regularly being treated by alternative practitioners. But for some peculiar reason the methods don’t seem to work on them — at least, we are never shown them doing so. How peculiar! Why should they work on other cancers but not ones more critical to support of the claim?

    The truth must be that the cancer quack already KNOWS that his methods don’t work if used alone on established cancer, and he isn’t particulalrly interested in everyone else finding that out. Regard this as a direct challenge to anyone who thinks otherwise.

    The cancers –(if the links don’t work the pictures are also on my web site http://www.cancerwatcher.com )–

    http://www.users.on.net/~pmoran/images/Tom%205,6-5small.jpg

    http://www.users.on.net/~pmoran/images/Melphoto2.jpg

    http://www.vci.org/breastcancer1.htm

  17. pmoran says:

    The bottom two links work and will give you the idea.

  18. Dr Benway says:

    And drinking more of our own urine.

    Precisely.

    What fires together wires together.

    “CAM” and “urine” in the same sentence as often as possible.

  19. Dr Benway says:

    blockquote fail

  20. pmoran says:

    Thankyou, David, for looking at this testimonial in depth rather than lazily dismissing it as “just anecdote” as some skeptics are inclined to do.

    Testimonial is not “just anecdote” where it matters — these personal fables sustain the entire alternative cancer industry. Yet almost invariably they can be shown to be drawing false conclusions, even from the skimpy information typically supplied.

    Conversely sound semi-anecdotal material in the form of quality case reports is the way forward for any who sincerely believe they have a useful cancer treatment. Many types of cancer are predictable enough for each case to act as its own “control”. They can constitute a clinical trial of one, so long as no other treatment influences are involved, and routine standards of patient documentation applied.

    Single cases cannot prove much, of course, but the typical alternative cancer cure claim means that quality cases should be being produced with great regularity. They aren’t. I have been looking for them for about fifteen years now.

  21. Jurjen S. says:

    Quoth “gp”:

    Simple, rational logic also dictates that nuclear medicine is proven to cause additional forms of cancer and debilitating diseases [...]

    I don’t have any background in “hard” physical sciences beyond my secondary education, but I recognize crap argumentation when I see it. In this particular instance, “pg” is subscribing to what Terry Pratchett has called “the College of It Stands To Reason.” Abstract reasoning (i.e. “simple, rational logic”) may allow one to formulate to a hypothesis, but without empirical evidence, all you have is just that: a hypothesis. And a hypothesis is not evidence, much less proof.

    With regard to chemotherapy, I hadn’t thought about it much until the father of a close friend of mine was diagnosed with cancer (I don’t recall which kind), about ten years ago. My friend’s father was living–and being treated–in Brazil (where he happened to be living), and my friend came back from visiting and described the process thus (with some possible paraphrasing): “chemo literally poisons you to within an inch of your life, and if all goes well, that’s enough to kill the cancer, but not you.” As it was, his father did die, but the treatment probably gave him a few more months than he would otherwise have had.

    My own father was diagnosed with chronic myelogenous leukemia in October 2004. Luckily for him, they caught it early, and Glivec had just come out that year. As of last year, the CML was in total remission, not a single cell left in his body. Admittedly, the Glivec’s taking a toll on his health, and my mother worries about how long he’ll last, but it’s already longer than he would have without the Glivec. Which is good enough for me.

  22. Fifi says:

    Anecdotes may not be evidence but they’re a highly effective way to transfer information between humans. We use storytelling to make sense of, and to order, our world (and to remember information). We’ve evolved to be meaning seekers and story tellers (the story being a way to transfer meaning/information) so it’s quite normal that we’d be more at ease with anecdotes that contextualize and personalize information so it applies to us (if not directly then as a potential, empathy being part of what makes it possible to put ourselves in the anecdotal position).

    Good science writers and educators make their subject/information accessible by providing narrative (and anecdotes) that contextualize the information in a personal way that we are given access to via the story/anecdote. (Think Oliver Sacks for a great example.) The aim is to emotionally engage us because we all remember more when there’s emotion involved. This is why presenting cold facts next to warming anecdotes is a sure fire communications loser, particularly if one gets angry that the cold facts and logic aren’t trumping the emotional warmth and attractiveness of an anecdote or narrative. SCAM is very attractive to people because it’s all about them and their narrative. Add to this that having a frightening disease or medical condition disrupts our personal narratives to beging with and you may be able to see who strong the lure of a soothing and heroic personal narrative in the face of disease and death can be for some people. I suspect it’s one reason the mythological and religious aspects of many sCAM treatments is so powerful a lure for some people (and the communal when it involves becoming part of a community).

  23. Fifi says:

    For instance, the What’s the Harm site is more effective for making people think twice about sCAM than all kinds of data from experts.

  24. pmoran says:

    “Anecdotes may not be evidence — ”

    They are always evidence of SOMETHING, while offering extremely variable and often zero support for the claim being advanced. The degree of support will depend among other things upon the level of detail, the reliability that can be credited to the observer, and most importantly, the clinical context.

    I am sure that if we had a trusted colleague who found that a reasonably plausible treatment made a normally intractable cancer to disappear, we would be prepared to try it out ourselves. But we would be highly skeptical if the same person made much of the fact that they felt better after treating a placebo responsive and self-limiting complaint.

    By “evidence of something”, I refer to the fact that alternative cancer cure testimonials usually don’t supply reliable information about the treatment used, but they do reveal much concerning the trustworthiness and medical knowledge of their authors and, more importantly, of the quacks who use testimonials of abysmal quality to promote their wares!

    It can save a lot of time when confronted with a new cancer cure to first look at the testimonials. If they reveal the promoter of the treatment to have no idea what a good cancer cure should look like then there is no need to wade through the other drivel.

    I like to think that it may be possible to educate the public in some of the basics of assessing a testimonial, as David has done here. Unfortunately it requires considerable medical knowledge, although the non-professionals here may be able to advise whether they think such an approach may have merit.

  25. The Blind Watchmaker says:

    “I admit that these days I’m a bit of a dinosaur that way, because increasingly women are demanding bilateral mastectomies, even though there is no evidence that their routine use improves survival.”

    If using evidence to guide your recomendations make you a dinosaur, then we should all strive to be dinosaurs.

    This story reminds me of the Burzynski Clinic and his “anti-neoplastins”. I have a patient that is convinced that his brain tumor was cured by infusions of this purified urine”. He also had conventional treatment, but that doesn’t seem to matter. Now his father has prostate cancer and wants to be treated with antineoplastin rather than a curative surgery. He is relatively young. He wanted me to convince his insurance company that he needed to go to Texas to get this infused with “antineoplastin”. I informed him that I would not be able to do this and encouraged him to get real treatment. He got mad and hung up. Later, I got a dictation from his urologist. He is recovering from surgery nicely and his PSA is undetectable. $1 says that he is still angry that he didn’t get the quack urine infusions. At least he’s alive.

    http://www.quackwatch.com/01QuackeryRelatedTopics/Cancer/burzynski1.html

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