Hi Taff

Many people, particularly non-scientists, make the mistake of confusing web searching with research. 

Anybody can spend £30 to buy a web domain, set up a website, and then write anything that they want on that site. What they write can be anything from pure gold to pure dross. In general there are no laws requiring that the information is accurate, and little to distinguish a good site from a bad site. That's why you're now finding confusing and conflicting information. 

Real researchers disseminate their findings in the form of scientific papers, which they present at peer-reviewed scientific conferences and/or in reputable peer-reviewed journals. The term peer-reviewed means that each paper is examined by at least two independent experts in the field before it is selected for presentation or publication. No one claims that this system is perfect, or that it can't be fooled, but it is generally self-correcting, since every paper can be challenged by other researchers after publication, and if proven to be wrong, the reputation of the authors can be seriously tarnished.  

None of this is cheap. It costs money to attend a conference, it costs money to publish a journal, and it costs money to buy a journal subscription. Professional researchers are supported by their employers. If you work for a university etc, then the library will have subscriptions to all the important magazine, either print or electronic copies, but if you're an amateur then you're cut off by the cost. And if by some chance you do get access to the papers, without the appropriate background knowledge, could you make sense of them? 

This system is the same whether we're talking medicine, or computer science, or nuclear physics, or material physics, or mathematics, or geology, or astromony, or even Egyptology. Indeed, any branch of science works the same way. However, whereas there are very few people who propose an alternative view of computer science, there are vociferous minorities who attack all branches of medicine for various motives. 

And here, I think, is the difficulty you'll face in writing your articles. Unless you're already au fait with the state of cancer research, and unless you have access to the journals and their back catalogue, and unless you're able to attend conferences, then you'll have a hard time finding information you can trust. Instead you'll be reliant on information that is filtered by other parties without the ability to decide for yourself how reliable it is. And if that's the case, then how reliable are your articles going to be? 

Hi taff ..

I so understand where and why your comming from ... I too love this cancer research site, and know this is a no go area ... but like you, I would love to talk to someone here of my own personal journey ... and if only they could reach out to us, on a private e mail, and listen to our experience. . 

The feelings are growing, for so many .. please let's share this together ... no one's saying cure, no one's saying instead of .. we only want someone to listen, and the words along side ... not instead of ...everyone could learn so much, if they let us in, on a special website, just for feed back ...

I feel really sad, how it's just not spoken of any more ... the words wer in this together, no one can find out anything if the subjects taboo ... all of us on here ... are here, like you reaching out ... together ..

Please take this to from how it's meant ... with caring too ... chrissie x

Hello Taff

Thanks for your post.

Surgery was one of the first techniques developed to treat cancer and has been used for many years before other treatments were discovered, (there is even evidence that the ancient Egyptians used it to treat cancer).  It is fair to say that in past centuries it didn’t go through double blind randomised controlled trials like new treatments would today, but in spite of this there is plenty of evidence for the situations where it works and equally importantly when it isn't likely to be helpful. 

For example, we know from collecting survival data over many years, that for many solid tumours, if they are operated on at an early stage before they have had the chance to spread, there is a much greater chance that the person will be cured.  We also know that in many cancers if they have already spread surgery may not be appropriate unless used for symptom relief. 

There have also been and are ongoing trials looking at comparing various surgical techniques to see which ones are best, comparing it with other treatments and seeing if the extent of surgery can be reduced. 

To address your question about ethics, in situations where there is already strong evidence that surgery is likely to cure someone or improve their situation, to conduct a trial comparing it with a new treatment, there would have to be compelling evidence that the new treatment was likely to be at least as good as surgery.  Otherwise it would be unethical. 

We try to be as honest as we can about the strength of evidence we have on different treatments.  Alternative therapies are often presented in a way that skews or misrepresent the evidence or are based on anecdote or a philosophical belief that isn’t evidence based.

