Respectful Insolence

(NOTE ADDED 12/7/2010: Kim Tinkham has died of what was almost certainly metastatic breast cancer.)

Three days ago, I decided to take a look at the scientific literature regarding whether any “alternative” therapies do any good for breast cancer. Not surprisingly, I found no evidence that any such therapy did, with the possible exception of melatonin, which there is no reason to label “alternative,” given that it was discovered through science and is being tested using science. At the same time, I’ve been keeping an eye on the usual suspects pushing various forms of woo for breast cancer, mainly because I’m always on the lookout for testimonials to analyze.

A little more than a year ago, I analyzed one such breast cancer testimonial by a woman named Kim Tinkham. Ms. Tinkham is a woman in her early fifties who was most famous for having been on The Oprah Winfrey Show in March 2007 having claimed to have beaten breast cancer using only “alternative” methods while . Of course, I noted that, as of January 2008, Ms. Tinkham had said:

She can still feel the tumor just underneath the surface of her skin, where it will probably remain for a while.

But she knows it’s harmless. Now, it’s simply her badge of honor – the reminder that she, Kim Tinkham, defeated cancer without any surgery, invasive procedures, radiation or chemotherapy.

At the time, apparently her definition of being “cancer free” meant that she had undergone some blood test or other ordered by a particularly dubious “alternative” practitioner named Robert O. Young. We’ve met Young before on this blog multiple times. In essence, he believes that cancer and in essence all disease is caused by acid, how viruses are “molecular acids” and sepsis is supposedly not caused by bacteria, and that the cure for all disease is alkalinization. In other words, Young is a Woomeister Supreme, slinging stuff that shouldn’t sound plausible to anyone who’s taken high school biology. Unfortunately, Ms. Tinkham believes in him totally, which led her to be able to delude herself into believing her cancer was gone, even though the mass was still obviously palpable within her breast.

The other day, Young decided to give us an update on Ms. Tinkham.

It turns out that Tinkham is still alive. In fact, she is writing a book that she is calling Cancer Angel: The Explanation of What Cancer Is, Its Prevention and Cure:

Kim Tinkham was diagnosed with stage three breast cancer in February 2007, just two days before her fiftieth birthday. Rather than go the conventional route of mastectomy followed by chemo and/or radiation she chose to seek out an alternative way to heal her body. Her choice to search for an alternative coupled with a late night email landed her as a guest on a very well known female afternoon talk show host in March of 2007, where she stood her ground for her right to choose and shared with the audience that ‘you cannot make a decision based on fear’.

With hundreds of emails from people around the world who watched the show segment applauding her decision and spurring her on she spent the next four months seeking out answers from doctors and practitioners around the world. With her self imposed deadline of October fast approaching and no answer to the question “what causes cancer?” she finally found the research of Dr. Robert O. Young, a microbiologist in California. After communicating with Dr. Young via phone and email she made the decision to follow his protocol and three months later was pronounced cancer free.

Except that we know from her own words that she was not cancer free three months after she discovered Young. She could still feel the lump, and there was no evidence that it was even shrinking. Instead, she persuaded–read: deluded–herself into believing that it could somehow no longer harm her. Let’s take a look at the update according to Dr. Young:

A year prior to my diagnosis I had felt a lump in my breast after a morning shower. I chalked it up to too much caffeine and gave up the coffee for about two weeks and the lump went away. That lump came back a couple more times during the year and disappeared after I changed something I was drinking or eating.

But around Thanksgiving 2006, the lump came back and I didn’t change anything about what I was doing during the holidays. I told myself that I would tackle it after Christmas. The holidays came and went but the lump stayed. When January rolled around, I got so busy that I told myself that I would deal with it later.

This is an incredibly common story among such busy, career women; in fact, it’s pretty common even among women who aren’t busy career women. For one thing, it’s not uncommon for masses to appear to grow and regress as breast tissue changes in density with hormonal fluctuations or in women with fibrocystic changes. A tumor that just reaches the threshold of being palpable can sometimes be easier to feel at some times than others. Also, never underestimate the deadly power of denial. What almost certainly happened is that the tumor was there all along but Tinkham managed to convince herself periodically that it had disappeared. In the meantime, her tumor grew, although one thing we can tell right away from this testimonial is that she is the prototypical case of a woman who, although her tumor was large enough to be stage IIIA, it had grown slowly enough that it hadn’t metastasized over the course of nearly a year and apparently hadn’t grown that much.

