Alternative Medicine vs. Quackery
I wanted to collect some thoughts for the benefit of non-alternative-minded visitors to our forum.
Some seem to believe we are a bizarre group who place irrational belief in witch-doctor potions and crazy concocted "treatments" in hopes that those things will cure cancer.
I would like to set the record straight.
There is a BIG difference between alternative/complementary medicine, and quackery.
Alternative medicine, in general, is about treating the WHOLE PERSON... working toward whole-person health rather than simply freedom from obvious disease... treating imbalances and root causes rather than treating symptoms... treating with natural means when possible rather than indiscriminantly blasting with synthetic chemicals or other harsh treatments. (Natural foods and herbs are often just as effective if not more so, without all the harsh side effects and dangerous risks of conventional treatments.)
Alternative medicine has a solid evidence-based foundation of years, sometimes centuries, of proven success. (Note that when these alternative treatments do not involve something patentable, it will rarely be funded and studied and published in conventional medical journals.)
Alternative medicine covers a broad scope, but in my mind, the core of it is treating the mind and body with good nutrition, and lifestyle factors such as sleep, sunlight, exercise, and management of stress.
Because our bodies have been mistreated most of our lives (with the junk that's put into processed foods, drugs, and the environment, as well as poor lifestyle habits), often more drastic measures are needed to bring the body back into balance. This is where treatments such as medicinal herbs and other supplements, and other treatments such as detoxification, come in.
Do some of these herbs and treatments sound a little kooky? Sure, and that's why it's important to research them and see what evidence there is that something works. Some of the kooky-sounding stuff is quackery. Some of it saves lives.
I'll close by repeating something I said on another thread recently in regards to thinking of alternative vs. conventional medicine as an "either/or" propostion:
I don't think anyone on the alternative forum would claim that no one should pursue conventional cancer treatment (I myself have been treated with surgery, and several here have had chemo/radiation either currently or in the past).
Sure, there are some unscrupulous "alternative treatment" practitioners who are more interested in making money than in healing people. (It's wise to watch out for practitioners and clinics who cannot point to solid scientific evidence for their approach, who rely only upon a handful of anecdotal "success stories," and who conveniently require thousands of dollars and possibly a lifetime monthly subscription to make sure you get enough snake oil to cure you.) ALWAYS do your homework!!
Other alternative practitioners may be sincere, but they don't take the whole-body-and-mind approach that's CRITICAL to helping one's body heal. I've heard of cancer patients doing ONLY vitamin C IV's or ONLY Laetrile injections etc., thinking that one treatment would heal them. Of course, that's a recipe for disaster. I shudder to think of someone with advanced cancer doing their daily IV of vitamin C, "believing" in it as though it's the thing that will cure them, then going back and eating sugar-filled garbage and living a stress-filled life. (BTW, of course I'm not knocking the value of vitamin C! Just making the point that it MUST be one tiny component of an overall diet-and-lifestyle approach for it to be effective.)
I believe most of us on the alternative forum believe in giving our bodies the best chance for healing, through nutrition, exercise, quality sleep, managing stress and other emotional factors, natural hormone balance, avoiding toxins/carcinogens common in food/drugs/the environment, etc. -- whether conventional treatment is pursued simultaneously or not.
I hope you will stick around the alternative forum and do some reading. You will be surprised to find we do not advocate unproven "quackery," as some mistakenly think. We seek facts and research. When appropriate, we believe in conventional medicine! But we aim to weigh facts ourselves and not blindly accept a "treatment" without doing our own research about it... whether it's recommended by someone in a shop full of crazy-looking herbs or someone in a white coat.
Comments
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BTW - this is just stream-of-consciousness while it's on my mind... everyone please feel free to add your definition of alternative medicine vs. quackery... there are so many knowledgeable and eloquent women here in our little forum!!
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Julia, I have been meaning to post in reply to this ever since you created this thread. Yesterday I posted on another bc site and included 2 links for labs which provide chemo sensitivity testing on the blood, one in Germany and one in Greece, and was admonished for doing so. I was told that my post belonged in the alternative forum. Of course there is no alternative forum. It is just a thread in a support forum., and I had posted these links many months ago in that thread. I was posting to a woman whose chemo did not work. She was not the one who replied, but when I read the reply to what I posted, I actually felt sick to my stomach. These labs are recommended by Life Extension, and I had read about them in the Knockout book by Suzanne Somers. I also know a woman who had the testing by the lab in Greece.
Ever since my daughter was dx with bc, I have read every article pertaining to bc, and treatments available. Lori was never told about chemo sensitivity testing, and it was during the time she was taking chemo that I read of a place in CA which did chemo sensitivity testing on tumors. However, no one ever has this testing, because the majority of the conventional doctors say it is useless, and they cannot wait for the results, and they will use the chemo that all the oncologists use for TNBC. Actually it is the same chemo that they give to women dx with BC+.
My point after writing this is...why do people feel the need to condemn what others are doing? Why must they question each and every statement made, and demand articles/trials/studies to back up what they say? It is up to each person to do their research, and the final decision is theirs and theirs alone. I support everyone no matter what their choice. I don't ask why they are or are not taking conventional/alternative treatments. A woman wrote to me many months ago that anyone choosing alternative treatments after a dx of bc is committing suicide. She then deleted her post after a while.
