Understanding alt med "testimonials" for cancer cures

Anonymous

Rosemary, I have not seen that one.  Please post it if you can find it.  Thanks,

Kathy044

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

rosemary-b

If drug companies have figured that one out everyone has. That is why I don't trust tetmonials. People get paid to say all kinds of things. I believe them if they come from someone I know and trst

Kathy044

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

luv_gardening

A FB friend of mine lost an enormous amount of weight using diet and a positive attitude but no drugs, herbs or any outside help.  She has a private FB page devoted to helping people get the right attitude to lose weight.

So far, her before and after photo's have been sighted on four different web pages for weight loss systems that she neither used or endorses.  Her pictures were stolen without her permission, with some fake testimonial written to support the product.  She certainly wasn't paid to write those lies or for the use of her images.

This is the seedy side of testimonials. Actually the web page she linked to was obviously fake, though it could easily be passed for legitimate to someone who wasn't looking carefully for the signs.

But there is another side to testimonials and evidence based science that I find very divisive and I'll try to explain in a separate post as my language skills are challenged and I need to think about how to word it. 

luv_gardening

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. 

Anonymous

Susan, thank you very much for your post



Joy, you are such a sensible woman and a joy to read !

luv_gardening

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.

luv_gardening

Thank you Luan, It took several hours for me to compose the last posts and I feel passionately about this.  I think my short break from these boards helped me to see the big picture, that is the need to end the suffering and deaths of millions around the world every year from cancer.  

If some people are willing to sacrifice their health or their lives trying out non-conventional remedies, then as sad as that is for them if it fails, their loss might not be in vain if their attempts could be recorded and studied in the hope that a real cure or multiple cures may be found.  Isn't this the whole basis of evolution?  Genetic variances are thrown into the mix and most don't make any difference or prove to be deadly, but then some variation is so successful that the new breed takes over from the old, or both varieties co-exist. Society has decided that only certain types of remedies are worthy of serious consideration, and only people of certain educational levels are able to produce results.

Forgive my lack of technical language as I left school at 16.  Had my parents not been so financially and emotionally poor, and the English higher education system so expensive and exclusive back then, I could have continued my education and my life could have been very different.

Anonymous

joylieswithin,  you make accusations without any kind of logical proof.  State your facts and references. How would you feel if you were a stage 4 breast cancer patient reading what you just wrote?

thats-life-

joylieswithin, i found reading your long posts one of the most rewarding experiences i have had at bco. i have been waiting for that exact discussion. i can see that you are very informed. it would be of great benefit if you started that topic, and i will keep an eye out for it. also, i would like to see a registry etc, especially for long term survivors of metastatic bc, and document treatment/lifestyle changes/diet/exercise and look for any links to long term survival with mets. never apologise for your language, it was a pleasure to listen to you.

Anonymous

That's sad.

Anonymous

Joy, i found your post extremely touching. I too so wish i had been given the opportunity to pursue a higher education, but instead was left to fend for myself at a fairly young age. My son, who i brought up alone, tells me how very proud he is to call me 'mom'. That is why i find so very offensive those who allude to a lack of intellectual "skills" on the part of others. Skills, that,s all they are "learned skills" which certainly don,t make or break a human being. Obviously, some lack a great deal of EMOTIONAL INTELLIGENCE. Scientists are now talking about social I.Q., as well.

You are an exemplary woman imbued with common sense and sensitivity towards her fellow "man" and those are THE priceless attributes of a decent human being. Edited to add, again, you are a joy to read

Melizzard

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

calamtykel

I believe cancer can be cured naturally sometimes.  Key words being "can" and "sometimes".  Not all the time.  But then neither can chemo and surgery.  I say this because I do not believe that just "Studies" show it all.  I know that from my OWN testimonial with illness.  I had very severe lyme disease.  To where I was unable to function.  I was unable to think - I had floaters in my vision and getting up in the morning - just moving, took 10 minutes to get out of bed.  I went on antibitoics four times.  Each time they worked less and less until they no longer worked at all after almost a year.

I was desperate and sought the advice  of a herbalist in my area who himself had suffered with lyme.  Using nutritional response muscle testing to test my body for the supplements (whole food supplements ) that it needed, and using products from Montestary of Herbs, he cured me completely.  Without antibiotics.  He uses many methods including the use of a rife machine which definitely benefited me.  When my children also had lyme, he cured them also and their bloodwork has been clear and we are all symptom free.

Now I know that cancer is a whole different animal.  Unlike lyme, you don't know you have it.  With lyme, I knew I was getting better - my symptoms were and are gone.  I went from unable to walk to running four miles a night now.

