Translate
Subscribe to Blog via Email
Ronny Allan
“But it works… I read it on the internet!”
You may remember my article entitled The trouble with the NET (Part 1) which was a lighthearted but still serious discussion about the dangers of self-treatment on the internet. Linked to that blog was a very popular article written by the scientists at Cancer Research UK debunking some cancer myths which seem to regularly patrol the NET and social media.
Many well meaning people will send you articles they saw on the ‘NET’ about this and that treatment which claims to cure cancer. They also post them on social media increasing the reach to thousands of people, some of whom are not in the right frame of mind to see the risks. The vast majority of these ‘suggestions’ will be lacking in any proper and formal scientific research and there is normally a product or book for sale attached to the link. In some instances, these ‘miracle cures’ can actually be dangerous for some.
In a follow on article, Cancer Research UK warns of the risks in Alternative Therapies which is written in a similar vein. I pay great attention to what these guys say. I know from my association with their research capability, that they take an evidence based approach and do not publish these things lightly. Please note Alternative Therapy is not the same as Complementary Therapy. Alternative therapy is something used instead of conventional approved treatment, complementary therapy is something used in addition to conventional approved treatment. Nonetheless, any therapy which is not approved can be dangerous to cancer patients.
One bonus and very interesting aspect of their article is that they discuss the Steve Jobs issue of initially opting for alternative treatment rather than conventional, excellently making the point that he did not have Pancreatic Cancer, rather he had a Neuroendocrine Tumour (NET). We all know this, but many newspapers, magazines, TV commentators and bloggers frequently get this wrong.
One of the big selling points advocates of alternative therapies use is to claim that conventional treatments are ’toxic’ while their favoured treatment is ‘natural’, implying that natural is somehow better. In analysis, that is a fallacy. It’s easy to get sucked into promises of ‘cures’ and ‘remission’ by using herbal remedies, diets, potent supplement, etc (the list of endless). However, if these things really worked, all Oncologists, specialists and major cancer centres would be advising this too.
“But it works… I read it in the news!”
Stories in the news about alternative therapies are usually framed in the words of a single patient talking about their own cancer journey. But this is neither scientific proof nor any kind of guarantee that a treatment is effective or safe. People pushing alternative therapies frequently wheel out stories from ‘survivors’ who are apparently alive due to their treatments, yet without providing solid evidence to prove it is true, solid evidence that the actual ‘miracle’ drug was the reason for the improvement rather than something else of a previous or concurrent conventional treatment. This raises false hope and unrealistic expectations that there is a hidden miracle cure that can be unlocked for the right price, or by eating exactly the right foods.
A UK newspaper ran a story of what can happen if you forego conventional treatment and try alternative instead. This is one example but there are clearly many more and ASCO touched on this above.
Those selling and promoting alternative treatments rarely discuss the risks, especially the biggest risk of all – missing that small window of opportunity to hit a cancer with the best conventional (and proven) treatment possible.
“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
In here I have provided links to trustworthy sources on some of the comments I see in patient groups.
Part 5 – Cancer Food Myths – click here
The ‘NET’ can spread …….. false hope
Part 6 – The trouble with the NET is that it can spread ……. false hope – click 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.
Top 10 Posts & Pages in the last 48 hours (auto updates) (Click the titles to read them)
Thanks for reading.
Personal Facebook. Like this page please.
Blog Facebook. Like this page please.
Awareness Facebook Like this page please.
Sign up for my newsletters – Click Here
My Diagnosis and Treatment History
Check out my online presentations
Check out my WEGO Health Awards
Check out my Glossary of Terms – click here
Please Share this post for Neuroendocrine Cancer awareness and to help another patient
Neuroendocrine Neoplasms – not as rare as you think
UPDATE AS AT 21 JAN 2023 – a leading US cancer organisation accepts that NETs are not rare I don’t like to gloat, but this
Neuroendocrine Cancer – early diagnosis, not early misdiagnosis?
Orginal post – 25th Nov 2014.The papers and social media seem to be full of awareness and early diagnosis articles this month. This coincided with
No Fear or Know Fear?
Edit: This article was written in 2015. Since then, I have moved to 12-month surveillance periods. I also changed the title as we are all
NET Syndromes – chicken or egg?
We’ve all heard the age-old question about the chicken and the egg? Scientists claimed to have ‘cracked’ the riddle of whether the chicken or the
Neuroendocrine Cancer: Fibrosis – an unsolved mystery?
What happened to me? Since I was diagnosed in 2010, I’ve always known about a fibrosis issue in my retroperitoneal area. It was identified on
Neuroendocrine Cancer – a difficult jigsaw
A few years ago, I received a request from a reader asking if I could write an article listing all the symptoms experienced by a
Neuroendocrine Cancer? – 10 questions to ask your doctor
On the day I was diagnosed, I hadn’t really thought about questions, the only one I actually remember asking was “how long do I have
Neuroendocrine Cancer: Beware But Be Aware
An awareness post from Ronny Allan BEWAREThere are a lot of scary diseases in this world. Take the lesser-known type of cancer that infiltrated my
Do you suffer from NET Brain?
A satirical look at the acronym or abbreviation “NET”. I wrote this after I noticed many non-NET people reading my blogs. The acronym ‘NET‘ (NeuroEndocrine
A cup of tea
I would also mention those who contributed to my “Tea Fund” which resides on PayPal. You don’t need a PayPal account as you can select a card but don’t forget to select the number of units first (i.e. 1 = £4, 2 = £8, 3 = £12, and so on), plus further on, tick a button to NOT create a PayPal account if you don’t need one. Clearly, if you have a PayPal account, the process is much simpler
Through your generosity, I am able to keep my sites running and provide various services for you. I have some ideas for 2023 but they are not detailed enough to make announcements yet.
This screenshot is from every single post on my website and depending on which machine you are using, it will either be top right of the post or at the bottom (my posts are often long, so scroll down!)
Related
Discover more from Ronny Allan - Living with Neuroendocrine Cancer
Subscribe to get the latest posts to your email.
I do not get any help for net Dana Faber Boston Ma cat scan show liver stomach and lymph glands been going there for 9 years. They money just testing. So all I do is spend a small fortune on alternative products.
can you give me an example of an alternative product? Are you not on any somatostatin analogues (octreotide or Lanreotide) ?
Great blog
Reblogged this on Cancer Isn't Pink and commented:
Important information regarding “miracle” cures through alternative courses of action targeted at the most desperate cancer patients. During my son’s course of life with pancreatic cancer, many suggestions have been offered by well-intented friends.
thank you for the reblog!
You are very welcome! I was happy to have found you and this information was terrific. I’m a follower of yours now! 😀
Just in the last two days I’ve had a couple of people recommend things that they’ve read on the internet to me. It’s very frustrating because I know they are trying to help, but they just don’t understand this cancer. I want to just scream sometimes.
I cringe at these, I wish the forums would police it a bit more. It prompts me to post this type of blog post. Feel free to respond with a link to my blog 😀
The link was broken this morning at 3 am in the US. You might want to check and see if they changed something. 🙂
checked and it works this end Ed but thanks for the tip off!
Yes, working now. Maybe they were rebooting the server?