Understanding alt med "testimonials" for cancer cures

I think this is one of the posts Rosemary might be thinking about.

http://community.breastcancer.org/forum/79/topic/772272?page=1#post_2533170

I think this is one of the posts Rosemary might be thinking about.

http://community.breastcancer.org/forum/79/topic/772272?page=1#post_2533170

My eldest son is an atheist and skeptic who attends meeting and regularly debates.  He honed his debating skills at university, sitting in the christian area at lunch time, debating from an atheist perspective.  Many of those Christians are now his friends as he always maintained a respectful and friendly attitude, and yes, he's still an atheist and I don't think he ever persuaded anyone to change their position apart from his boss who is no longer a creationist. 

I have always been open to alternative medicine and started studying naturopathy when I was 25 but didn't complete the course as I needed to earn a living and I became disillusioned with the lack of accountability from many of the staff and students at the college which was run by some lovely GP's.  I also have an interest in the ideas taught by many of the Eastern religions which I find are compatible with modern psychology.

An a result of my very logical but friendly son debating these issues with me regularly I have come to really appreciate the enormous gains that can be made when people with different ideas come together with an open mind and heart to find the best ideas without having to tear each other down with mocking, negative assumptions, insults and anger.

I believe the research methods used to determine the best treatments require a major overhaul as they are heavily biased towards elitist views that only the current system of research is acceptable and any ideas presented by people with less than the highest academic credentials must be inferior and all testimonials are useless. 

Since the best evidence based medicine cannot cure most metastatic cancers, it seems to me that if an alternative form of medicine is producing a lot of people who say they have had a long term remission from their cancer then even if only 5% of those prove to be due to the alternative method, that should be sufficient to warrant a proper investigation.   To not follow up these "testimonials" is surely a crime against all of us who are at risk of losing our lives to cancer, and that may be a substantial proportion of the population. Is it one in five who die from cancer or similar?

I have more to say but my son is home from interstate for a brief visit so I need to spend time with him. 

Metastatic Disease and Statistics.

We all know that there are roughly 200,000 people diagnosed with BC each year in the States, with around 40,000 deaths. Statistics in other developed countries have a similar ratio of approximately one death to five diagnoses.  I often get frustrated at the lack of statistics for the number of people diagnosed with metastatic BC each year.  Something tells me that the figure would be so close to the number of deaths that it would be embarrassing for the government to admit to such an obvious failure to cure metastatic disease.  They would rather focus on the successful five year early cancer rate and proclaim how well their treatments have worked.

From the point of view of testimonials and conventional cure rates, or disease free survival, I feel that if only metastatic disease was counted then we would get a much better idea about which treatments or remedies showed promise and which are good in primary cancers but could not cure MBC.  In that way it would be clear that chemotherapy has close to 100% failure rate at curing MBC.  Of course the ability to shrink tumours and prolong life is also a worthy goal but a cure is the ultimate goal.

I find it frustrating when people who have had early BC use their own disease free survival to claim their treatment cured them, whether that treatment was chemotherapy or a remedy such as the Budwig diet, since statistically they have a good chance of surviving with surgery alone, so nothing can be proven individually, only by doing large studies can a general claim be made.  For that reason, I think that a new standard needs to be set up whereby people can only legitimately claim to have cured cancer or gone into long term remission when they've had surgery for early cancer or long term remission from one of the deadly cancers including metastatic disease.

I'd like to see some sort of register set up so that people claiming to have recovered from cancer need to produce pathology and doctor's references at initial diagnosis, metastatic diagnosis, after treatment and then at five year intervals to prove their cancer free status. This would in no way prove any particular treatment of course, but if the various treatments and remedies could be recorded then statistical studies could begin to show which treatments or remedies were associated with long term survival or complete remission so that useful studies could be designed.

If these last posts of mine get lost in the debate then I will probably start some new threads as I feel it's important to all come together to promote an open and friendly debate to ensure that the true cost of metastatic cancer is statistically noted, and a better system is developed to promote relevant treatments without elitist attitudes stamping all over any different ideas. I'm not just referring to alternative remedies being dismissed but also the long list of past important scientific discoveries that were initially dismissed out of hand as they went against the status quo. 

I hope my meaning is clear as I seem to trip over words and spend ages looking for the right terms that will accurately express what I'm trying to say and I'm not sure I've succeeded this time.

Thenewme, I didn't give a testimonial in favor of Budwig.  I said it DIDN'T work for me, though I did know others for whom it did.  I don't know what else those people were doing, but I do know that they were supposedly following the protocol in its entirely which does NOT involve any sort of pharmaceuticals and/or supplements, so if they were being honest, the protocol was the only thing that could've helped them.  That was not, however, my experience.

Personally, I don't care if that chemo tx is based on evidence ... that evidence is not based on MY body, MY metabolism, MY cancer.  So they shot me full of chemo drugs, even in the form of a stem cell transplant, and guess what didn't work?  OK great, there was some evidence (and in the case of the stem cell transplant, it was falsified) that it might work, but it didn't for me.  What's the difference then?  Who cares if it's evidence or testimonial?  You still can't translate study results into an individual's experience, ever.  Sometimes it works as advertised ... sometimes it doesn't.  Regardless of whether it's presented in the form of evidence or as testimonial.

xxoo

Melissa

Wow, Calamtykel... "I'm absolutely appalled at the fact that most oncologlists are COMPLETELY and 100 percent ignorant of anything except medicine."

That's pretty harsh and absolute, dontcha think?  