How can a person dx with bc begin to heal when others continually make her question herself and her decision? Why would a woman want to join a bc site for support which talks only of scientific data? She is usually there for support. She is looking for someone to talk to, on those days when she is feeling down, and her loved ones and others cannot understand what she is going through. She wants to hear what is working for others. Even as a mother of a woman dx with bc, I cannot fully comprehend what my daughter experienced, and is still experiencing, and I never tell anyone that I can. Only you women who have been dx can feel what she felt and at times still feels.
Now that Lori has chosen alternative methods to heal her body, mind and spirit, I choose to come to this bc site, for I cannot speak of what she is doing to heal on the other site. That was where I posted ever since she was dx, and I asked for help to help her. If she was taking conventional medicine, there would not be a problem. Is it the same here on this site other than the Alternative forum? I only read the Triple Negative forum at times and this forum. My daughter knows in her heart that what she is doing is the right thing for her. I know that also.
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Julia, GREAT POST! Thanks for writing/posting this.
My father is an alternative health practitioner, so I've grown up believing in/experiencing the value of alternative medicine. However, I utilize Western/conventional medicine when necessary, and believe in INTEGRATIVE therapies. e.g. After surgery, I was simultaneously taking Percoset and Arnica!
In general, I use alternative medicine to maintain whole-body health and prevent illness, and to manage chronic conditions...and this reduces my need for conventional medicine. But for acute problems, or things like cancer, I'll simultaneously use conventional treatments. When my asthma was daily and severe for 4 months straight, and my naturopath's treatments were ineffective, I went to a Western doc and got the heavy-duty asthma drugs. I took those asthma drugs at half dose and for half the time prescribed, and my acute asthma went away...and I've been successfully managing it with alternative medicine ever since - herbal infusions, yoga, dust-mite-reduction in my environment, etc!In terms of BC...I recently had surgery, and am also receiving treatment from a naturopath. I am now putting a lot of time and energy into gathering as much information as I can about the other treatments available to me - radiation, chemo, hormone therapy, and alternative treatments. I don't know yet what I will choose to do and not do, but regardless of which specific cancer treatments I choose, I will continue to eating healthy foods, sleeping/resting well, exercising to the fullest extent that I safely can, and practicing a variety of relaxation/stress-reduction techniques. To some people, this is "alternative medicine," but to me it just common sense! The importance of healthy food, rest, exercise, and joy is so basic!
My biggest frustration lately, being immersed in the world of alternative medicine, are people who believe that there is one "magic cure" for something as complicated as cancer - such as those people you mentioned who do Vit C only. I think it is ridiculous to suggest that any one thing caused or can cure cancer - it's not that simple. I personally feel that it is important for me to A) learn as much about the cancer that is/was inside of my body as possible, from as many sources as possible, and
use that information to develop a plan, along with both conventional doctors and alternative practitioners, to get the cancer out of me as completely, safely, quickly, and painlessly as possible, with both conventional and alternative methods. This is quite complicated and honestly, I'm frequently completely overwhelmed by trying to do this - there is so much information, so many questions, so many options, so many unknowns! But I am trying! I think that it would be foolish to unquestioningly follow the standard surgery/chemo/rads route without attempting to make any nutritional or lifestyle changes. I think it would be equally foolish to attempt to shrink a cancerous tumor merely by visualizing white light and taking herbal supplements. A holistic approach just makes SENSE. -
Julia, thank you for starting this thread.
You made a couple of interesting points in your opening post. As you might know, I'm a scientist by training (biomedical sciences). I always look for evidence to support claims being made about this or that treatment. So, this statement of yours both encouraged and disappointed me:
"Alternative medicine has a solid evidence-based foundation of years, sometimes centuries, of proven success. (Note that when these alternative treatments do not involve something patentable, it will rarely be funded and studied and published in conventional medical journals.)"
The problem is, if there really is a "solid, evidence-based foundation" to support alternative medical treatments, then that evidence should be available for other clinical researchers to study and challenge. The most important characteristic of good science is reproducibility of the observations. It isn't enough for one person to claim that he or she observed a particular result with treatment "X". That result has to occur frequently enough when testing "X" so that the possibility of a chance (random) relationship can be rejected. And, that result has to occur even when other people test "X" under similar conditions but in their own clinics or laboratories. The only way to eliminate the possibility of a chance relationship is to conduct well-designed "experiments" (clinical trials) testing "X" against some control treatment. And, the only way other researchers can see if the findings are reproducible is if the testing and results are described in detail in a widely available, credible source, like a reputable medical journal. BTW, it's a mistake to assume that only patentable ideas receive research funding, and only patentable discoveries can be published in medical journals. Take a look at an issue of Lancet, New England Journal of Medicine, JAMA, or Journal of Clinical Oncology, if you don't believe what I'm saying.
Toward the end of your post, you said this: "You will be surprised to find we do not advocate unproven "quackery," as some mistakenly think. We seek facts and research."
I'm afraid there might be a difference of opinion here, on the definition of "research". When I look for published articles and presentations of studies on a particular treatment, I am not doing research. I am looking for research that others have done to see whether or not the treatment works. The "research" will consist of well-designed, controlled, clinical trials and experiments that tested the effectiveness of the treatment under specific conditions. After "peer review" to establish its legitimacy, the results of the research will be published in medical journals or reported at scientific meetings.
