My Malignant Melanoma

A fellow cancer patient has written to ask me whether Bernie Siegel is Kosher or Quack. Let's have a look at what Quackwatch have to say:

"Various psychologic methods are being promoted to cancer patients as cures or adjuncts to other treatment. The techniques include imagery, visualization, meditation, progressive muscle relaxation, and various forms of psychotherapy. These techniques may reduce stress, alleviate depression, help control pain, and enhance patients' feelings of mastery and control. Individual and group support can have a positive impact on quality of life and overall attitude. A positive attitude may increase a patient's chance of surviving cancer by increasing compliance with proven treatment. However, it has not been demonstrated that emotions directly influence the course of the disease.

Bernie Siegel, M.D., author of "Love, Medicine & Miracles" and "Peace, Love & Healing", claims that "happy people generally don't get sick" and that "one's attitude toward oneself is the single most important factor in healing or staying well." Siegel also states that "a vigorous immune system can overcome cancer if it is not interfered with, and emotional growth toward greater self-acceptance and fulfilment helps keep the immune system strong." However, he has published no scientific study supporting these claims.

A 10-year study co-authored by Siegel found that 34 breast cancer patients participating in his program did not live longer after diagnosis than comparable non-participants. The program consisted of weekly peer support and family therapy, individual counselling, and the use of positive imagery. In November 1998, Siegel sent a series of email messages to Dr. Barrett (who runs Quackwatch) in which he said that the study bearing his name had been done by a student and was improperly designed."

I think it would be more than fair to say that Siegel is making claims with no scientific foundation, which fly in the face of even his own research. This seems less than kosher to me.

The idea that attitude affects the course of cancer has been scientifically discredited for some time. As cancerbacup point out, whilst it has no beneficial effect the pressure to be positive can become an additional burden for a cancer patient.

There is some evidence that stress might have an effect on cancer progression, but that pressuring people with less sunny coping styles to be positive is stressful for them. This article discusses the research in question.

And then there are all of the studies (including Dr. Siegel's own one) which do not show the effect. Every one of these is a nail in the coffin of claims that it exists. Like so much pseudoscience, the harder you look, the less you see it.

But of course there are people for whom a positive mental attitude works wonders. The loved ones of the cancer patient. Perhaps this is why some of them are such fierce advocates of the PMA. Bad enough that their loved one is possibly dying, but do they really have to go on about it? Let's tell them that if they don't be a bit more positive they'll die sooner, that'll shut them up!

I'm sure that like myself, most cancer patients would like to take as positive and hopeful an attitude to their cancer, its treatment and prognosis as they can from moment to moment, as dictated by their normal coping style.

I'm sure that like me, they are as nice as they can be under the circumstances, and put on as brave a face as they can to protect their loved ones to the extent allowed by the emotional and physical resources available to them.

Having cancer is however a bit of a downer at times. Telling us to pull ourselves together is even less useful than it would be for someone suffering from depression. Telling us to be a bit more cheery on pain of death is less useful still.

Coming back to Dr Siegel, not only has he not proven that his ideas or "treatment" prolongs life, he has not proven that it makes people happier. He has not proven any one of his claims, but has in fact apparently personally supervised someone who has disproved them. He has no evidence to support his claims, but does has evidence to show that his personally supervised programme is worse than useless. Yet he does not retract any of his claims.

Is this fraud or quackery? I suppose that that decision depends on the precise definition of the words you are employing. We can however be pretty clear that this is not acting as a scientist or as an effective medical practitioner.

Labels: Bernie Siegel, Cancer, Clinical, evidence, Love, Love and Healing, M.D, Medicine and Miracles, Peace, promotion, psychologic methods, psychological, quack, Therapy

Another poster on What Now has passed on the irresponsible claims of a "Dr" Lodi about chemotherapy.

Legal threats on behalf of Lodi prevent me from commenting further than to say that Mr Lodi is presumably seeking only to promote the oxidative, chelation, homoeopathic, and other quack therapies he offers at his private clinic by his attacks on proven conventional treatments. His motivation is therefore financial.

His profoundly unhelpful and scientifically unjustified claims that doctors would not themselves have the treatments they give to patients were published in "Get Fresh" magazine.

This publication looks like a harmless health and beauty mag, but seems to actually be a slick propaganda sheet pushing the raw food quack diet, and seemingly all other forms of dietary alternative medicine.

This is not a reliable source of scientific or medical information. I wouldn't even trust its beauty tips.

They have been reported to their local trading standards department and the The Medicines and Healthcare products Regulatory Agency for what appears to be a clear breach of the Cancer Act, which prohibits anyone from making claims to be able to heal cancer of the sort they do on their website.

