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Ronny Allan
Certain popular ideas about how cancer starts and spreads – though scientifically wrong, can seem to make sense, especially when those ideas are rooted in old theories. To a certain extent, it can be the case with treatment too. But wrong ideas about cancer can lead to needless worry and even hinder good prevention and treatment decisions.
In one study, a surprising 40% of Americans believe cancer can be cured solely through alternative therapies, according to the American Society of Clinical Oncology (ASCO)’s second annual National Cancer Opinion Survey. In a similar study in UK, the NHS blamed social media for the spread of fake healthcare news. Unfortunately, social media ‘misinformation’ includes ‘alleged’ cures for various ailments including cancer. I think we’ve all been there, we check twitter, Facebook, Pinterest etc and we find the ubiquitous miracle cures for every illness under the sun. Easy to find, easy to read and worryingly, easy to share. Surely these cures must be true, after all…..it’s on the ‘NET’.
Has wide access to the internet exacerbated this problem?
The rise of the (Inter)NET has allowed people to use ‘social technology’ to help shape the world’s events and culture. Additionally, the NET has increased the speed of how relationships develop, the way information is shared and (whether you like it or not) how influence can be leveraged for gain. Facebook has taught us new ways to communicate and collaborate through features like feeds, profiles and groups. At the same time, smartphones and tablets provide mobile and instantaneous access to information from any location. Whether you like it or not, we are witnessing the power of social media and its effect on society. However, the ‘NET’ can also provide ‘misinformation’ and it’s pretty good at it.
When I was diagnosed with metastatic Neuroendocrine Tumours (aka ‘NETs’) in 2010, I took to the ‘NET’ to find out about my ‘NETs’ !! However, I soon found out the ‘NET’ is potentially more dangerous than my NETs. Put a foot in the wrong place and ‘boom’. Not only can you get easily lost but you end up with dubious information which looks pretty credible. Moreover, in some cases this can be unnecessarily stressful and upsetting for some. Fortunately, I had worked with information technology for years and combined with my sceptical but inquisitive nature, I was able to overcome this problem. I’m very careful where I look and now use that to my advantage, along with many other savvy cancer patients.
The champion ‘myth busters’ are the world-renowned Cancer Research UK but there are many other similar sites in North America and beyond and I always check these sites when I see something in the media which sounds too good to be true. For example, there is a 30-year-old myth that sugar feeds cancer cells to cause proliferation and this seems to be shared by many patients as something which looks true. It is NOT true and the biggest cancer advocate organisations will all confirm this. But this myth persists day in day out. Although research has shown that cancer cells consume more sugar (glucose) than normal cells, no studies have shown that eating sugar will make your cancer worse or that, if you stop eating sugar, your cancer will shrink or disappear. However, a high-sugar diet may contribute to excess weight gain, and obesity is associated with an increased risk of developing several types of cancer – that is a totally different problem (causal vs correlation). This is one of a number of cancer myths that seem to continuously patrol the NET, including on patient forums.
Take a look at Cancer Research UK’s Let’s get to the bottom of it – 7 common cancer myths unpicked.
Whilst you’re there, take a look at their Science blog as they always follow up the most recent headline-grabbing newspaper articles claiming to have found the cure for cancer (again). Cancer Research UK will always provide balanced commentary on these claims – they believe in evidence not headline-grabbing. Ditto on my sites too.
Cancer Research UK is not alone in trying to help dispel some of these myths – you can also fact check on the big US site Cancer.Gov – see their myth-busting article here.
I also like the list from Cancer.NET – American Society of Clinical Oncology (ASCO) – read it here. (Science Fact or Science Fiction).
Hope is great, false hope is not.
“Certain popular ideas about how cancer starts and spreads – though scientifically wrong, can seem to make sense, especially when those ideas are rooted in old theories. To a certain extent, it can be the case with treatment too. But wrong ideas about cancer can lead to needless worry and even hinder good prevention and treatment decisions”
Part 1 – Cancer Myths – click here
“Those selling and promoting alternative treatments rarely discuss the risks, especially the biggest risk of all – missing that small window of opportunity to hit cancer with the best conventional (and proven) treatment possible”
Part 2 – Alternative Therapy risks – click here
“But it works… a friend of a friend put it on Facebook”
Part 3 – Miracle Cures – click here
“Hope is great, false hope is not”
Part 4 – Cancer Kills but so can Fake Cures – click here
“Certain popular ideas about how cancer starts and spreads – though scientifically wrong, can seem to make sense, especially when those ideas are rooted in old theories. To a certain extent, it can be the case with treatment too. But wrong ideas about cancer can lead to needless worry and even hinder good prevention and treatment decisions.”
Part 5 – Food and Diet Myths – click here
Food and cancer. Check out World-Renowned NET Specialist Dietitian Tara Whyand’s video on Sugar and Keto
The ‘NET’ can spread …….. false hope
Part 6 – The trouble with the NET is that it can spread ……. false hope – click here
This problem even happens in the NET world – read more on common myths here.