All I am doing is reading the articles. I am not doing "research", except maybe in the broadest sense of the word. I would never say I was "researching" a treatment if all I was doing was locating and reading journal articles.
So, although I am pleased to hear you say the proponents of alternative therapies "seek facts and research," I'm skeptical whether we are talking about the same thing. The reason I'm skeptical is because of statements like this one, which Nan made in her recent post:
"Why do people feel the need to condemn what others are doing? Why must they question each and every statement made, and demand articles/trials/studies to back up what they say? It is up to each person to do their research, and the final decision is theirs and theirs alone."
I certainly agree that each person's treatment decisions are ultimately hers, and hers alone. But, when someone says each of us has to do our own "research", and then complains when people ask for evidence in the form of published articles, clinical trials, or controlled studies, I worry that quackery is being defended. To me, "quackey" is medical treatment that is advocated despite a lack of published scientific evidence of its effectiveness.
Although people sometimes show up here on the "Alternative Therapy" forum demanding published evidence of effectiveness, the main problem arises (IMHO) when someone goes to a "conventional therapy" forum, like "Surgery", or "Chemotherapy", or "Hormonal Therapy", and recommends an alternative treatment as a substitute for a conventional therapy. I don't think it's surprising or unreasonable when people on those forums ask to see the "facts and research" documenting the effectiveness of the alternative treatment.
So, for me, the bottom line is evidence. If there is adequate, scientifically sound evidence published in a legitimate source, I'm interested. If someone tells me the "evidence" is in a book somebody wrote (and I'll resist naming authors' names) or in an article I can find on someone's personal op-ed website, I'm skeptical. If someone says I shouldn't even be asking to see any evidence, I'm gone. YMMV.
otter
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One of the reasons there are not clinical trials for alternatives is that they are not not taken seriously and often ignored. I found an article a while back from an oncologist who talked about the fact that he had tried to present his paper at an oncology conference, but it was never accepted. He said most of the accepted papers were all about drug therapies, and that less that 5% of the accepted studies that were considered alternative, were even allowed to be published. The problem is not that there is not proof that many alternatives work. The problem is that it is being censored. And as for the drug studies themselves, until they compare these drugs in a triple blind, with an alternative as the third aspect of the trial, I will never be convinced that these trials are as factual as the are proported to be.
I will admit that I do not have a scientific mind, but sometimes logic can get in the way of good old common sense. It use to be that a doctor could make an educated guess based on his knowlege and experience. Now they cannot assume anything. They have to run all kinds of expensive and often dangerous tests to support their assumptions so they do not get sued. It is so ridiculous.
And there are just some instances when science cannot explain things. There are people who have been cured of cancer in all kinds of unorthodox ways. Just because they were not part of some trial, should not mean that their recovery should not be considered successful and that others might want to try what they did. There is no single answer for anyone. That is why everyone should be encouraged to read as much as they can and learn about their own cancer. I think I was never so furious with my doctors than when they told me to stop reading so much, because I had so many questions that doubted my need for what they were proposing. So I went along with it all. But when they started telling me that chemo was a possiblity if my onc score was high, I said the hell with anymore tests. I had a stage one tumor with no nodes and wide margins. I was not about to do chemo based on another test. The fact is, everyone has cancerous cells floating around and they only way to keep them form forming cancers is to get our systems as healthy and in balance as we possibly can. Our bodies are amazing machines with an incredible ability to heal. Sometimes we need help from modern medicine, but often we can do a lot more than just take a pill.
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Otter, thanks for the clarification about research. I am one of those mrs. malaprops who has spent hours upon hours 'researching' others research. I look at journals as well to define if something is worthy or just opinion.
..although, it does beg the question of how an alternative treatment x healed someone with stage four cancer, those are wonderful stories, sometimes its too late and sometimes its not. sometimes the entire thing is out of our hands - but we have to fight. I researched vitamin c and spoke with the nurse to dr drisko who received the grant to go ahead and run a clinical study on humans and vitamin c drips. Only issue, is that the c was used w/ chemo vs chemo alone. This was finalized in 07 yet the numbers are not out yet.. ..so I need to decide if Im to do the C or not to do the C. I will because I will fight to live, I want kids, I want to see my neices grow up, there is so much more my new husband and I need to do in our lives. I did chemo but who knows if it worked for me. I want to point out something else in terms of science and cancer. As long as there is vascular uptake in and around any rogue cancer cells, that is how the cancer spreads so you have to kill the cancer cells to obliteration to stop them from spreading.
There is a lot of talk of killing the stem cells of the cancer cells - this is riveting news, someone please attach some research papers to this. It is one of those things that sounds really smart but is it real? I hope so. But in the end lets face is girls, cancer is a huge money maker so choose who you trust wisely - this goes for pharma and for alternative. Something that I did learn while looking into the vitamin c therapy was that if I happened to live in kentucky in 07, I could have done this for free. Perhaps there are clincial trials in the midst for all of these very interesting alternative options.