Also, of course some testimonials are true!  LOTS  and lots of them are!  Every single one of us has our own 100% true "testimonial," but to rely on a testimonial (or two, or a thousand, even) as "evidence"  just doesn't make sense when you're talking about something like treatment for cancer.  Rely on testimonials for soap that cleans better, or toothpaste that tastes fresher, or a new car that performs better.  But testimonials for treatment of a potentially life-threatening disease? That's what the original post was all about - understanding and evaluating testimonials. 

Joylieswithin - I'm truly sorry you seem to think those of us who disagree with any particular post are trying to disturb the peace. 

Nothing could be further from the truth.   Personally, I speak out because I do care.  For me personally, misinformation and quackery should never be ignored or unchallenged just for the sake of peace.  Lots of us come here for scientific and evidence-based facts, and facts and peace aren't mutually exclusive.  Rose-colored glasses and "feel-good" mushy pats on the back have their place, but so do facts - even when they're not nice facts.

thenewme, my mushy pat on the back for jlw was because i think the issue needs to be explored. i think you are both asking for the same thing!: the requests for scientific and evidence based facts on treatment choices....if science could document alternative only outcomes, they would, but there is the medical ethics problem where a standard treatment has to be included.  how do we here, discuss alt treatments/testamonials/personal outcomes? without continuously  refering back to the lack of scientific evidence. i was discussing this issue with an indian friend last night, who was telling me about the 'success' of natural treatments for cancer etc in india. he is convinced of the success of certain treatment protocols in india, the 'testamonials of 100's of 1000's of people, at what point do we listen? at what point do we stop listening and look for 'facts'? he stated that the U.S. wanted to patent tumeric,  but that the indian government objected and won their 'case'....the conversation was facinating.....and he gave detailed information on very old dietary healing regimes, i would like to discuss this new information, and research it with like minded people... if we want to discuss the potential benefits of natural therapies, how do we go about it?

Thatslife,

Very interesting on turmeric. We have a doctor here in Texas researching Turmeric through Baylor Medical Center. He has ran several double blind studies on Turmeric's effectiveness, and has conclusive evidence that Turmeric does help in certain instances of tumor progression. 

Interestingly, the medical news community that showcased this data pointed out that these studies will help the pharmaceutical field create drugs that *mimic* Turmeric's effectiveness, i.e. because of this substance is not patent-able, a pharma company will chemically reproduce something that is similar to Turmeric, but not Turmeric.

That is what often happens in the drug world.... natural substances cannot be patented, so Pharma companies will create "the next best thing" in a lab.   Claps for the Pharma companies for chemically reproducing this stuff, but I'd rather use the "real thing" if it's available....

Anne, my point about studies is that we need to have large studies of people with cancer to find out what different treatments and remedies they use and the results.  I think they are called observational studies.  Then we can find out which foods, supplements, herbs, physical therapies such as yoga, counselling, personality types etc are associated with improvements, disease free survival etc.  In those very rare instances of a complete remission from metastatic disease, the potential reasons would already be documented.  It seems criminal that those people who have so-called spontaneous remissions are not studied as they surely hold the key to any cure.  

When Ian Gawler returned to his doctors to get the scan results that showed complete remission from a deadly cancer, he was met with anger and disbelief that anything other than conventional medicine could have cured his metastatic osteosarcoma.  That was decades ago and now there is more acceptance of complementary and integrative medicine but I believe it's mostly an afterthought and not taken seriously enough.

It bothers me when those who have had surgery for a primary cancer then attribute their continuing remission to chemotherapy or any other remedy and I'd like people to stipulate whether they had surgery and the stage of their cancer, which was in Orac's blog, so I'm basically agreeing with him.

What I object to is the rudeness and arrogance of his other blogs.  I don't think someone who lumps most natural medicine providers under the derogatory terms "quack" and "woo" should be quoted here as it is too inflammatory, like an atheist visiting a religious thread and calling them names.

I also find it insulting of people to put such basic common-sense information in the alternative section, implying that we aren't intelligent enough to see that for ourselves.  Unfortunately the people who don't understand the pitfalls of unsubstantiated testimonials are the very ones who will not listen to reason and it's no good beating them over the head with facts.  They need to be befriended and treated with respect if they are to be in the frame of mind to listen to opposing views.  So all these pleas for common sense and logic are only preaching to the converted and alienating those who could be helped. 

joy, ian gawler is interesting.  his retreat is nearby here. i looked into it, quite costly, and does involve the very alternative treatments that have shocked some here....i spoke to my x counsellor about him (and the football player here, who is at the moment trying to stay alive using ian gawler's protocol..) bear in mind my x counsellor was an oncology nurse for 20 yrs, and is very pro chemo/standard treatments. i had to laugh, because when i bought up ian gawler, she nearly jumped in my lap to reply. she stated that when he was first diagnosed he was told there was a 5% chance he would survive his cancer. he did change his lifestyle/diet etc after having chemo. and his success and survival were attributed to his lifestyle changes etc...but my x counsellor said that his situation was studied recently (im amazed they re opened his history) , and quote: 'they now know that the chemo he had way back then gave him a 60% chance of survival, as opposed to the 5% originally thought'... ?...i am following Jim Styne's progress, and have so much admiration for his strength of will, and faith in that protocol. though he has had numerous surgeries and chemo, i think as well?

and yes, the rare spontaneous remissions facinate me. i want one too.

luan, they are not secrets...lol....just an approach to food that is very ancient..and interesting, because some of the things my friend mentioned i have seen in studies here recently, for example, boiling coffee rather than infusing. i hope we can go into more detail soon on joys new thread...hint hint joy...