I have had a recurrence of the malignant melanoma which I was first diagnosed with 18 years ago. I’m fine with it. Just as with divorce, amongst other things I have experienced, it’s never as bad the second time, especially since there are now treatments for melanoma which simply didn’t exist eighteen years ago. I’ve been able to get onto a clinical trial for a very promising drug combination, which only takes up one day every three weeks, plus a few more to deal with the (relatively low-key) side-effects, so I’m still very much able to carry on working.
The reason why I mention this is because dealing with cancer again has brought me back into the realm of cancer patients’ social media. Social media for melanoma is very different from how it used to be. In case you didn’t know, malignant melanoma is not “just skin cancer” – it has a really strong tendency to spread, and kill you. Eighteen years ago, a great deal of melanoma-related social media activity was therefore to do with the prospect of dying. Nowadays, it’s mostly people discussing the side effects of the new drugs which are stopping them from dying.
But there is one constant factor which leads me to write this article. Back when there was no effective treatment for malignant melanoma once it had spread, melanoma patients were a prime target on social media for all the snake oil salespeople such as the Gerson organisation, “Dr” Mercola etc. This time round, now that there are literally dozens of effective treatments, and a five-year survival rate of 50% even for Stage 4 disease, I was expecting that most of the quacks would have been driven out of business. Sadly, it turns out that they are still there. Furthermore, the myths about what causes cancer, what can make it come back, and what can stop it coming back have, if anything, multiplied.
There were always muddle-headed hippy types and “complementary medicine” fans (not mutually exclusive groups) latching on to environmental scare stories, and unhelpfully passing them on to frightened cancer patients, but the promotion of cancer scare stories is now big business. Ignoring the Express newspaper’s much-satirised ongoing project to classify every single substance known to man as either causing or curing cancer, there are now so many NGOs dedicated to making money by passing on old cancer scares, and generating new ones, that I have trouble keeping up.
Many of my less scientifically educated fellow cancer patients buy into everything they read and see on social media, and are consequently experiencing fear of the 21st century on top of their existing cancer worries. They consequently believe that (amongst other things) plastics promote cancer (they don’t), non-stick cookware promotes cancer (it doesn’t), toiletries and cosmetics promote cancer (they don’t), agrochemical residues in food promote cancer (they don’t), genetically modified foods promote cancer (they don’t), dairy products promote cancer (they are if anything protective) artificial sweeteners cause cancer (they don’t), stress promotes cancer (it doesn’t), burnt food promotes cancer (it doesn’t), mobile phones cause cancer (they don’t), and so on.
The (perhaps surprising) thing is that these very same people can have a bit of a blind spot for the things which we know do cause cancer. Malignant melanoma is mostly caused by UV exposure, but some of my fellow patients still go on sunshine holidays, where they drink alcohol (a known carcinogen). They very rarely – for example – try to lose excess weight (obesity promotes cancer), take up running (exercise makes cancer less likely), give up processed meats (make cancer a bit more likely, but bacon is way better for you than alcohol) or give up smoking (still relatively popular in the older people who are most at risk for cancer).
In fairness, having cancer can be quite stressful. Few people have the spare resources to give up their little comforts. It is however relatively easy to buy organic wine, and tell yourself that you are doing something.
I have to wonder if the NGOs spreading lies about “chemicals” causing cancer are aware of the effect that they are having on cancer patients. I’d like to think that this is an unforeseen consequence of their campaigns targeting the “worried well”, and that they are not actually aiming to promote their irrational fears amongst people who have enough to worry about already. I’m afraid however that I am struggling to sustain this assumption in the face of some of the interactions I have had on social media with those who are effectively promoting chemophobia.
