Award winning Neuroendocrine Cancer Patient Advocate. Diagnosed with Metastatic Neuroendocrine Cancer in 2010.
“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.
Graphic courtesy of Emily McDowell Studio
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 I know from my association with their research capability, that they take an evidence based approach and do not publish these things lightly.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”
What is Chromogranin A? Chromogranin A (CgA) is an acidic protein released along with catecholamines from chromaffin cells and nerve terminals. This statement alone might
Diagnosing Neuroendocrine Neoplasms (NENs). It’s no secret that Neuroendocrine Neoplasms (NENs) can be difficult to diagnose, particularly well differentiated slow growing types (NETs) which can
What are Rectal NENs Rectal Neuroendocrine Neoplasms (NENs) (rNENs) account for approximately 1-2% of all primary cancers in the rectum. The other main cancer types
A new clinical trial post. What is Terbium-161 (161Tb-DOTA-LM3) (Beta plus). Terbium-161 is a radioactive substance. DOTA-LM3 is a novel somatostatin antagonist targeted using somatostatin
Background. It’s important to note that not every type of Neuroendocrine Neoplasm will get the same tests due to the heterogenous nature of this cancer type.
The NET Detectives is an awareness post. Detecting NETs In general, it’s probably true to say that Neuroendocrine Tumours (NETs) are difficult to diagnose. Some
11 thoughts on “The trouble with the NET (Part 2) – Alternative Therapies – what’s the harm?”
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.
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.
You are very welcome! I was happy to have found you and this information was terrific. I’m a follower of yours now! 😀
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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 😀
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?