"Dr" Lodi is out of reach in the US, but these muppets are in the UK, and bound by our laws.

There is no alternative therapy which can strengthen the immune system. I'm sorry that anyone has been given false hope, or distressed by the false claims of a quack and a worthless magazine, but that's the truth.

Don't believe me? Ask Paul Merton's wife. Oh that's right, you can't, because she tried to beat cancer with the power of nutrition and positive thinking, and is consequently dead.

I think Gary38 is being a little too kind in describing this as "unproven" on the WN site, when "total and complete bollocks" might be more accurate, but sometimes it's hard to know which description is more convincing to the audience.

Labels: Alternative, Cancer, Chelation, Clinical, Diet, evidence, Get Fresh, Homeopathy, immune system, Insulin, Medicine, Oxidative, promotion, psychological, quack, Therapy, Thomas Lodi, Trial

I see someone has posted the old internet myth about asparagus and cancer on What Now. Perhaps someone at the asparagus marketing board is forwarding this tosh out in time for the fresh asparagus season.

The only reference anywhere in the world to the supposed original author "Richard R. Vensal, D.D.S" seems to be the version of the article which has been circulating the internet since 2006.

There is no other trace in the scientific literature of either the author, or the journal in which it was supposedly published (a now defunct collection of anecdotes on alternative medicine).

However, we can note that if there is a Richard Vensal, a DDS would make him a dentist, rather than a biochemist, a nutritionist or an oncologist.

As someone has pointed out on the board, "It is...a load of bullshit". Ah, le mot juste!

Ooh look, a timely nurse blog on this. Whatever next?

Labels: Alternative, asparagus, Cancer, Diet, evidence, Malignant, Medicine, Nature, promotion, quack, Richard Vensal, Trial

I see someone is promoting a dietary supplement called Biovitali Vitalcells on the What Now board with what looks to the unsophisticated eye like some reasonable scientific evidence. I guess the moderators will eventually get round to deleting this, but wouldn't it be better to have a look at how strong the evidence is?

So let's have a look at that evidence, which is:

1. The product has apparently been patented

2. It is supposedly endorsed by the MD Anderson Cancer Research Centre and the National Foundation for Cancer Research

3. Laboratory trials show it not just to stop cancer and cardiovascular illnesses in their tracks, but to prevent them occurring in the first place, and to extend life by 30%

Taking these claims one by one-

1. Patenting something does not mean that anyone has shown it to actually work. It is a commercial device to prevent anyone copying your work. Having a patent does not mean that something does what it claims. This is no evidence at all.

2. It seems not to be endorsed by either the MD Anderson Cancer Research Centre, or the National Foundation for Cancer Research as is claimed in the manufacturers literature. Both of the organisations in fact have advice against cancer patients and others taking non-prescribed food supplements on their websites, here and here. Neither of their websites make any mention of this product.

3. If the non-peer-reviewed in-house research on the manufacturer's website were true, and applicable to humans, cancer would be no more serious than the common cold. Every single one of the ingredients shows at least 80% tumour inhibition, and together they are even more powerful. But every one of these ingredients is a substance present in normal foodstuffs. How can this be?

Let's see what might be going on. Have a look at the table at the end on lifespan increase. 100% of these mice get cancer during their lives. That is because this strain of mouse has been specially bred to get skin cancer.

The experimenters made getting cancer a racing certainty in their antioxidant experiments by also injecting the mice with a powerful cancer-causing agent, and then constantly feeding them with something which helps cancer to grow.

They have not published their experimental protocol, but let us generously assume it was similar to that used in this real scientific research, despite us not being in a position to check whether they did things properly.

They fed the supplements along with the substance which helps cancer to grow, so that exposure to the promoter and the antioxidants was simultaneous.

Every single one of the ingredients showed incredible levels of tumour inhibition, far higher than that shown by the real treatment linked to previously. If I were a mouse genetically engineered to get a type of skin cancer who happened to have accidentally been injected with a potent carcinogen, and to be unfortunate enough to be on a drip of a drug which promoted the growth of cancer, it seems like this product would be well worth a look. Any other species, any other sort of cancer? Well, we'd have to look at the peer reviewed evidence.

Of course, this product is just a vitamin and antioxidant supplement, which contains the usual stuff, including a number of substances that in real people have been shown promote cancer when taken as a supplement, rather than inhibiting it, such as:

Beta Carotene
Vitamin A
Vitamin E
Vitamin C

Furthermore, the claims that taking combinations of these substances improved their effect is the opposite of what has been found in real studies. Combining beta carotene with vitamin A or vitamin E actually kills more people than either ingredient alone. Source.

There is therefore no chance whatever that the lab results shown in its website have any meaning for cancer patients.