Disclaimer
I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me.
Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional.
Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.
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A funny thing is that it is often a huge advantage if you have another native language than English 😊.
The reason is most of all the misinformants often use English to sell their waste to most people possible.
When I search for trustworthy information about NET, I use Danish search words, and even though there is always a huge load of bull-feces found by Google, I can easily find good results on the 2-5 really trustworthy sites at the top.
Most of the misinformation is in Google Translated articles, and if not other, they are frequently fun to read just because of the bad translation 😊.
On the back side it is of course very difficult to find ANY relevant information about specialised NET types, and to someone who’s native language is not English, it can often be tricky to distinguish a professional piece of misinformation from something scientific. But to be honest… the scientific stuff I find about Calcitonin secreting pancreatic NET is typically pointing in all directions anyway 😎
Good point. For me that is another clue to something suspicious, bad English grammar, spelling etc. Thanks for the comment. I’ll keep a look out for calcitonin secreting pNETs stuff for you!
I have been in for treatment Lutetium I miss these posts and only just got as far as my computer today.
Ed you have made very important life changing decisions all your life. Educational choices, your career path, partners. You will have relied on the gut feeling for many of these decisions, all you can do and will have done in the past, is finally rely on your own instinct. You have loads of information, unlike some, think about it, and just do what you think is best; never mind other people, it is your body your life. Anyone you care for will I am certain support you.
It is hard but there never will be a right answer and we are all in the same boat, with mind boggling choices. This is when you can reach out to others in the same position, like on this site and by doing that you can sometimes make a better decision after considering their experience or input.
Stay calm and look after yourself.
Christine
Awareness is crucially important. I ended up in hospital for almost two weeks rather than four days. A young Doctor thought my flushing was the menopause although I was 59 and had had a medicaly recorded menopause at 37. He had overheard a conversation with a nurse asking if I had tried any menopause anti flushing meds or herbal remedies for my carcinoid. He jumped to a wild conclusion which resulted in my incorrect treatment and me feeling very ill. He admitted later he had no idea flushing was a symptom of carcinoid. I have frequently found myself against a brick wall. One was telling nurses that sudden elevated blood pressure was a symptom of carcinoid and should be recorded. They peferred to walk a way and replace the machine or take a new reading in ten minutes. We need to educate medical staff as well as other patients on symptoms, as many untreated symptoms can cause unnecessary death. Thanks for all your information, you do an amazing job.
Thank you for those kind comments. Hope you will also like my facebook site where I post news in addition to blogs. Keep sharing, it’s the only way to generate more awareness.
absolutely Christine, there are initiatives in UK and USA to educate medical staff but it’s not a quick fix and it’s not easy! Check out this blog: http://wp.me/p4AplF-z1 and this one: http://wp.me/p4AplF-xl and this one: http://wp.me/p4AplF-xh
In the meantime, we need to continue to be informed (intelligent) patients as per this blog: http://wp.me/p4AplF-A2
thanks for supporting my blog, it’s much appreciated. Are you also following my associated Facebook page here? https://www.facebook.com/pages/NET-Cancer-Blog/476922399112723
just click ‘Like’ on the link above to follow short blogs in addition to these longer formal ones.
The worst part for me is being my “own doctor”. Will Nanoknife work? Embolization? If so, what kind? Surgery? Radical Surgery? Every doctors says something different. I am starting to think I have to make my “own plan” and look for qualified doctors to execute it. Otherwise, they will just take the easiest route with the least amount of risk. 🙁 I wish I had more medical options.
I think even the most stubborn patient advocate still needs a Doctor, I know I do. The trouble with NETs is finding the right one.
Yup. It’s a mess. The thing is…there is no standard protocol and each case is so different that it’s almost impossible to know when you have the right doctor…at least for me.
I read the “don’t believe the hype” article and thought some of it was good but some of it seemed contrived. For example, to say there are no super foods that prevent cancer…..I’ve seen plenty of information that shows support the idea of certain foods fighting cancer. Here’s a link from my site….tell me what you think. 🙂
http://www.carcinoid-cancer.com/master-list-cancer-fighting-veggies/
Take a moment and watch the video by Dr. Greger. He is highly respected. Here’s a blurb about him. In the video he explains a medical study that shows certain foods, if I remember correctly, killing cancer.
Dr. Greger is a physician, author, and internationally recognized speaker on nutrition, food safety, and public health issues. A founding member of the American College of Lifestyle Medicine, Dr. Greger is licensed as a general practitioner specializing in clinical nutrition. Currently he serves as the public health director at the Humane Society of the United States. Dr. Greger is a graduate of the Cornell University School of Agriculture and the Tufts University School of Medicine.
Any how, thought you would be interested.