Lastly, if its mistletoe, or vitamin c or avastin or hell, even the devilish pill tamoxifen that will stop this in its tracks, kills the beast then its ammo IMO and worth pursuing. Just my thoughts. ..but ALWAYS be careful of mixing drugs and supplements. For instance, tamoxifen may cause blood clots and vitamin K coagulates the blood, use your brains and not your emotions when it comes to battling this disease, trust yourself first and study everything that you are putting into your body.
xo
*edited to add info for finding clinical trials with alternative treatments
Trial Lead Organizations
National Center for Complementary and Alternative Medicine
Patrick Mansky, MD, Principal investigator
Email: manskyp@mail.nih.gov Ph: 301-435-4845 or 888-644-6226
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PS73 wrote:
Otter, thanks for the clarification about research. I am one of those mrs. malaprops who has spent hours upon hours 'researching' others research. I look at journals as well to define if something is worthy or just opinion.
Otter...it was my choice of words when writing about my daughter Lori, and she has done exactly what PS73 has done. She nor I would ever attempt to persuade a person that they are making the wrong choices. Lori is on BHRT, vitamins, other supplements, has eliminated sugar and all processed foods from her diet, eats only organic foods, grass fed beef, has been and is still exercising daily, walking, hiking, biking, meditates, and practices yoga.This is not "quackery" by any means, but instead is what Lori is doing to recover from all the surgery, chemo and rads.
She is not telling others that this is what they must do, nor am I, but if I posted this on another site, they would tell me that it belongs in the alternative forum? Both Lori and I feel that conventional medicine is very important. But to question what she is doing and demand articles which prove what she is doing will help "HER" to recover, is ludicrous.
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Nan, you misunderstood what I meant. Or, maybe I misunderstood what you meant. I never intended to suggest that taking vitamins, eliminating processed foods, eating organic food, exercising daily, ..." was quackery. (Note that I did leave some stuff off the list.) And, I'm sorry if it sounded like I expected you, or anyone else, to justify, via reseach papers and clinical studies, the choices you made for your own treatment or what your daughter had chosen for hers.
I was referring to a statement you made in an earlier post on this thread, but I might have missed the context. Julia started this thread to explain to the skeptics that there is a difference between "alternative/complementary medicine" and "quackery". I agree with her assertion (generally). Actually, I think there's a substantial difference between "alternative medicine" and "complementary medicine," but that's not what the thread is about.
Maybe it would clarify things if I amend my personal definition of "quackery". To me, "quackery" is when someone tries to convince others to adopt a particular therapy for which there is no scientific evidence of effectiveness.
Anyway, I have no right to object when someone chooses an alternative approach for her own cancer treatment. It's none of my business, frankly. If someone wants to talk about her strategy, be it the Budwig diet, flax oil, or dichloroacetate, and share tips and suggestions among others who have similar interests, I figure "go for it!". The same thing happens on the conventional forums when someone finds a solution to a problem or discovers a coping strategy that really works.
So, why do people go into attack mode when someone tries to tell others about alternative treatments? Well, I think it's mainly because some of those pro-alternatives posts sound so darn much like prosletizing (http://www.merriam-webster.com/dictionary/Proselytize). That's no big deal when the posts are made to the "Alternative Therapy" forum, where they're read by people with similar interests. But, sometimes a pro-alternatives post will end up on a "conventional" treatment forum, like "Chemotherapy". And, occasionally, the favorable description of the alternative treatment is accompanied by criticism of the conventional treatment it would replace. Maybe it's just me, but that sounds even more like the proponent of the alternative therapy is trying to convert "non-believers" to her way of thinking. And that really p*sses some people off.
It's true that sometimes people wander over to this "Alternatives" forum and demand to see evidence to support the approaches being discussed here. That might seem rude, but it's really not much different from someone on the Chemotherapy forum asking if there's a journal article or clinical trial showing that Taxotere/Cytoxan is better than Adriamycin/Cytoxan, or someone asking if there is published evidence (as opposed to anecdotes) showing that Vitamin D can reduce the aches and pains associated with Arimidex. It happens all the time.
For example, I've noticed posts in this forum that mention "natural" aromatase inhibitors that might work as well as Arimidex, Femara, etc. I've been tempted to ask whether there is evidence from clinical trials or well-designed experiments showing that the "natural" AI's really work. I really would like to know, because I'm on an AI and I am curious about possible alternatives. But, I haven't asked that question. I know it would offend some people who don't like being made to feel as if their personal treatment decisions are being challenged.
Really, we shouldn't squabble the way we do. We are all looking for the best solution for ourselves and for the people we care about.
otter
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Otter wrote: I've been tempted to ask whether there is evidence from clinical trials or well-designed experiments showing that the "natural" AI's really work. I really would like to know, because I'm on an AI and I am curious about possible alternatives. But, I haven't asked that question. I know it would offend some people who don't like being made to feel as if their personal treatment decisions are being challenged.
Personally, I don't think there is anything wrong in asking that question -- after all, it's the same as the questions I asked my onc about the conventional tx she recommended to me. As Otter says, we're all looking for the solutions that are right for us (or at least, that we hope are right for us). As I read recently -- "the plural of anecdote is not data" -- and I feel I cannot make a wise decision without sufficient data to back it up. Of course, after a career working in healthcare teaching and research institutions, I may be a bit biased.....