Cancer Research UK advise as follows about all food supplements:

" We need a lot more research in this area before we will know for sure which vitamin and diet supplements may play a role in helping treat, prevent or control cancer. The best way to get the vitamins and minerals you need is through a balanced and varied diet, with plenty of fruit and vegetables. Vitamin supplements don’t have the same benefits as naturally occurring vitamins in fruit and vegetables."

And of course we now know that for those receiving active treatment, antioxidants and vitamin C can block the effects of chemotherapy and radiotherapy. Source.

Someone has suggested on the What Now site that explaining all of the above is unnecessary, and that the last thing the site needs are know-alls telling you all what to think. But here is that same person thanking me for educating them on this very subject after they gave bad advice to someone.

Maybe the site doesn't need know-alls, but know-somethings are useful in situations like this, aren't they? Failing that, the know-nothings could at least not give advice to desperate people in areas they know nothing about.

I see someone has started a new "natural treatment" thread on WN. I'll be interested to see if Gary's polite and sound advice is well-taken. History suggests no, but the site is under moderator lockdown whilst my complaint is being investigated, so who knows?

Labels: Biovitali, Cancer, Clinical, Diet, evidence, immune system, Malignant, Medicine, Melanoma, Nature, promotion, quack, Supplements, Trial, Vitalcells, Vitamin D, Vitamins

There are a few techniques by which alternative medicine is indirectly promoted, and I would urge people to be very watchful for these.

Those I have noticed are:

1. Whilst the poster claims personally not to have any brief for alternative medicine, they post a link to a site which does. Some of these sites might be blatant, like the "whale.to" site which believes in everything except conventional medicine. More subtly, the sites might be like canceractive, which covers itself in disclaimers, but presents anecdotes supporting harmful alternative techniques as equal with scientific research.

If you do not how this constitutes promotion of alternative medicine, look at my previous blog on weighing evidence. It is essentially like those cable TV programmes on alien abduction and so on which say "you decide", but present biased information with the majority pointing towards the irrational conclusion.

2. Book recommendations-whilst not themselves endorsing alternative medicine, the poster recommends a book by an author who does, who gives false data to support the claims.

3. Casting a discussion of the lack of evidence for alternative techniques as a clash of individual opinions. Where this is done, note that the person recommending rationally based treatment always back what they are saying with a link to expert medical opinion. Note that the person supporting alternative medicine never does, but instead makes vague unsupported claims like "science does not have all of the answers", or "things are less certain than you claim".

4. Quoting the "lies, damn lies and statistics" line so often attributed to Disraeli, and not realising that it refers to the tendency of people in politics to twist statistics to support weak arguments no more than to reject statistics which do not support their arguments. Statistics are not frequently misrepresented in science and medicine as they are in the inexpert world of politics. Scientists and medical researchers know what statistics mean.

For example, in today's news, yesterday's report in the Journal of the National Cancer Institute on alcohol and cancer risk says that there is no safe dose of alcohol for women with respect to breast cancer. Because the study was over 1.3m million women, they are very certain of this. This is something I would describe on here as a fact, for an audience with no knowledge of statistics. The paper tells us how certain the researchers were, if you look at the previous link. The degree of certainty is indicated by the figures they give. The figures show that the chance of them being wrong varies from around 100:1 to 1000:1, or they are 99 to 99.9% likely to be right. As someone asked me recently, are you willing to bet your life on these odds?

5. Bringing in ideas from literary criticism and so on, that scientific evidence is just one of many forms of knowledge, and that the beliefs of native people or internet quacks are just as much knowledge as the results of painstaking scientific enquiry. They may also claim that their personal feelings and experiences count as equal or better evidence. Note that I have no objection to this in areas where a person is not claiming that personal experience trumps the science. Sharing experience is very valuable, but:

6. Confusing sharing personal experience with making claims of medical effectiveness. We can share how things made us feel, but once we start sharing our opinions of what might make people better, we are making medical claims. We should expect to be corrected if these claims are untrue. We cannot borrow language from therapy, and claim that our experience is being invalidated. Our direct experience is that we do x and y happens. When we say that x caused y, that is not our personal experience, but advancing a theory as to causation. It is our opinion, not our experience.

Labels: Alcohol, Alternative, evidence, Medicine, promotion, statistics

It can be hard for people without a scientific or medical background to weigh up the evidence when they start to do research on the internet, as so many do when they are diagnosed with cancer. Often the things which come high up in Google's ranking are the most misleading.

All evidence is not alike. It can be dangerous to rely on what your neighbours or friends tell you. For example, just because an alternative technique or even cancer drug or worked for them, that does not mean it will work for you. Also, there have been many ways of doing things in medicine that were later found to be useless or even harmful when studies were done.