Although I’ve emphasized this time and time again over the last four years, one of the most common elements of a breast cancer testimonial is frequently the self-blame. Remember, we’re talking about what is more a religious decision than a scientific one. Consequently, it makes a lot of sense that part of the testimonial involves being lost and confused. Then, often the person giving the testimonial “confesses,” after which redemption is possible:

Somewhere inside me I knew that I had brought this ‘cancer’ on myself. I had always believed that the human body was designed to heal itself if given the right tools. I just hadn’t given it the right tools. I had to find what the right tools were. My path to self healing landed me on the Oprah Winfrey show in a short time in March of 2007. The Oprah show was a springboard for me and helped me reach doctors and researchers that I may not have been able to reach on my own.

Next comes the search for enlightenment:

I worked with massage therapists, reflexologists, nutritionists and energy healers. I ordered crystals to take away negative energy and balance my chakras. I learned to reinvent myself. During all this, I continued to get thermoscans that measured the heat in my body. I was seeing a slight decrease in heat (my research had taught me that cancer emits heat), but I still wasn’t where I wanted to be. I talked to alternative researchers from all over the world regarding cancer. Nothing opens the door faster than “I was on the Oprah Show”. There was only one person out of the 30 or more that I called who did not take or return my call. They all shared their findings with me and wished me luck.

She was also tempted by Satan in the form of physicians who only had her best interests at heart but whom she viewed as an impediment trying to keep her from salvation, as well as her own self-doubt:

I struggled with phone calls from doctors urging me to do something before it was too late. I struggled with my own conscience late at night when I lay in bed wondering if my own self confidence was going to be the death of me. But most of all I struggled with the questions of friends and family when they asked how I was feeling, am I keeping track of my progress, do I have a plan?

And, finally, salvation.

Ms. Tinkham finds her Savior, Dr. Young, who tells her what she wants to hear, namely that he knows what caused her cancer, that it was indeed her lifestyle choices to consume too much “acid,” and that the cure is a simple matter. She has control of her life again; her fall was her fault, and her salvation is similarly her initiative. It’s all very much like The Secret. She believes she brought her cancer on herself through her choices and thoughts, and, by thinking happy thoughts and following Robert Young’s woo, she just as fervently believes that she’s cured it.

As I pointed out before, breast cancer is a very heterogeneous disease with a highly variable prognosis. Remember the survival curve that I reprinted for women with untreated breast cancer. It’s very applicable to Kim Tinkham in that, like the women in the 1800s and early 1900s, she detected her cancer by palpation, not mammography. The median survival for the series was 2.7 years, which means that half of the women survived 2.7 years or longer. In fact, 18% of such women survived five years, and 3.6% survived 10 years or more. That’s why single testimonials for breast cancer “cures” can’t really tell us much. That’s why randomized clinical trials with large numbers of subjects are required to evaluate new therapeutic modalities for breast cancer.

Of course, I don’t wish Ms. Tinkham anything but the best. However, I know that the path she is on is virtually guaranteed to lead to the progression of her cancer, if it hasn’t already. Indeed, Dr. Young has led her astray. For one thing, not only is he treating her based on a false understanding of what cancer is, how it develops, and how it grows. Cancer is not a “poisonous acid liquid,” as Young claims it is, and the tumor is not the “body’s protective mechanism to encapsulate ‘spoiled’ or ‘poisoned’ cells from excess acid,” but that’s the basis of Young’s treatment. It’s utter quackery of the sort that routinely enrages me, and Ms. Tinkham is simply very fortunate that she appears to have the sort of tumor that is not extremely aggressive.

Unfortunately, sometimes the less aggressive tumors can result in some of the most horrific end results. One of the worst clinical problems in breast cancer is what’s known as the cuirasse tumor in a woman with no sign of metastases elsewhere in the body. Such chest wall invasion of tumors can result in a bleeding, stinking, gooey mess that slowly eats away the skin and soft tissue of the breast and chest wall. Surgery doesn’t usually control it for long, although chemotherapy and radiation sometimes can, as can tamoxifen if the tumor is strongly estrogen-receptor positive. But without a combined multimodality approach involving chemotherapy, hormonal therapy, surgery, and radiation therapy, cure is virtually impossible, and women like Ms. Tinkham can end up dying in horrible pain like Michaela Jakubczyk-Eckert.

