"Information has never killed anyone with cancer". This statement was made by one of the panel at a session called The Internet and Cancer at this year’s European Multidisciplinary Cancer Conference in Stockholm. It was a bold statement and it’s very probably wrong.
The statement was made in response to a challenge from a patient advocate who was concerned about the impending tsunami of cancer information arising from a number of new online information initiatives for people affected by cancer. However, you could easily argue that this wave has already struck with many patients and carers drowning in a sea of information or carried away on a tide of false expectations.
To give some indication of the volume of information relating to cancer on the internet, if you search “cancer” on Google it returns about 732,000,000 results. Even if you take into account the inevitable search returns relating to “horoscopes” and “the tropics” this number is still going to be in the hundreds of millions.
The information contained on these websites represents the accumulated knowledge of over 3500 years; from the ancient Egyptians who cauterized tumours with red hot drills to the more learned physicians and scientists of today who publish their findings in online journals.
All of this information has given us the greatest opportunity in history to prevent, detect, treat, cure and effectively manage cancer. It also means that patients and families affected by cancer have never been so well informed and therefore never been such active participants in their own treatment.
However, the internet is not an inert, benevolent entity, its open and unregulated nature allows seams of misinformation and prejudice to form. Often this misinformation is directed at the most vulnerable; sometimes misguidedly, sometimes for profit, for some people with cancer this poor information could cost them their lives.
A good example of this relates to the breast cancer drug Tamoxifen, arguably the most successful cancer drug treatment ever developed. Since it was first prescribed more than 30 years ago it has saved the lives of hundreds of thousands of women. In fact if you add up all the years that all the women have taken Tamoxifen it would total around 20 million years of patient use. Whilst it is slowly being superseded by new drug therapies, it continues to be one of the world’s most researched drugs and continues to throw up surprises and new clinical uses. For example, large international trials have shown that taking Tamoxifen may actually help prevent cancer developing in high risk women.
If you search “Tamoxifen” in Google you get about 10.8 million results. Unsurprising for a major treatment option for the world’s second most common cancer. On the first page of results there are a number of expected and trusted sources of cancer information including the National Cancer Institute in the US, Cancer Research UK and Macmillan Cancer Support.
However, on the first page of Google you will find also find the article “Tamoxifen-A major medical mistake?” from the website all-natural.com. Despite several decades of research, the hundreds of thousands of lives saved and the fact that it costs the NHS about £1.90 per patient per month, this article claims that Tamoxifen is a toxic and carcinogenic drug that was developed as part of the pharmaceutical industry’s plan to “swell their profits by manufacturing chemicals that on the one hand cause breast cancer, and on the other reputedly cure breast cancer”. Personally, I would argue that if the pharmaceutical industry were intent on a money spinning conspiracy of this kind they would pick a drug that cost a lot more than a Marks and Spencer’s prawn sandwich each month.
Tamoxifen is a drug that is well tolerated by thousands of women each year. However, as with the vast majority of drug treatments there can be side effects which women may experience to varying degrees. These could include hot flushes, nausea, leg cramps or weight gain and in some very rare cases headaches and blood clots. Each of these side effects, whilst rare, are not to be taken lightly as they can affect a person’s quality of life. There is also a very small, but real, increase in the risk of developing uterine (womb) which cannot be ignored. However, when considered in the context that a woman’s risk of developing uterine cancer increases from 0.1% to 0.2% when taking tamoxifen this risk is heavily outweighed by the well established benefits of taking tamoxifen to treat and prevent breast cancer.
All of these facts are in the public domain and can be found on the websites of most breast cancer charities, cancer research organisations, on leaflets and in published journals. If we were trying to hide or suppress them as part of huge money making conspiracy then we haven’t done very well- if you search “tamoxifen side effects” on Google you retrieve about 3.7 million results.
So, why does this matter? Tamoxifen is most effective when taken once a day for 5 years. In fact, recent research has shown that if this is adhered to it can continue to reduce the risk of breast cancer recurrence for a further 5 years even after you’ve stopped taking it. However, recent research has shown that as many as half of all women who have been diagnosed with breast cancer stop taking their tamoxifen early and in doing risk a recurrence of their disease. To highlight how important this is, for every 100 women who complete their course of tamoxifen 6 fewer have a recurrence of breast cancer than those who stop their course prematurely.
There may be lots of reasons for stopping taking tamoxifen, such as if side effects are having a detrimental effect on quality of life. In this case a patient has every right to talk to their doctor and be placed on a different treatment if appropriate. This would be an informed choice and every patient ultimately has the right to weigh up the positive and negative aspects of any treatment they are offered.
However, there are people out there who use misinformation to prey on the fears of people affected by cancer, at a time of great uncertainty and vulnerability, either to sell their books outlining unfounded alternatives to effective treatments or to peddle completely ineffective tablets dressed up as miracle cures.
When I first started working for Tenovus I remember getting a heart breaking email from a lady whose mother in law had an advanced liver cancer which had spread to several other areas of her body. She contacted us because she wanted to get our opinion on a “cure” for liver cancer which she had read about on the internet called Zeolite. She was obviously very distressed and understandably looking for any hope of saving a loved one’s life.
In hope, but little expectation, I did some research on Zeolite which turned out to be a type of volcanic ash more commonly used in water purification, the production of household washing powders and as a non-clumping cat litter.
Outside of a handful of papers relating to research on dog tumours in Croatia there is no evidence to show that Zeolite is an effective treatment for any cancers let along advanced liver cancer. In fact there is some evidence that, if inhaled, Zeolite could actually cause mesothelioma, an aggressive and incurable form of lung cancer.
Therefore I had the difficult task of telling her that it was extremely unlikely that Zeolite was going to save her mother in law’s life, giving her the facts in as balanced and sensitive way as I could so that the family could then make an informed choice as to whether they would try it anyway.
Sometimes it is very difficult to give balanced and calm advice when you know that there are people out there who will take $60 a month from terminally ill cancer patients and send them bottles of volcanic dust in return and tell them that if they eat two teaspoons of it a day it could cure their cancer.
The waves of information keep on coming and it is vital that patient groups, researchers and healthcare professionals are not complacent about the quality, relevance and understandability of the information they provide to people affected by cancer. We need to make sure that we are constantly informing, debating and most crucially listening or less scrupulous people will.
The tidal wave of information may have already struck, but people still need to be warned that the water is full of sharks.