Questions

Here are some questions that might help you weigh up the information you find in the media or on the Internet about treatments.

How could this treatment help me?

Has it been studied in people like me?

Is it likely that this drug will harm me?

Am I more likely to get side effects than other people?

Who is telling me about this treatment?

Is there a reason they want to tell me how good it is?

How strong is the evidence that this treatment works?

Are the results of a study published in a medical journal?

Is just one person telling their story on television?

What are the alternatives to the treatment being offered?

What are the costs of the treatment?

How to answer these questions: weighing up the various sorts of evidence

What friends and family say

When you aren't well, your family and friends often give you advice and tell you about their experiences. These stories can be very powerful. If your mother says that your daughter has had so many sore throats that she needs to have her tonsils taken out, you may believe what she says because she is your mum. She may say that when you had your tonsils out you stopped missing school and started eating better and growing more. But many thousands of children have their tonsils out each year, and there is no evidence from research studies that it does them any good at all. Some even get complications from the surgery, such as bleeding. Your mum means well, but one person's story is just that. It is the story of one person who had a treatment. It is not the story of thousands of others who have also had it.

For example, you often hear stories of people who have survived cancer because they went on strict diets. However, you are less likely to hear about people who went on strict diets and died. They are not around to tell their stories. It can be hard to follow a strict diet if you have cancer and find it hard to eat. It may keep you from enjoying your life.

What your doctor says

It's tough for busy health professionals to keep up to date with advances in medical knowledge. A doctor would have to read 17 articles in medical journals every day of the year to keep up with new information in his or her area of medicine. More medical information is now summarised to make it easier for doctors to keep up to date. But not all doctors use this type of information. That means there is a big difference in how conditions are treated across the country.

Sometimes there is more than one treatment for a condition. This is why what you want out of your treatment and your life are so important when deciding which one to have. When there is no right answer, you need to make sure you understand the risks and benefits of the treatments being offered to you.

What the experts say

Your doctor may be an expert in his or her field. Or your doctor may decide how to treat you based on what other experts in the field say. Much of what doctors learn at medical school is based on what experts think. Doctors like to ask their colleagues for advice. But experts don't always get it right. It is safer to rely on the results of good research studies than on one person's opinion, no matter how well known they are.

What the media say

Every day there are stories in newspapers or on television about the latest discoveries in health care. One day you may hear that drinking alcohol stops you getting heart disease. The next day you may hear that it can increase the risk of getting breast cancer. What should you do?
There are also a lot of sites on the internet that provide health information. But it can be hard to know which ones to trust.

The media often report on the results of just one study. There may have been other studies that had different results, and the reporter may not know about these. Usually, any one study just adds a brick into a growing wall of evidence. The results of one study cannot tell you the whole story. It is only after other groups of researchers repeat the study and find the same results that answers become reliable. You do not need to make a decision on the basis of one study. The media also tend to be optimistic about advances in medicine.

What tradition says

Just because something has been used for years doesn't mean it works or can't hurt you. Many complementary and alternative medicines (such as herbal products or vitamins) have been used for years. But there isn't always good evidence that they do more good than harm.

Testimonials

Much of the misleading information on the internet takes the form of testimonials from individual patients. How can you tell how strong such evidence is?

Dr Peter Moran offers the following advice (as abridged by me)

The basic questions

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)

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, 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:

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.

Cancer may never even have been shown to be present at any stage. 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.

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.

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.

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.

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 work.

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.

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.

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?

Statistics

Medical statistics are touched on in the preceding section. These are frequently misunderstood, and quite often misrepresented. It is sometimes claimed that something which is proven statistically is only partially true, or that it is possible that a percentage of people who respond to some treatment would be excluded by statistics. This is not how statistics work. For example, Dacarbazine only gives a good response in 15% of melanoma patients, but this response is still clearly seen in the statistics.

In scientific research, statistics are a way to combine the information from many patients, and place a number on how reliable the conclusions drawn are. The minimum standard in scientific and medical research is a 95% chance that the conclusion is correct. For those who do not like percentages, this makes the chance that the conclusion is wrong a 20:1 outsider, and more often in medical research, this might be 100:1 or 1000:1. Are these odds you would care to bet your life on?

It is however true that the statistics do not strictly apply to an individual's survival chances. It does not matter that 99% of people die in the first five years if you are in the 1%. This does not however mean that alternative medicine treatments might work for a percentage of people, but the statistics miss the effect.

The above is largely cobbled together from three sources:

The BMJ's explanation of Evidence Based Medicine
Dr Peter Moran's page on cancer testimonials
Steven J Gould's article on understanding medical statistics "The Median is not the Message"

Labels: Alternative, based, Cancer, Clinical, evidence, Medicine, Resources