Have a good Easter,
Ed
Hi Ed, sorry to have taken so long to respond but I’ve been on holiday and wanted time to read your comment properly. As I can’t sleep (jet lag!), thought I’d take a look. I disagree that Cancer Research UK would intentionally contrive something – rather they are an evidence based organisation and they simply say there is no scientific evidence to support that superfoods “cure” or “kill” cancer. They are not suggesting that so called “superfoods” are bad for you and do say they are good as part of a balanced diet. The key point I make based on your input is the suggestion that superfoods can “cure” or “kill” cancer is not based on any scientific foundation – check out this link http://www.cancerresearchuk.org/cancer-info/healthyliving/cancercontroversies/superfoods/
Where did you go!? I hope it was somewhere nice. I didn’t intend to imply that they were deliberately deceiving their audience but rather that the idea seemed pieced together based on the standard and conventional wisdom. There is a reason that alternative medicines are considered alternative….most conventional doctors do not accept them as valid. BUT some doctors do. They are outside the mainstream but that doesn’t make their ideas incorrect.
What did you think of the short video in the link that I sent you? I think you will be surprised to see that there IS evidence that certain foods not only prevent but kill cancer in vitro and in vivo. Take a look. It’s a really short video. Honestly, it swayed me to accept the idea as fact rather than wishful thinking.
Calfornia, great time. I get you but I trust Cancer Research. There are too many newspapers prepared to publish articles based on zero scientific evidence. The power of newspapers to influence worries me nowadays – the latest one being pineapple! http://scienceblog.cancerresearchuk.org/2015/04/04/news-digest-prostate-cancer-family-tree-pineapples-walnuts-and-more/
California! You were state-side?! Awesome. What was your favorite bit? Hey, the pineapple lady is a nut. The video I sent to you was posted by a doctor where he reviewed major scientific studies showing apoptosis. 🙂 Two different things. But, hey…everyone has to make their own choices. I’m not choosing food over chemo but I am supplementing my chemo with foods shown to fight cancer. Hmm…now I”m in the mood for pineapple. Thanks a lot Ronny!!!! 🙂
Just don’t eat it 72 hours before or during a 5HIAA 😁 I love pineapple
Sadly I feel such press gives false hope and syphons off money from other needed areas. I recently met someone who was utterly relying on the power of fruit vege and seeds to her detriment. They did harass the NHS to send them to a nutritionalist so they could learn more but promptly ignored everything as it did not fit with what they had read. Some foods were supposed to be increased as they were lacking various nutritional elements but were not. This person continued on to try to enroll others on what was clearly a poor diet and succeded. The impact of this will cost the NHS somewhere down the line and who knows how far the poor diet will spread. Unfortunately one persuasive person can pull in many. The press will of course never pay and they have had their misleading frequently wrong headlines for the vunerable read.
It’s important to get your information from credible sources. I know for me, I only seek to supplement my current cancer treatment with diets rich with foods that are known for fighting cancer.
Understood Ed. Take care
You are so right Ed but some people are so desperate they are glad of any treatment and later realize they made the wrong decision. This is where you and Allan help so much by pointing out information which can be so difficult to find. thanks both of you.
Ronny 😆
Wow. No need to thank me! To quote the movie…I’m just paying it forward. 🙂 Carcinoid cancer is so confusing to have…you never know if you’re reading something that will work for you or for other cancer types. It’s crazy.
The misinformation is a direct parallel to the misdiagnosis of carcinoid. Carcinoid can be misdiagnosed as IBS & or Crohn’s. The same may be true for recently symptomatic patients. When searching online, they may conclude their symptom constellation to fit a lesser ailment. The best approach is multifactorial- taking what you know, what you researched, letting doctor(s) examine & diagnose, begin treatment or seek second or third opinion. With NET/Carcinoid flushing & other hormonal cues as well as a serotonin metabolyte test may distinguish their coincidence with IBS & Crohn’s symptoms. Rare cancers are not out of consideration in 2015. Right? Afterall, this is social media age! Let me tell you firsthand- very few have heard of carcinoid in particular. Outreach on a base level with basic information is still needed.
You are correct my friend, awareness is one thing and finding the accurate information is another (along with finding a doctor who understands the disease). Where it fits with the blog subject, I try to put sign posts into my blogs to take people to the most reputable sites where potential patients can get the right information without having to wade through some less than reliable sites. I sometimes have to give these sign posts directly to people who contact me privately or in a comment such as yours. This makes me happy if that person then gets some focus on the internet. Also, I’m seeing an increasing amount of hits in my blog statistics referred from ‘google searches’ which I see as a good sign that the ‘awareness’ is getting out there and I’m playing a little part in it. Some of these might be accidental visits but I still count that as awareness (…beyond the NET Community).
Many thanks for taking the time to comment – this is much appreciated. Thanks also for your support on other media!