Linda
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Otter, I may not be able to come up with a clinical trial that shows that alternatives to AI's work, but I have my own hormone tests as proof. Mine were lowered tremendously by incorporating many "alternatives" such as weight loss, exercise, and supplements. But since trials generally involve only one thing at a time, there will never be a trial that will meet your criteria. For me, the proof is in my own tests. My problem with the direction my onc wanted to go, just give me Arimidex and "monitor" me without ever checking my hormone levels to begin with just seemed totally wrong. What proof do they have then, that their drugs work? I do not mind being my own guinea pig. Especially when the method I have chosen have no side effects, except for the fact that I feel fantastic. The great thing about most alternatives is that the side effects are usually positive. I do not take much stock in those trials. I prefer to monitor my own blood and urine levels. That is all the proof I need.
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The lack of scientific rigor can lead to all sorts of trouble. For example, large numbers of women were given HRT for decades and no one had studied the effects of this widespread practice. Everyone just assumed -- la la la -- it makes sense. So when they finally studied it they found it caused cancer and did not, as was believed, prevent heart disease. And for many, many years people who had heart attacks were told to stay in bed for two weeks afterwards when that is the opposite of what they need. When they finally studied this (I believe in the 70s?) they realized the best thing for heart attack patients was to get up and exercise.
What is good for you isn't always obvious. Thats why I place my faith in clinical trials, published and replicated research, in other words mainstream medicine.
But I see it as two concentric circles. The inner circle is the treatments I have taken to keep me alive -- surgery, chemo, radiation, tamoxifen. Then I see a larger circle of things I do for my general health and because they make me feel good -- running, following a vegetarian diet, watching my weight and eating low fat, drinking only in modest amounts. I don't think of any of this as alternative medicine, and I would guess none of you do as well, but I do think of them as taking care of myself. This is general care, I do not believe any of these activities will prevent a recurrence in themselves.
I can imagine others will fill both their inner and outer circles differently.
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I haven't read all the replies yet but this caught my eye:
It's true that sometimes people wander over to this "Alternatives" forum and demand to see evidence to support the approaches being discussed here. That might seem rude,
That's not rude at all. I and many others here want to see evidence to support an approach I'm considering trying. It's only rude when they come to this forum specifically to be insulting, sarcastic, arrogant, cruel (as in telling people they will die if they don't do such-and-such) and clueless enough to think their doctor knows 100% of all medical knowledge in the world.
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But studies showed Arimidex had no survival value when used as an adjuvant therapy.
So if you're looking for an alternative to Arimidex I'm not sure what the point is. It seems that this alternative to Arimidex doesn't have to reach a very high bar.
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You make a good point--about rigorous evidence. But, HRT was given "rigorous" study and prescribed to treat all middle age maladies to their extreme detriment. The problem wasn't the rigorous study, or lack of it; it was who was doing it. The makers of premarin, progestins and prempro managed to manipulate the raw data. That is why huge awards are being given to plaintiffs in lawsuits. When the WHI results came in regarding HRT, it was clear that the public was sold a bill of goods by trials that weren't, well, valid at all. What is the answer? I am not sure. We need evidence and study, but I take a good look at the data and how it is compiled and who sponsored it.
Oh, just an aside, but now the horses that Wyeth used and overbred for the production of premarin are being sold for slaughter; they always sold the foals for slaughter, but now it is a wholesale dump of these poor creatures.
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[Post deleted. I didn't come here for an argument.]
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Otter, I'm confused as why you think we should avoid debate on this forum or that I should pussyfoot around to avoid the inconvenient truths. Why would I care what the skeptics think? I've done extensive research and I have peace of mind.
BTW, I wasn't referring to studies comparing Arimidex with Tamox. Didn't you see the Eric Winer thread? And criticizing those you think used the wrong Tamox studies misses the point that the absolute survival is still 2%.
I wish you the best taking Arimidex. Bye!
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I don't know why the conventional people keep coming over here to justify their choices. Do we go to their forums and justify ours?
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Julia or any one else. Thank you for starting this thread. I am a physical therapist that prior to DCIS avoided any kind of medicine if at all possible so the thought of radiation get me sick to my stomach. That being said with my science back round and a critical thinker if I have to i will to save my life. But there is so much question out there about DCIS and what percent turns into invasive cancer and what does not. I have reviewed Dr. McDougall's information on Vegan diet and decreasing your risk of breast cancer by changing your diet. Also, getting enough vit d through sunlight, taking in enough antioxidants in your food and exercising 4 hours a week minimum. Is there any research to support any of this information. Can anyone direct me to a Breast cancer physician that has some information regarding diet, normal estrogen levels, blood tests, etc. Thanks for directing me in any way you can. Laura
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Lauralew, there is a well-known doc right in your neighborhood. He gives free monthly talks which my friend has attended. Go there and ask him what his approach is for somebody like you. I don't know how familiar he is with the cutting edge research we review here. But, hey, the price is right.
http://www.preventionandhealing.com/pah-about_yu.htm
Let us know how it turns out, okay?
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Anom, love this quote from that Doc's website:
"Think differently! We must correct the underlying problems that cause our illnesses. Only by doing so, will our bodies correct themselves and return to optimal health."
lauralew, please check out some of our other discussions on the alternatives forums for lots of links to all kinds of studies. Also, I am planning a prevention convention in the Chicago area in March. I have a lot of great doctors who are going to speak about nutrition, supplements, hormone balance, iodine, chinese medicine, etc etc. Get a couple of your friends togehter for a girls weekend. Let me know if you want more info.
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Laura ~ If you haven't already, you might want to read Anti-Cancer, A New Way Of Llife, by David Servan-Schreiber, MD, PhD. He's a 2x cancer survivor who basically saved his own life with an integrative approach that UCLA, where he was a guest speaker last week, terms "science-based."
