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Being diagnosed with cancer is a life-changing moment. When we ask those who want to feature in our stories about their own moment of diagnosis, they are often able to recount the moment in crystal clear clarity. Often though, those moments after the initial diagnosis can be a blur and patients often turn to the internet for further information about treatment and options available to them.
It’s no wonder that people do search online for wonder treatments or options beyond what they’ve been presented. Sometimes, when you are told that your options are limited, or the particular course of treatment will take a toll on your body in ways you hadn’t imagined, you seek out the possibility that there may be something else out there.
The internet has changed the world. In recent years, however, some have used its immense power to share mistruths or to give false hope to those seeking answers or solutions that just don’t exist. In the sphere of cancer, this may be people online claiming that a cure is being hidden, or there is a course of treatment that conventional science just doesn’t want you to know about.
The rise of social media has played its part in the spread of misinformation unfortunately. While Facebook and its many groups of cancer communities can be incredibly powerful and supportive, the widely shared news on Facebook can also be an issue. For example, analysis by The Independent in 2016 found that in the top 20 most shared cancer articles on the platform, over half had claims in them that had already been debunked by medics in the field. Often, people read a powerful headline and click the share button before they’ve even read the full article and decide whether they believe the content or not.
The phenomenon exists on other social media platforms too, such as YouTube where cancer videos can be targeted by spammers claiming treatments and encouraging others to get in touch, often leaving a mobile number or email address. Sometimes these will be accompanied with a testimonial, to try and provide legitimacy to the claims.
You may even discover this offline. In a bid to help, family and friends may offer anecdotes of treatments they’ve heard of, alternative diets you could follow and theories about cures. You may find this information overwhelming or confusing and not know how to verify its source.
Patient experience: Lisa Tait
‘I was diagnosed with acute myeloid leukaemia (AML) on 3rd May 2019. I spent seven months in hospital being treated with chemotherapy and I received total body irradiation (TBI) in preparation for a stem cell donation from an unrelated American donor. I hope to meet them face to face this year and I simply cannot wait.
‘While I was being treated at the Beatson in Glasgow, I joined a few AML Facebook groups to get some more information about the impending stem cell transplant, as that was what I was most worried about.
‘On June 3rd while in hospital, I received a private message on my Facebook from a stranger which read, ‘Hello Lisa, this is Faith from Kenya. Have you tried stem cell therapy?’. I hadn’t heard of it, so of course I replied. The second I received the next message I knew right away it was a scam – they had mentioned treatment using fruit! I was bored in the hospital so decided to play along to see how far I could go with them and how much cash they were asking people for.
‘People would pay anything to get rid of their cancer.’
How can you question articles and information like this?
For leukaemia patients, Leukaemia Care will always offer impartial advice on any information that you have seen online. It may be that the information is true and the charity can guide you to other sources on that topic. It may be that the information isn’t correct or is out of date, so we can provide you with the latest research and guidance. If you have any concerns or questions about a particular piece of leukaemia-focussed information that you’ve found online, or been told about, then our team can help. Simply email in to support@leukaemiacare.org.uk or ring our helpline on 08088 010 444 and we will guide you to the right person for help and support.
If you see articles of this type on social media platforms, you can also report news as being fake. For example, on Facebook, you will see three dots next to a post. If you click this, you have the option to ‘Find Support or report post’. Once you’ve clicked this, you can click ‘Fake news’. This will send a report to Facebook and they can look into the matter further.
Facebook groups and forums are a fantastic way to meet others in a similar situation. Charities around the UK run these Facebook groups and tightly moderate them.
Here are some top tips on staying safe in online groups:
● Use groups that come recommended by others. For example, we can vouch for our own Facebook support groups as they are moderated by members of the Leukaemia Care team and checked for accuracy.
● We can also recommend other support groups that we may not necessarily run. For example, CML-UK is one of the biggest CML groups in the world and is hosted privately on Facebook. It’s well moderated and friendly for anybody joining.
● Remember, if you get an unsolicited message on social media, you can ignore, block and delete. Do not engage with messages that you don’t feel comfortable with.
● If you prefer completely anonymous support, there are groups for you too. For example, both Leukaemia Care and CLL Support host their support groups on HealthUnlocked and signing up to these sites can be completely anonymous.
● It’s key to remember that on the whole, online cancer support groups are fantastic places and full of people who just want to be there for others – a few bad apples aren’t indicative of the wider blood cancer community.