This is why I DO believe cancer CAN be cured naturally - just because "they" say it cannot  - "THEY" don't know it all.  "THEY" told me if went on antibiotics, it would wipe out my lyme and "THEY" were wrong.  I was told there is really nothing else they can do for lyme disease.  WRONG and I'm living proof.

I'm not arrogant enough to say "Hey, I got cured naturally from lyme, so I can from cancer too", BUT it has given me enough evidence to say "Now that I've had the surgery and chemo, I sure the heck am going to do everything in MY power to try to keep it at bay."  That has entailed drastic lifestyle and dietary changes and keeping up with seeing my herbalist to keep my immune system in good shape.

I do believe some of those testimonials.  I do - even oncololgists do not undertstand cancer and they will admit that, so HOW on earth can they say there is NO other way to cure it?  Do you know that they have found through autopsies that many people have had cancer sometime in their lives, but their bodies have shut it down?  We all have cancer cells in our body from the time we are born - abnormal cells that the body weeds out.  A natural cure simply enables the body to do that.

Now again, I don't believe it always works, because we don't understand it enough.  But I'm absolutely appalled at the fact that most oncologlists are COMPLETELY and 100 percent ignorant of anything except medicine.  Suppose natural methods - dietary changes, increases in exercise, proper vitamin D supplementation, etc., could prevent 5% of recurrences.  That's 5 more people out of 100 who get to NOT go through it again!  Or who live..... OR suppose it could add 10 years onto the lives of survivors before a distant recurrence?  That's 10 more years to see our kids or grandkids grow up..............

I do agree that many testimonals are suspect, and there are people who prey on the vulnerable and sick, but I do also believe that some of them may be true...........

Anonymous

Thank you so much Melissa for your post and Calamtykel for your precious testimonial.

Anonymous

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thenewme

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. 

thenewme

Melizzard, I understood that your personal "testimonial" was not in favor of the Budwig diet. But then you went on to give a favorable "testimonial" that it DID work for your friends, and that "the protocol" was the only possible thing that could explain their "success."

That's exactly the problem with testimonials - firsthand, secondhand, or whatever. 

It's great that you are doing well and your friends are doing well.  However, whatever you or they did treatment-wise may or may not, in fact, be The Answer.   Just as the treatment choices I made may or may not, in fact, be the complete black and white answer to my current state of health.   

thenewme

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

thats-life-

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?

apple

I really liked your posts Joylieswithin... particularly ""

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

Civility IS a rule of debate... at least an unspoken one. 

.

Anonymous

ThatsLife, the owner and Board of Directors saw fit to provide a forum for alternative treatments to be discussed, but they need to be made aware that some individuals, for some obscure reasons, have taken it upon themselves to police BCO and put up a barrage of insults anytime anyone attempts any form of discussion, purposely creating chaos so as to render such impossible. The old scientific evidence excuse is merely a disruptive tactic exercised with less than noble intentions.



It is a very egoistic trip these individuals are on as they totally obliterate the fact that as a stage 4 and myself a stage 3, we need to be aware of any treatment, supplement, herb, that could help our situation.



I would love to hear

Anonymous

Sorry, damn phone, would love to hear your Indian friend,s secrets, as i am sure many sisters would, but there is no safe place to be found on BCO at the present time

MariannaLaFrance

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....

AnneW

JOY wrote: 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.  

Thank you, Joy. My feelings exactly!

And I would love to sit around your dinner table some night!! I can only imagine the amazing conversations (not shouting matches, where everyone HAS to be right!)

luv_gardening

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. 

luv_gardening

Thenewme, you said "Joylieswithin - I'm truly sorry you seem to think those of us who disagree with any particular post are trying to disturb the peace."  You misunderstood me.  I'm very happy to see debate which is important when peaple's lives are at stake. It's the personal insults and quoting of people like Orac who are abusive towards people that I object to as set out in my post above.

There was a very insulting post towards Luan on the first page which was edited to take out the worst but still calls her childish, with nothing of value to contribute.  I don't see how this will help the alternative minded readers who may be alienated and any influence you might have in their choices would be lost.

Your tone in your reply to Luan was agreeable to start but then deteriorated somewhat.  I've found your posts to be very conciliatory at times and the opposite at other times. I can understand your frustration when people make grossly illogical statements but people can't all be in the higher range of logical abilities.  If people lack that ability to apply logic, has it ever helped them by getting angry or insulting towards them?  I find that when people are upset or offended, their logical abilities suffer, so keeping everything on good terms actually helps them to understand the point you are making.  

Does that make sense?  It's just basic psychology and I suggest that many doctors need to take courses in psychology and counselling before being able to practice.

ETA I see you've deleted your posts while I was writing but I thank you for your contributions which may help us to iron out how we can all better debate these important issues in a friendly and productive way.  I appreciate many of your informative posts.

thats-life-

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...