As far as finding a breast cancer physician who is open to the importance of diet, exercise, Vitamin D, hormone balancing, etc., you might try contacting the Society for Integrative Oncology for a list of member oncologists in your area:
http://www.integrativeonc.org/
You may also need to use more than one doctor. My onc isn't interested in hormone levels, Vitamin D or thyroid testing, but my primary doctor is. So I have her order those tests. However, while she's open to and actually recommends supplements like Green Tea Extract and Tumeric, she usually feels that my blood test results are fine if they're within the "normal" range, so I get input from a naturopathic doctor on diet and supplements to improve those to my own comfort level, which is based on both indepth reading and the shared knowledge I've found here re. the importance of higher/lower levels vis-a-vis bc prevention.
I personally believe that integrative medicine is and will be the wave of the future, but for the time being, I think most of us who have chosen not to go a 100% traditional route, especially after we've had some traditional treatment but realized we needed to do more, find we need to look to more than one expert for guidance. Deanna
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MsBliss-the thought of raising horses for research just made me sick. Thanks for letting us know. The saddest thing about the horse crap that they use to give us for HRT is that it has given all hormone therapy a bad rap, including BHRT, which is different molecularly. Many doctors still do not know they are different and steer women away from finding balance with BHRT.
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Molly, the alternative folks actually do go to other forums to convince women to bypass mainstream medicine. And this thread was specifically directed at those of us who have chosen mainstream medicine.
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I think some women go to other forums to give opinions. Just like if you went to a surgery forum and gave an option on DIEP or Nipple Sparing. Its opinion and not written on scrolls. It just happens to get heated for some reason - which is more reason to hang out in the alt forum for breathing techniques. It reminds me of the skiers vs the boarders. Someone on the conventional forum did get nasty and say something like excuse me but Im not going to rub broccoli on my boobs and expect to get better. For some reason that stands out in my mind because it couldn't' have been more off but people tend to get upset and it goes with the territory of the disease. ...plus, we should rethink our battles with women with 100% estrogen overload knowing it isn't always going to be nicey nice and rational. ..unless you have chocolate. Chocolate is like the secret password.
I think you will find that many alt girls stay around this neighborhood these days because of the reaction they get in other areas.
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I know a lot of you think I come here to argue or whatever, but that's not it at all. This is such an interesting thread. I totally agree with Otter, and as usual she expresses herself far better than I. Evidence is the bottom line.
From Dictionary.com:
1. a fraudulent or ignorant pretender to medical skill.
2. a person who pretends, professionally or publicly, to skill, knowledge, or qualifications he or she does not possess; a charlatan.
-adjective
3. being a quack: a quack psychologist who complicates everyone's problems.
4. presented falsely as having curative powers: quack medicine.
5. of, pertaining to, or befitting a quack or quackery: quack methods.
-verb (used with object)
6. to treat in the manner of a quack.
7. to advertise or sell with fraudulent claims.I come to this forum, personally, because I'm very high risk for recurrence and I've done everything I can from a conventional medicine standpoint. I'm triple negative, so there are no ongoing treatments/medicines to help me. I'm a firm believer in complementary medicine. I absolutely believe that diet, nutrition, exercise, and stress reduction are essential for health. I believe that yoga, acupuncture, massage, meditation, etc help in the overall quest for health. There is valid, reviewed, clinical research to prove the benefits of these things. I'm always looking for more ways to improve my health and decrease my chances of recurrence. Show me solid evidence, and I'd run out right now and take out a second mortgage to pay for "alternative" treatment, but I just don't see a lot of that critical thinking around here! The OP claims to be all about facts and research, but I agree with Otter - apparently facts are in the eye of the beholder.
I hear people saying that conventional doctors have no training in prevention and lifestyle issues, and that conventional doctors deny any health or prevention benefits from these things. Sorry, but I don't believe that at all. I find it hard to believe that even the most hard-core "conventional" oncologist would say that nutrition and exercise have NO effect on health.
For me personally, the "Quack" red flags shoot up whenever someone cites their sources as Ralph Moss, LifeExtension Foundation, Mike Adams, etc. I've started several threads hoping to discuss why those sources are considered reliable, but I've not gotten any responses that show any credibility at all. I'm not bashing anything or trying to justify my choices or force anyone to justify theirs. I see a lot of verifiably BAD information posted here, and I think it's irresponsible to let it stand uncontested, especially for newcomers desperate for accurate information.
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Ralph Moss is a phD who blew the whistle on some very wrong things going on at Sloan. He has been ostracized by the medical community since. My Onc does not advocate alternative medicine but does not forbid it either. He knows everything Im doing. My MD was a licenced obgyn for 25 years and just happened to stretch his limbs into holistic medicine forthe past ten years and I believe he is brilliant. These are medical professionals. We all know the issue with alternative medicine - the proof is in the pudding and unfortunately we don't have many clinical trials to support alternative medical theory. Unless a natural ingredient gets altered, trademarked, validated, paneled - most will not use it. Look at the common yew plant - used for centuries by the indians - well now it's taxol. There are lots of promosing natural ingredients yet pharma won't touch them because they cant trademark them and therefore cant clinical test them. ..I mean its nothing new, we all know the sob story of natural alternative medicine but it's still promosing and more than a leap of faith when the benefits are seen - maybe not in 'n' size but in people we know and care for and speak to daily.
