The problem with reading about cancer
Cancer. The scariest word in the world. For many people, cancer is the last word that they ever want to hear. In living memory, cancer was not a word that was dared to be spoken aloud. In this modern world, most people still read cancer as a death sentence. Despite all of modern medicine, despite the number of cancer survivors, the only question that matters is “How long?”
Cancer is perhaps the scariest of all topics. When confronted with cancer, most people respond with blind, rigid panic. A rabbit in headlights. The only question that matters is not one of “how are we going to defeat it?” but “when will it defeat me?”
The truth is, there is no easy answer. There is no simple solution. There is not one simple “we do this” rule to fix your cancer.
The problem with cancer is that it is a generic term for what is actually a huge umbrella of different conditions. To date, there are over 200 clinically distinguished categories of cancer. Within each category, many subcategories.
Why then write anything?
The problem that we have in modern society is a complex one. Cancer specialists are rare creatures. The people that truly understand the clinical aspects of cancer, can have hundreds of patients in their care at any given time. For them, they simply do not have the facility to explain the intricacies of cancer to every patient.
But the best patient is an informed patient. A patient that understands their disease, that fully understand their treatment options, are better patients. They are more willing to pressure their doctors into new thinking, perhaps trying riskier treatment therapies, ultimately, standing a better chance of beating their cancer.
When you, or someone close to you gets diagnosed with a disease, everyone in your life becomes an expert. Family members know the blood pressure, how much they’ve eaten, the state of mind, the exact medications and at what dosages, without ever looking at charts.
The best way to get involved. The best way to understand cancer. Is to read about it.
Then the question becomes, what do you read?
Writing on cancer, falls into two main camps. In the first camp, is the medical research papers. In the second camp is the patient information.
Research isn’t accessible
Centuries of tradition, make research journals the default way of communication, of ideas and knowledge, at the cutting edge of science. But, research papers are written for scientists, by scientists. In a professional environment, no one needs to explain the fundamentals of cancer, or even how complex treatments actually work, because everyone that is reading, is assumed to be an expert.
The good news is that doctors do care about research. In 2014, a Doximity survey found that 98% of physicians, thought that keeping up with medical literature was important. 16% even said that they had saved a life as a result of something they recently read.
However, every department of every hospital (and med school) around the world is generating new ideas. In 2004, the Journal of the Medical Library Association reported that a typical medical field receives 7,000 new research articles PER MONTH. These new papers would require, by their calculations, about 628 hours (26 days) to read.
As a doctor, that means a whole month’s worth of reading, without sleep, EVERY MONTH just to stay current with your field. In the last decade, with increasing use of technology, the speed of research and publishing has only increased. More papers are being published every year. So with every month that goes by, physicians are further removed from research. To stay current, they themselves are increasingly relying upon reviews and summaries.
Even with all of this new learning, sometimes ideas are challenged, sometimes our understanding changes. As we learn and understand more, we realise that a lot of what we thought we knew, was actually wrong. The former Dean of Harvard Medical School, Charles Burwell, famously stated in an address to new students
“Half of what we are going to teach you is wrong, and half of it is right. Our problem is that we don’t know which half is which.”
– Prof. Charles Burwell
Patient information isn’t enough
At the other end of the spectrum is patient information. It is designed to take nearly a century of scientific research and distil it down to something that anyone can digest. Ideally, in a glossy leaflet.
Within its simplicity is the key to its failure. Patient information is deliberately written to provide generic information to the largest possible audience. When writing to a large audience, details and language need to be kept basic. It means that all technical language is dropped, in favour of arm-wavy metaphors. It means that specific details, are replaced by generic points.
A few facts and figures, with perhaps a few links to more information is the most you can hope for. Knowing that 1 in 2 people will develop cancer in their lifetime, doesn’t make you feel better if you’ve already got cancer. Nor does it tell you what’s happening.
Perhaps, the biggest problem with much patient information, is that it is not actually written by people with medical backgrounds.
Patient information is not written by physicians with clinical experience, or researchers with the molecular knowledge. No, most information comes from medical government bodies (like the NIH in the US or the NHS in the UK) or via a dedicated charity.
Typically the best patient information comes from the cancer charities, such as the excellent Cancer Research UK or MacMillan Cancer Support. These charities typically have frontline experience of people with cancer. As a result, they focus on the human elements of cancer. The coping strategies, the advice for friends and family, how to keep a positive mindset, what to expect. The charities focus on survival and support, not the mechanics of the disease.
Other materials from these sorts of organisations are typically thinly veiled disguises to raise funding. More interesting in statistics and heart-warming stories than biology. Patient information and similar materials are typically written by a marketing team and look more like advertising than science. Typically the groups that write this information will have a few life science degrees in the team, so they’ll understand the basic principles involved, but rarely the cutting edge of research.
