Hi All,
This has always been a topic close to my heart as I am quite a distrustful person when it comes to any kind of medicine, modern or alternative. I don’t like being told what’s good for me until I’ve done my own research and satisfied myself as to what’s what. Something my Oncology team find fascinating but hate dealing with (like, I imagine they fight between themselves over who is going to call me now, as I’ve noticed I get the Registrar’s calling me more often than the Oncologist lol).
I’m sure many of you can relate to this too, as I know I’ve read enough shared stories that make me feel less alone in thinking I’m a bit weird for being so over the top with my questions and challenges to my Oncology team.
Anyway onto the topic I wanted to raise.
As we all use the internet to search for cancer information, treatment options, news and support, we’re always in constant danger of being lured into very misleading or “fake” adverts, groups, or websites that propose to heal/cure/treat cancer with whichever “alternative therapy” the seller is peddling. It seems to have become significantly worse since the pandemic started and cancer treatment is being delayed for so many.
Its been getting my goat for nearly a year and a half now. If one more person seeks to give me advice about detoxing/eating more beetroots/drinking a magic liquid that is the equivalent of household bleach, I’m going to explode like that volcano that was on the news recently
So, in aid of helping everyone make sure they are well-informed and know what to watch out for when looking into trying different routes for cancer treatments, please take a look at this link, which breaks down how you can tell if information/what is being advertised is potentially misleading, inaccurate or even untrue:
cancer.net/blog/2020-09/how-tell-if-cancer-information-social-media-%E2%80%9Cfake-news%E2%80%9D
Some further thoughts I’ve had on the whole subject over the past 18 months:
So I quickly compiled some things to be mindful of in the hope it will help others. I have experienced all of this myself at some point:
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Sometimes when we’re all in these support groups and want to support/help each other, we can inadvertently share misleading/inaccurate/untrue information about certain websites, products or treatments. Or encourage others to explore the same. It might not be helpful and be causing more harm than good (especially where there’s no evidence to suggest the treatment/therapy/supplement is proven to be safe, let alone think about curing or causing remission).
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We’re all very vulnerable psychologically and emotionally, because of what we’re going through. Being vulnerable like this means we’re more open to receiving information or ideas that give us hope, even when that information might be completely misleading, inaccurate, or even untrue.
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Getting bombarded with loads of “advice” to change diet/detox/take supplements/buy books/pay lots of money to try random therapies - which makes you feel like you have to jump on the bandwagon “just in case” there is a chance that it can cure/treat/cause remission. This one really stresses me out the most.
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I’ve discovered there’s a really beneficial element to being able to sift through info and work stuff out for myself. For example, at the beginning of last year, I spent around £400 on supplements because I was panicking and believing everything I read/was told by other cancer patients/people in support groups/websites on the internet. Yesterday I was having a clear out and chucked ALL of it in the bin. Some of the bottles hadn’t even been opened. I’d also found out over the course of last year that some of those supplements were also possibly what had contributed to my first line of treatment not really working.
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If you’re the sort of person who likes to feel in control and be well-informed, sifting through info yourself using the technique offered in the link above feels like a healthier mental and emotional process. I found that I get more of a feeling of being in control, creating a solid base for my own personal decion-making, or reinforcing what choices I want to make when it comes to seeking treatment.
So please, always question everything you are told, whether its through modern medicine or alternative medicine. Try and make sure the information is from as reputable a source as possible, preferably backed up by some clinical/scientific evidence. And if there is evidence for alternative therapies particularly, make sure that evidence is suitably reliable enough (for example, I once came across a clinical research paper that stated CBD oil reduced tumour burden in breast cancer patients. When I looked into who the authors of the paper were, one of the guys turned out to be a doctor branching out into alternative therapy and peddling his own brand of CBD oil. Right, bet he’s making himself some nice cash now.)
Anyway enough of my waffling rant, hope some of that has been at least somewhat helpful