I hope that helps to make the situation clearer.  The following article might also be interesting for you to have a look at.  Unfortunately it doesn't seem to be freely available to people without a subscription to the journal it is published in, but your local library may be able to get it for you or you may be able to buy it online. Here is the reference . L Wyld, A Ricardo, et al. (2015), "The Evolution of Cancer Surgery and Future Perspectives",   Nature Reviews Clinical Oncology, Volume 12 pages 115 -124  

I hope that helps, dont forget you can call our helpline too if you want to talk things through 0808 800 4040

Martin

Excellent, thanks very much Martin. That's the sort of thing I was looking for, a way of challenging the assertion regarding surgical trials.

I hope I'm correct in understanding that the data collected from the results and follow-up of ongoing surgeries, stands as the evidence of the efficacy of various surgeries in specific circumstances.

Although not the same as a double blind trial, it stands as sufficiently persuasive to justify the 'all' claim, here on cancerresearchuk.

Again, many thanks

Taff

Its probably easier to have a conversation about this Taff.  Please do call the helpline and we can have a chat.  I am available now.

Martin

Hi Tele,

Thanks for your informative input and I agree, I wouldn't really call my googling research.

Regarding the articles, they're not intended to be definitive and nor will they be trying to replicate the informative sites like cancerresearchuk or myelomauk but will rather be my opinion on the stuff that's out there, how I understand things and how they might apply for me.

For example, I'll never 'juice'. I've never even eaten a salad. But I could mention the Gerson Diet and opine on it's relevance to me. Which leads on to my thoughts on further reading about genes and microbes etc.

For people reading, who are after definitive stuff, I can direct them to some further reading that I've found interesting. All very low level stuff but it's important that I don't make any claims or advocate any particular thing.

Alternative sites make a lot of unsubstantiated or poorly supported assertions. I was investigating here whether one of them actually stood up to scrutiny and have been rewarded with the answer - it doesn't.

Taff

Hi Chrissie,

I'm interested in your 'My Story' and I was actually intending to ask if anybody would like to write theirs, for publication on the web, sometime in the near future.

Get writing. As many words as you want but preferably 2,000 plus. My own, just the cancer bit, was about 3,000 and went from pre-diagnosis to completion of treatment and remission.

It will be edited should you wish to partake but only to correct spelling and punctuation, in order to make it easier to read for people. You'll sign off the edited version before it's posted.

There is no time frame, take as long as you wish.

I found it felt good to get it all down and I think it would be even more beneficial for others, given most are not as cognitively impaired as I.

All the best

Taff

Hi Taff.

If you want to write, then there's much that could only be written by you, if you can just find it and your voice.

What you have in mind right now is a pointless project that will only increase the confusion in an already confused world. Don't fritter your efforts away on this - do something original instead. 

Thanks for the offer Martin but I prefer to do it in print, thus making it available to everybody. My understanding or misunderstanding of things should be open to all to comment on or criticise and any answers are for everybody.

It's not a big thing. I'm in no way worried or concerned and for me, I have no intention of trying alternative anything.

I was given two sorts of cannabis oil shortly after diagnosis but didn't try it as then there'd be no way of knowing the efficacy of the conventional treatment I was having. And the conventional treament has put me in remission. Complete remission. I have confidence in my team, even when the odd one makes the odd mistake, such as forgetting to call me.

The response to my challenge was informative and persuasive and I am content.

Thank you

Taff

I like that advice and tend to agree. It's an exercise in trying at the moment, I've no idea if I'll be able to continue.

I can't think in the abstract, all my thinking is triggered. I do think that I can write coherently but how interesting it is to others, I don't know.

I know I seem to look at things from a different perspective than most, which is probably why I can come across as . . . er, I'm not sure. But I obviously do.

I quite like the 'My Story' idea, which might give the opportunity to opine on various stuff.

Can you expand on your thoughts perhaps? I'd appreciate it.

Taff