Having uploaded my Fifty Shades of Cancer to Kindle and Kobo I suddenly realised that I had a few important insights that I hadn’t included that really needed to be included and that some of the others could be shuffled to one side to make room, So, for those who have already bought the book here are the bits that I have added in. And for those who haven’t here is a taster of what’s in the book.
43. Is evidence-based medicine all it seems?
Doctors use the phrase ‘evidence-based medicine’ to define what they do. There is a clear inference here that everything that they do is supported by strong evidence and everything they reject is unsupported by such evidence. But this is not true.
This subject is extraordinarily complicated – too complex to discuss in a few short paragraphs (I have given a lengthy discussion of this in The Cancer Survivor’s Bible) but among the issues that are raised is the question of anecdotal evidence and what credence we should give to it. Anecdotal evidence is evidence based on what someone else has reported. “I heard of someone who…” There is also the issue of what credence we should give to our own direct experience.
Now, I have seen news reports that announce that ‘research proves that vitamin C does not cure colds’. I have also twice had the experience of feeling a flu come on and immediately I have started throwing vitamin C down my throat at a rate of one gram per hour – actually two or three 1,000mg tablets every two-to-three hours – and by the following morning I have been right as rain, completely clear headed (despite a few hours earlier feeling completely bunged up). So should I listen to the newspapers or to my own direct experience?
I think you can guess the answer. Among my friends I am known as Mr Vitamin C. Whatever the problem I am likely to recommend (among other things) large doses of vitamin C. One friend of mine once complained of the heavy cold she had so I went into my mantra.
“But I’m already taking large doses of vitamin C,” she said. “I take one of those big tablets every day.”
“Every hour,” I said.
“Every hour?” I could see the shock in her eyes.
“You can’t overdose,” I explained.
A week later she said to me: “I did what you said and I could just feel the cold going away.”
OK. Where have we come? The problem is this. I have direct experience of the power of vitamin C (and no it is not that I am susceptible to the placebo response) so I am happy to disbelieve any attempts to rubbish it. My friend did not have direct experience but she decided I was a good source of information, so on my say-so she increased her intake. Now let us suppose that she had told a friend of hers “My friend Jonathan says to take lots of vitamin C” – then the friend of the friend is more remote from the source of information so he or she will have less confidence in the truth (and indeed the information may have become tainted in some way) – so this is one reason that anecdotal evidence needs to be treated with some caution.
However…
Doctors and scientists frame the issue as one of ‘truth’. What is the truth about vitamin C, for example? In that case, it is perfectly reasonable to be suspicious, as they are, of anecdotal reports. That doesn’t mean these anecdotes are useless. It just means they are low-level evidence. But as we have seen anecdotes are not equal in their evidential force. The closer we are to the person who is telling the story, the more we know about the person, the stronger the evidence becomes because we will tend to trust the source more. That is why
But for the patient who has to make a decision the issue is not: Is it true or not true? The issue is: Should I do this or not do this? It is a decision-making issue, not a true-false issue,
Why does this make a difference?
We accept that there is a great deal of uncertainty in our lives. We accept that a book or film or restaurant may be disappointing despite being enthusiastically recommended by a friend. We accept that there is risk in deciding to marry this person or that – but there is also a benefit. We have to balance the risk against the benefit.
So, it is perfectly reasonable to take vitamin C for your cold, for example, on the principle of ‘suck it and see’. Just do it and see if it works. If it does, that’s good and if it doesn’t well at least you tried and now you know.
When we approach it in this way we do not require absolute proof that it is effective, we just require that there is some reasonable possibility of this based on some evidence no matter how flimsy. Obviously, if we are wise, we will balance this consideration against the possible pain and damage that might result. Or the cost involved.
In the case of vitamin C there are no down-sides. Vitamin C will not in any way, at any dose, be harmful, certainly not in the short term, and as for cost, it is very cheap. A big potential plus against a non-existent minus. So this is a no-brainer. (Note: when I talk of vitamin C I am NOT talking about those fizzy orange tablets but ascorbic acid or sodium ascorbate powder that I get from a major online supplements supermarket in the States – there are a number of these. (I use iherb.com.)
Chemotherapy however offers a different equation. It might offer in the case of testicular cancer a 96% possibility of cure (the positive) against a great deal of pain and damage (the negative) or it might offer – as low as a 2.5% possibility of cure (as my wife was quoted) but it requires the sale of your house to pay for it as well as a high risk of permanent damage.
Each of us will make different decisions in the face of these facts – and that is as it should be.
So, a true-false question might come up with an answer based on proof. There is no proof that will determine whether a decision is absolutely right or wrong.
By the way, it should be noted here that the general consensus is that 80 per cent of what doctors do is NOT based on strong evidence. There is no evidence, for example, supporting the benefit of being in a hospital (and quite a lot of evidence suggesting that being in a hospital is a health risk on its own) – but this doesn’t stop doctors recommending that very sick people should go to hospital.
Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence.