The crux of the problem
For a patient, a glossy pamphlet might tell them their statistical outcome, but they knew that already from talking with their doctor. For someone trying to better understand their disease, where do they go?
so many of the big medical journals are hidden behind paywalls and not publicly accessible
A medical journal is all but inaccessible. Even highly intelligent people, with doctorates in chemistry and physics, people used to reading scientific journals would find it practically impossible. Even ignoring the fact, that so many of the big medical journals are hidden behind paywalls and not publicly accessible.
Information resources online are slowly trying to address the problem of the intermediate gap. However, these resources are focussed heavily towards clinical questions.
The symptoms and causes pages are usually focussed on obvious environmental factors. Your lung cancer probably comes from smoking, skin cancer from too much UV light, etc. Often the pages simply state that people with a different medical condition are more prone to this form of cancer. Like type-II diabetes increases your risk of breast, colon and pancreas cancer. Whilst mostly ignoring any mention of the biology.
And you speak English!
Consider also, that you (by reading this) have a powerful command of English. English is the *de facto *language of science and medicine (although that happened mostly by chance). Most, if not all, of the largest cancer research centres around the world, operate in English. Their findings are published, almost exclusively, in English. The largest, international databases are in English. If you can read English, your resources are widespread and diverse.
Consider for a second, what your options look like if your English is weak or non-existent.
Patient information, again, is quite accessible. For example, Europeans are quite well catered for, thanks to the efforts of organisations like ESMO, a Swiss non-profit that provides patient information in English, French, German and Spanish.
Accessing anything more than patient information in many countries, however, is all-but impossible.
Take for example India. India has a population of 1.25 billion people. The English speaker population of India, is only 10%, with only 5% being fluent. The Indian Cancer Society website, only comes in English. Over 1 billion Indians, will never have the chance to even attempt reading research papers.
Extra! Extra! Read all about it!
Where does the media fall within all of this? This also falls into 2 camps. The mainstream media is often written by journalists doing science, not scientists doing journalism. This is slowly changing, but too often you’ll see one reporter, trying to cover new advances in cancer therapies, and the latest physics coming out of CERN. It doesn’t make sense, you can’t be an expert in both.
The mainstream media has a modern obsession for instant gratification. This creates a tendency for click-bait headlines promising “The end of cancer”. When, in reality, it’s one publication. From one research group. On one type of cancer. That might provide a potential target for a therapy. For a drug, not yet designed. That would still need to go through extensive testing and trials before it gets anywhere near a human being.
Of course, the biggest problem is that to maintain the widest audience, the science is oversimplified to such an extent, that it often becomes factually wrong.
I’ve been read the news for many years, and never once have I seen a follow-up story to these sorts of headlines.
Cancer in the scientific media
If the mainstream media cannot be trusted to deliver factual content to the public, then what of the lesser circulation publications?
To the wider audience, the likes of New Scientist and Scientific American are publications that still need to sell. Their articles are those which cater to broad audiences and general interests. Whilst their writing is much better and scientifically accurate, the information is still kept relatively shallow. This maintains general interest and accessibility, whilst keeping the word count down.
Sites like IFL Science, very much cater to a modern internet audience. The science is good, but content is carefully chosen to generate the most shareable posts across social media. This is great to highlight to the wider world some of the great things that are happening in science. But it doesn’t include any deeper level understanding.
To broaden your knowledge and deepen your understanding requires publications like The Scientist, which describes itself as “the magazine for life science professionals”. However, we’re back to professionals writing for professionals. The writing might be more accessible and easily read than a journal article, but without a life science degree you stand no chance in reading it.
The open-source movement
What we need then, is a dedicated source. A single site where information could be compiled and moderated by experts. A single, definitive record could then easily be translated into any language for use around the world. At this point, you might be thinking that this sounds a lot like Wikipedia. Wikipedia is a great example of what can be achieved with a combined effort of knowledgeable users in their free time. However, in this instance, a more careful approach is required.
The opening line of Wikipedia’s cancer page states
Cancer, also known as a malignant tumor or malignant neoplasm, is a group of diseases involving abnormal cell growth.
A normal person, doesn’t know what malignant means, or that neoplasm comes from the Greek neo- meaning “new” and plasm meaning “formation”. Abnormal is not a world people use in conversation. Heck, most people probably don’t know what a cell actually is, other than “oh yeah… we’re made of lots of them”.
That’s the first line. The first line of the default source of information for most of the world in the internet age. It uses 4 words most people won’t understand. And it only gets worse from there. The rest of the article is basically unreadable to anyone that isn’t studying the life sciences at university.
The right to choose
Doctors want patients to make informed decisions about their treatment. Patients deserve the right to choose how they are treated. But doctors cannot afford the time to give each patient a university level education in medicine. As it stands, many doctors don’t even have the time to ask for a detailed family history. As a result, most patients will end up taking the advice of the doctor, even if it is the wrong advice for their personal circumstances.
If a patient understands their cancer, they understand the treatment. When a treatment option doesn’t work, they can understand why, rather than cursing God and feeling like the doctors are just shooting in the dark.
This is already one of the worst things that can happen to someone, and right now there’s little way that these people can even understand what’s happening to them.
We have a duty to do better. We must do better.