I would spare her that fate if I could. If I can’t, then I would do what I can to spare other women who might be tempted by her chipper demeanor and book to follow her path.

Comments

  1. #1 storkdok
    March 26, 2009

    How sad, to be so deluded. Thanks for the update, Orac.

  2. #2 TechSkeptic
    March 26, 2009

    Sad,

    Now we just wait for the “i told you so” post some time in the next couple of years. And once we do we will hear form Dr. Young, “Well thank god she was on my acid reduction therapy, or should would not have enjoyed the extra three years she had”…

  3. #3 Jud
    March 26, 2009

    I wonder if it is remotely possible that if you emailed this post to Oprah, she would use it in an effort to help women seek real medical treatment.

  4. #4 Samurai Scientist
    March 26, 2009

    Interesting post. I think this was the most telling part:

    The holidays came and went but the lump stayed. When January rolled around, I got so busy that I told myself that I would deal with it later.

    This is an incredibly common story among such busy, career women; in fact, it’s pretty common even among women who aren’t busy career women.

    Now, while I am somewhat horrified that this woman did not just get a masectomy, it’s her life. People do a lot worse to themselves and others than opting out of medical treatment. As a scientist, I also think it’s an interesting experiment.

    But without a combined multimodality approach involving chemotherapy, hormonal therapy, surgery, and radiation therapy, cure is virtually impossible, and women like Ms. Tinkham can end up dying in horrible pain like Michaela Jakubczyk-Eckert.

    Most people in our country do go through the whole nine yards of breast cancer therapy, sometimes unnecessarily. We *need* some good negative controls. The statistics you cite about cancer survival are nearly 100 years old… time to repeat the experiment! I know it’s hard to do that b/c of medical ethics, but people like Kim Tinkham and Michaela Jakubczyk-Eckert might provide a good negative control.

    Or I guess we could just go to third-world countries and study breast cancer… has anybody done this?

  5. #5 Magnus
    March 26, 2009

    Sadly it is very hard to change someone’s mind once they have spent so much valuable time and effort on a belief system. She is obviously not only wrong about cancer, but deeply gone into the dark cave of woo.

    Also, I did a google search for “en curasse tumor.” I hope she doesn’t develop anything like it. The tumor looks horrible. But I bet you we won’t be seeing her on Oprah if her condition deteriorates.

  6. #6 catgirl
    March 26, 2009

    This just makes me sad. I think it’s irresponsible for Oprah to support this too.

  7. #7 Diane
    March 26, 2009

    Wow, SamuraiScientist, I am stunned. I hope I have misunderstood you. Are you suggesting that we go to third world countries and simply watch what happens when breast cancer goes untreated? Are you suggesting that there is a silver lining when women seek out quack therapies for breast cancer: that we’ll get “good negative controls”? I really hope I misunderstood you.

  8. #8 Julie Stahlhut
    March 26, 2009

    This kind of thing terrifies and enrages me to the point of tears.

    I have a few risk factors for breast cancer, and a somewhat out-of-proportion fear of the disease. But I know numerous women who are alive and healthy now because of early diagnosis and treatment. And a relative of my husband’s, whom I never met, refused treatment in favor of woo and died young as a result.

    You bet I do self-checks, and you bet I get my yearly mammograms. I have to deal with miserable anxiety about getting those mammograms. I have them read right away so that I won’t have to wait for the results. My last one, early this month, required a repeat because of an iffy image. It caused me ten minutes of intense fear. I can’t imagine what it would be like to get a call-back a day later and have to wait a week for a repeat mammogram.

    I would not trade five seconds of that anxiety and fear for a year of soothing denial and quackery.

  9. #9 Phoenix Woman
    March 26, 2009

    Chilling, Orac. Just — chilling.

    Meanwhile, a quick O/T:

    Salon ran an article today by the mother of an autistic child with a penchant for violence who had seemed “cured” but then drastically regressed with the onset of puberty. The horrors that mother went through make it easy to understand why some parents in her situation are so tempted by the easy promises of the antivaxers: “It’s not your fault, and it can be cured — just cleanse the bejayzus out of your child with highly toxic chelation therapy!”