Helen Keller
44. Anecdotal evidence and placebo cures
The issue of whether anecdotal evidence is useful arouses extreme passions in discussion forums. Some people assume that anecdotal evidence is false evidence, that if someone claims a benefit that is not supported by proof that it is false – either they are lying or they have experienced a placebo cure, which wouldn’t count.
My response to the first claim is to say – try it yourself. See if it works. Anecdotal evidence can be a useful signpost.
My response to the second objection is this: If X produces a benefit to me, and if that benefit is a response to the placebo effect and not to X itself, then give me X not because it is effective but because it will create a placebo effect. Placebo effects are good. If it takes X to trigger this effect then X is good.
I believe a leaf of grass is no less than the journey-work of the stars.
Walt Whitman
45. Evidence-based medicine (part 2)
I want to tell you a story about lavender essential oil. In our house, while the kids were growing up, we called this magic oil. And it is magic. I have often cut myself in the kitchen, often quite deeply with blood gushing out and I have then poured lavender oil liberally over the wound and repeated this over say five to ten minutes. Half an hour later the cut will have completely healed itself and there will be no pain or even sensitivity and nor is there any issue of the wound going septic. This is also true of any burn. The pain will quickly go.
A friend of mine had a large steam burn on his hand that was still open and festering three days later. I poured lavender oil over this wound and within an hour there were clear signs of it healing. Within a week it had scabbed over and dropped off leaving no sign of an injury.
I was directed once to the US National Cancer Institute’s database of herbs and their effects. I looked up lavender and the consensus opinion was that it was not very effective. I emailed them and asked them to do a simple experiment. I asked them to cut themselves and pour lavender oil over the cut and then an hour later to come back to me and say it was not effective. Their reply was that several professors had said that it was not effective so that wording would stay.
Does that sound ‘evidence-based’ to you? Our direct experience is surely the strongest evidence there can be (certainly for ourselves). We know that research can be tinkered with and so we cannot really be sure that what is ‘proved to be true’ really is true – so we have to judge it.
The problem is that we live in an uncertain world. Demanding certainty in this world is bound to lead to disappointment. We just have to assess carefully the evidence from all sources and then make our decision on our own estimation of the risks and costs on the negative side against the benefits on the other.
It was the French philosopher Pascal who came up with the formulation of this by arguing that even if it was 99.99 per cent certain that God did not exist, we still needed to believe in Him because that is the only way to get to heaven (if heaven exists). For Pascal, it was not necessary to have proof of God’s existence before he would agree to believe. I would say the same to those who argue against alternative therapies. Heaven (in this case the possibility of cure without crippling pain and the strong likelihood of long term harm) can only be reached by means of the alternative therapies. But each of us has to make that decision for ourselves.
If you wish to make an apple pie from scratch, you must first invent the universe.
Carl Sagan
46. Evidence-based medicine (part 3)
There is evidence that conventional treatment shortens lives. A medical statistician by the name of Hardin Jones calculated that the average cancer patient was likely to live four times longer if they did nothing for their cancer than if they did something. This conclusion has never been rebutted.
“My studies have proved conclusively that untreated cancer victims actually live up to four times longer than treated individuals,” Dr. Hardin B. Jones told MIDNIGHT Magazine.
“For a typical type of cancer, people who refused treatment lived for an average of 12 1/2 years. Those who, accepted surgery and other kinds of treatment lived an average of only three years!
“Beyond a shadow of a doubt, radical surgery on cancer patients does more harm than good.”…He has traveled the world collecting data on the dreaded disease, and presented his findings to the American Cancer Society and medical schools.
Asked why ‘the medical world has ignored his findings, he replied: “Frankly, I don’t know the reasons. But they have probably become caught up in the tidal wave of individuals demanding treatment.” (quoted from http://www.rethinkingcancer.org)
I certainly know that in the case of my wife, she could not have died faster if she had done nothing. So doing nothing for your cancer is a perfectly reasonable strategy.
Scare tactics
However, say this to a doctor and you will get a response like this: “One of my patients refused to do conventional treatments and a year later she died”. And this is very possible. People with cancer do die. But the doctor doesn’t tell you about the patients who have followed his advice to have conventional treatments and have then died. The fact that a patient has died does not invalidate the journey they have travelled whichever way that is.
Sunshine is delicious, rain is refreshing, wind braces us up, snow is exhilarating; there is really no such thing as bad weather, only different kinds of good weather.
John Ruskin
The best thing one can do when it’s raining is to let it rain.
Henry Wadsworth Longfellow
47. Just imagine
Just imagine that I announced to the world that I had a new treatment. It would cure something like 5-15% of all cancers but that it would cause immense pain, would seriously damage health and would be extremely expensive. Would such a treatment be welcomed? I think not. But this is the situation today with chemotherapy. If it were a new treatment it would be rejected out of hand but because it is an old established treatment it must be persisted with. Does that make sense?
I can’t change the direction of the wind, but I can adjust my sails to always reach my destination.
Jimmy Dean
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