My Malignant Melanoma

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

Thought I'd crosspost this from a discussion we have been having on the cancerbacup forum:

"Essiac and Laetrile are useless against cancer. Laetrile gives those who take it cyanide poisoning, though whether they notice the symptoms or not might depend on the dose, and personal susceptibility.

This view is supported by the following reputable organisations, who in turn have these opinions because scientists have tested the agents and found them not to work:

Cancer Research UK

US National Cancer Institute

Cochrane Collaboration

Note that these references should not be believed simply because the organisations publishing them are mainstream. That would be to fall for the same logical fallacy as quack medicine promoters, the "argument from authority". Someone is not right because they have an impressive title, or were nominated for, or even won the Nobel prize. Check out the research backing the claims.

Linus Pauling, (double Nobel Prize winner) for example was a genius in his field, but dead wrong about the effectiveness of Vitamin C against cancer.

Here is a summary of all scientific evidence to date on Laetrile as of June last year.

An interesting article on Laetrile by a doctor, and fully backed by scientific research appears here

To summarise the research listed above, Laetrile is ineffective aginst cancer, and basically has an identical effect to cyanide. Any replies to this post which do not back claims to the contrary with research from peer reviewed scientific literature as I have will be ignored.

As the very first post in the thread says: if I am taking both chemo and Mrs Caisse's tea, who cares which cured me? And indeed who can really tell if it was one, the other, or neither?

That I took essiac or whatever and my cancer got better no more shows that it cures cancer than day causes night. Sometimes cancer just gets better. Our bodies mount a successful last-ditch defence. Just because something follows something else, does not show the first thing caused the second. Only by trying a single agent many times under controlled conditions can we see whether it works or not.

Whilst we are in education mode, we can have a look at the claims made by other posters on this thread which are contradicted by the references I have given above. You can ignore this bit if you like, point by point rebuttals are tiresome to many people:

1. "It may be that B17 is a good one to go for, as the US have banned it." Laetrile is not a vitamin. It is a poison with no effect on cancer progression. It has been banned in the US because of this. This makes it a bad "one to go for".

2. "ordinary processed sugar will kill you long before the cyanide in apricot seeds will." The cyanide produced by laetrile is the same cyanide which is in Zyklon B. There isn't some sort of natural cyanide which is good for you.

3. "The "cyanide content" of almonds, is only released on contact with the cancer cell with which it reacts, and it is not activated in any other situation." In fact the cyanide is released on contact with all parts of the body, especially the digestive system, which is why oral administration is so much more acutely harmful. There is no scientific evidence of any specificity to cancer cells as claimed.

4. "In 1950 after many years of research, a dedicated biochemist by the name of Dr. Ernst T. Krebs, Jr., isolated a new vitamin that he numbered B17 and called 'Laetrile'." Laetrile has been known since 1830. Mr Krebs was not a doctor or a biochemist at all. His father was a doctor, but he was a simple snake-oil merchant. His father the doctor was a quack too. Harold Shipman was a doctor too. Being a doctor isn't an automatic guarantee of probity. Claiming to be a doctor when you are not is however pretty much a guarantee of quackery.

Some other fallacies:

1. "How can an apricot seed, provided by nature, be called a drug" The same way as opium provided by nature might, but I'm not calling it a drug, I'm calling it a poison. The most potent poison in the world, Botulinum toxin is a natural substances.

2. "Dr Budwig was nominated for a Nobel Prize SEVEN times" I could say the same thing of myself and no-one could argue. The committee does not publicise the names of nominees.

I will ignore the meaningless waffle, paranoid hysteria (international criminal conspiracies, please spare us!) and rudeness of the posters promoting quackery. I understand that some people's beliefs are not going to be changed by any amount of rational evidence, and they then resort to bullying tactics.

My opinions are not however beliefs of this nature. Show me a valid clinical trial of these agents which shows that they work, and I will change them. They are opinions backed by solid evidence. The other posters promote irrational beliefs which are flatly contradicted by the same evidence.

So it isn't a question of respecting others, or their beliefs. It a question of not allowing others to promote their dangerous and irrational beliefs with outright lies.

I don't know the other posters from Adam or Eve. I have nothing against them. Their ideas are however dangerous nonsense, founded only on the lies of commercially interested quacks and need to be countered with facts.

I will do this as many times as it takes, but I cannot see how they can come back with anything other than more irrational nonsense. Their claims have no basis in fact, as this post now demonstrates in detail (but only of course to anyone unwilling to believe in a global conspiracy to deny us effective anti-cancer agents by subverting the whole activity of science and medicine)"

Anyone hoping that I will publish comments on this post which amount to testimonials in favour of quackery are going to be disappointed, I'm afraid. We are not in the business of publishing unproven claims which could mislead vulnerable people here. Testimonials are vastly inferior evidence to the scientific studies I have linked to above. Publishing them might make it seem to the vulnerable that there are two sides to this argument, when there are not.

Labels: Alternative, Budwig, Clinical, Diet, Essiac, Forum, Laetrile, Malignant, Medicine, Melanoma, Resources, Trial, UK, Vitamins

Another useful resource found: http://melanomaresources.info/index.html

Labels: Malignant, Melanoma, Resources

There's a new forum for MM patients here. It's a little more genteel than the Scansol Melanoma Board that most people go to (so far)!

Labels: Board, Bulletin, Forum, Malignant, Melanoma, Resources