The alternative medical industry is a small industry and within it, some very respected individuals who use eachothers theory to help solve issues, not mask symptoms. Yes, there are quacks. my terminology of a quack is; an uneducated con artist who gains value by others personal compromise. I think the term originally came out referring to psychologists - so are all psychologists quacks - nope, just the ones who are uneducated and treating inviduals for a profit.
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Maybe examples would help. Just off the top of my head, some of the things I've read recently that raise my "Quack" flag: {rough quotes, as I remember them}
1. "...baking soda is alkaline, which neutralizes acid, so it must be healthy." Ummm, so is ammonia, but it sure isn't healthy to drink or inject yourself with!
2. "...oil pulling...." Seriously?? Swishing your mouth with oil does anything to prevent/cure anything?
3. "...you need to be taking XXX milligrams of such-and-such supplement." Yikes! That really, really makes me uncomfortable! None of us are doctors, as far as I know, and should NEVER presume to practice medicine like this - even if you call them "supplements" instead of medicine. A trained professional would never presume to prescribe treatment to a patient without seeing them, knowing their medical history, other medical conditions, lab results, etc. How would anyone on this forum know what dosage of anything I should be taking??? How do you know if I weigh 95 pounds or 300 - and wouldn't the dosage vary based on that?
4. "...you need to get your levels of such-and-such up to xxx..." Same thing - how would anyone on this forum know what's healthy for me personally?? More of a good thing is not always beneficial, and adverse reactions can happen when someone haphazardly starts overdosing on even "good" supplements.
5. "...BHRT is completely safe and natural and you should be taking it!" Where is the research that shows bioidentical is safer or different from synthetic? And how could it possibly be a good idea to rely on strangers on a message board for advice on taking something as powerful as hormones??
6. "...researchers never do studies on "alternative" treatments because they can't make money on vitamin D, for example." BS - you can go to www.clinicaltrials.gov at any time and find many studies, even sponsored by the big-name pharmaceutical companies.
7. "...laetrile is a great idea to be taking...DIM is a good thing to take...iodine is great..." Facts, please?
8. "...chelation and detox help to prevent/cure...." What, exactly, do chelation and detoxification help prevent or cure? Which studies/research show the benefit?
9. ".... well, my hormone levels prove that such-and-such works." Huh? How does one person's labwork, symptoms or lack thereof, or feelings prove that any particular therapy "works?"
10. "... my doctor or naturopath (or friend, neighbor, daughter, etc) says..." Once again, medical treatment should be based on individual circumstances, not based on someone else's.
11. "...thermograms are a great alternative to mammograms." Facts, please?
I think it's great to make suggestions, and this site is awesome for discussions, but for me these kinds of statements really cross the line. I love to see facts and research given for all options. Armed with FACTS, we can each make our decisions.
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Hi PS73 - I'm not sure I understand your position. You mention the yew tree and Taxol. It's a perfect example of a natural/alternative option that was found to have potential, and then studied and eventually became mainstream, conventional therapy.
Yes, I know about Ralph Moss' whistle-blowing story, but the advice and products he promotes still lead me to believe he's a quack.
Based on a quick search, I don't believe the alternative industry is a small one:
World Nutraceutical Ingredients
By: Freedonia Group Inc
Global demand to advance 6.2% annually through 2013 Demand for nutraceutical ingredients worldwide is projected to advance 6.2 percent annually to $21.8 billion in 2013, serving a $236 billion global nutritional product industry. -
I am also TRIPLE NEGATIVE and have done alot of chemo. I am currently doing radiation. I am trying to heal my body. I FEEL SO TIRED AND NOTHING LIKE I DID PRIOR TO THIS. I have purchased this supplement and that supplement and am now juicing....eating right....and NEED to do better with the exercising. I am just SOOOO tired....Trying to get through radiation.
Well I am going BROKE here....Medical bills piling up...Now shopping at WHOLE FOOD STORES and have added supplements.....and I do get tired of hearing...HEY YOU NEED THIS OR YOU NEED THAT....Here is the thing....WE R ALL DIFFERENT, INCLUDING OUR CANCERS.
I was told you will lose ALL YOUR HAIR DURING CHEMO.....Well it did NOT all fall out. I did have SOME LEFT....Had leg hair, eyebrows, and eyelashes....
Was told when hair really started growing back then it will be dark....WELL IT IS COMING IN REALLY BLONDE.....I wanted hormone therapy....because again.....VERY WIERD but I am PR+ well pathology reads BORDERLINE......It states 3%
Oncologist said no to hormone therapy because she is treating it as triple negative.....I am still looking for women with THIS common ground....
I was put in CHEMOPAUSE.....was told period MAY come back....but may be a while and sparatic....Well completed chemo on Nov. 16th.....and boom two weeks later here comes the PERIOD....IN A BIG HEAVY WAY....
I have seen a Hollistic Doctor....I do have my Conventional Doctors....and why....well.......
19 year old son (first year of college)
16 year old daughter (looking for the first car)
8 year old son....who is just trying to figure this all out in his little head (whom is going to see a child therapist at a childs anxiety and depression center) Due to the inability and FEAR of MOMMA just not being MOMMA like she use too. Sleeping habits are horrible for him. Also has had panick attacks.....
With that being said........I do both because guess what.....SO FAR I CANT GET ANY STRAIGHT ANSWERS.....I just want to go to the Doctor and them tell me WHY it happened and WHAT to do to fix it.....Well I dont know about you ladies but what I get from my ONCOLOGIST is.....We just DONT KNOW.....
I dont think anyone should judge any of us...WE DO WHAT WE CAN DO TO DEAL.....For me the supplements and the herbs and the juicing......and of course RESEARCH AFTER RESEARCH makes me feel like I AM DOING SOMETHING.....I dont get the little pills for the thing they call HORMONE THERAPY......
I guess if the next thing that comes out is......GO OUT AND EAT THE DIRT IN YOUR LAWN TO CURE THIS......I will probably be hanging out in the lawn.....EATING....and why........
BECAUSE OF THE THREE PEOPLE I MENTIONED ABOVE WHOM I CARRIED UNDER MY HEART FOR NINE MONTHS......
With tears in my eyes I CRY PLEASSSSSE HELP US AND GIVE US ANSWERS......
and THANK YOU FOR NOT MAKING ME FEEL SO ALONE IN THIS STORM.....
Sincerely,
A 36 year old WITH NO FAMILY HISTORY....MOM OF THREE WHO IS A TRIPLE NEGATIVE BREAST CANCER SURVIVOR...oh yeah who was WAITING for 40 to get that first mammogram....because I am NOT what they consider HIGH RISK.....
AGAIN......WE JUST NEED SOME REAL ANSWERS
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The new me, the yew tree is a perfect example of a natural ingredient which was changed, patented, trialed and is now mainstream. http://www.patentstorm.us/patents/5445809/claims.html here is the patent of how they changed this ingredient. Otherwise, how widespread would it be - just wondering?
Vitamin c - ascorbic acid should not be changed, a study was conducted on vitamin c drips where the ascorbic acid was changed and had no benefit if not harmful. If someone else could chime in on the changed version I would appreciate it since my foobies hurt to type. ..even though I know I started this argument.
In many cases, the purest form of the the ingredient is the strongest form. My point is if you keep it pure, it's not patentable (you need to change it in order to do so). I came from the food industry so I severly know patents and trademarks. Look at stevia for instance. You cant find it as stevia, its reb-a or someother name. Eryithrytol, same thing. To get around this, one could standardize. Im off subject.
I am very curious about iscador. This is a toxic ingredient and therefore needs to be changed, I would not be surprised if this comes out as a mainstream treatment. here is one patent on this, more research is needed... http://www.patentstorm.us/patents/5565200/claims.html
I agree about some very quacky things that go on, trust me, Ive been to two bad ones out of three doctors and that gives me a 67% failure rate at finding a proper holistic doctor. The sample size of 'good' doctors is a small industry. IMO. ..what is the failure rate of conventional mds- look at the malpractice suits to answer the question without spending hours on the AMA census.
Also, I think you are misinformed about individuals doing there own self medicating. I think if you look closely, we all compare notes to what we are getting - but obv this does happen. ..not just in this forum.
Look at vitamin D - some oncs don't even test this. Thankfully mine is great but what now that Im done? My GP told me not to worry about my low level of 13 back in February 08. D is a widespread scare per the surgeon general and on everybodies minds especially since children are of concern. You will notice - what I noticed that many clincial trials do indeed add a vitamin to a chemical to see if it helps but its never used alone - rarely - as we know never is an absolute in chemistry so forgive me if i mispeak.
So I don't know enough about iodine to comment. There are lots of ladies on this who could add to this comment and lots of studies on it too. ..and Im not doing DIM because of the high vitamin K load and my tendency to clot so again cant speak to it but I know lots of studies were done on it.
I want to say though, so what if vitamin c infusions are a hype - so I feel great and am out $1200, theres a chance that it works - my life is worth more than that. ...so what if olive leaf extract is a hype - so Im out $50 and my gut is less yeasty and hey, my cholesterol is lowered. These are mutually beneficial and treat the whole body and therefore beneficial. ...and imo not bad side effects. Ive never told anybody to take what Im taking and as a matter of fact, I have just started supplementing because I wanted to research every little detail about it to make sure my body could handle it. I am not the only one like this.
I don't think anybody on the alt forum would say self regulate, it gets scary when you are first dx and you grab at anything to survive, I saw it with my uncle as he progressed to stage 4 cancer - we all have stories.
Oh and the chelation thing, painful I hear but works if you have high mineral load and or toxic load like mercury. Seriously, look up alzheimers, people are chelating. http://www.ncbi.nlm.nih.gov/pubmed/16051470 EDTA is a chelating agent used in beverages so the minerals in the water don't change the products color to pink. Its food grade and its probably in your cabinet, so techincally you are chelating.
Please attach why you think Moss is a quack.
Lastly, I am not here to argue but i do note an argumentative tone to your response. I know it is frustrating trying to make amends with this disease and you will do what you will and I wish you the purest and warmest regard to your health. I am truly sorry that you have TNC and conventional medicine is limited to you. Maybe you hae picked up a few things on the alt forum that you could add to your arsenal even though you are not a follower of alternative medicine. ... but at one point in my cancer career Id like to get people off of the alternative vs conventional and Id like to think there is a place for both within treatment options.
Sorry for typing so damn slow!!!
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