    The letters were very sympathetic for the most part, and the antivaxers and woomeisters were starting to get the upper hand, when suddenly a person who is himself autistic started to provide a minority report:

    @AlecsMom

    “often causes the child to do things that are totally unaccountable, totally illogical”: simply untrue. I know of no evidence that the things autistic children do are “totally unaccountable, totally illogical”, and I would challenge you to produce it if you have it. As for knowing about autism, you might be interested to learn that I am myself autistic; I can speak at the very least for my own experiences.

    I have had issues with emotional outbursts for years. I have the good fortune to be quite intelligent and quite verbal. I have been, with the help of good psychologists, able to get a pretty good handle on my outbursts; but more importantly, and more relevant to the case at hand, I have been quite able to understand WHY I would blow up. Mind you, I have never been physically violent; most of my violent energies were turned inwards. But there is, in my experience and in the experience of most verbal autistic people, ALWAYS A REASON.

    The problem is that the press is far too quick to jump on the parent’s experiences, but they ENTIRELY IGNORE THE EXPERIENCE OF THE AUTISTIC PEOPLE THEMSELVES. There are entire parent’s groups, like “Autism Speaks” which refuse to allow autistic people to actually speak, who contrary to popular imagery are for the most part quite able to speak for themselves by the time they reach adulthood.

    And I am speaking for myself: violence is autistic people is often the result of intense frustration. There is quite a lot in an autistic person’s life that causes frustration, not the least of which the difficulty in balancing an intense need for personal contact with often a complete inability to achieve it. It’s not a mystery. But because deeply autistic people are unable to communicate this frustration the way you do, you imagine that they are “totally illogical”.

    Please read a bit. There is a lot of information out there. Speaking to actual autistic people might help, if the mighty “Autism Speaks” allows it, that is.
    — D Robert

  10. #10 Pheo
    March 26, 2009

    Samurai, science has already done studies with negative controls and there is a conclusive benefit for survival in breast cancer, most strikingly with surgical therapy. Every time a few modality is introduced into cancer therapy, a controlled trial is performed. Studies today are routinely stopped early if it becomes apparent that there is a significant downside to being in the negative control group. To continue to want a “negative control” when there is already an unequivocal downside to being in that group is majorly unethical.

  11. #11 TechSkeptic
    March 26, 2009

    Actually Dianne, he is not far off. It may not seem ethical, but when I was doing some scoliosis research, we had seriously considered doing many trials in other countries to get around federal limits on what we can and can’t do in America. I don’t think you misunderstood him at all. In fact if people are going to continue to stupidly use woo, even after direct education on what medicine can do, then we should try to use that information. This would only be unethical if you told them, or required them to use woo to test the efficacy of some drug. And even then, there is a fuzzy line (for example, if they they have a 100% chance of dying anyway, and they are willing to participate in a trail that contain placebo, is that OK?)

    I think Orac has done a few posts of ethical issues of medical research. Its not cut and dry.

    Julie,

    Your story about using woo and getting hurt has been repeated thousands of times. Its very sad.

  12. #12 doctorgoo
    March 26, 2009

    I agree with catgirl. I wonder what Oprah thinks about her part in preventing this poor lady from getting the proper cancer treatment she actually requires?

  13. #13 Pheo
    March 26, 2009

    TechSkeptic, if someone in your trial has a known 100% chance of dying, why would you want them in your trial at all? Wouldn’t that be like doing a cancer therapy trial on someone without cancer?

  14. #14 Aftercancer
    March 26, 2009

    I was diagnosed in April 2006 at age 38 with stage III breast cancer and contrary to the path that Ms. Tinkham I went through surgery, chemotherapy, radiation and now Aromatase inhibitors. Orac is correct that there is self blaming with breast cancer and one of the main reasons that I did everything that was possible/reasonable was so that if a recurrence should come I will know that I have done everything I could to fight this off.

    I try very hard to respect the choices that women make when dealing with this disease I am continually troubled when snake oil salesmen are allowed to continue plying their trade. But the research is very clear on what works to help keep women alive and it is sure as heck not baking soda. Kate@ http://aftercancernowwhat.blogspot.com

  15. #15 TechSkeptic
    March 26, 2009

    Pheo,

    not at all. Lets look at pancreatic cancer. The survival rate for that is essentially 0 (its 4% only because not all of the cases are diagnosed too late). So if I have a pill or process that I think will improve it, I would want people who will die anyway in my study to know if it works. They have to be there for blinding.

    You could..i suppose, not blind… but that leads to all sorts of wooeyness.

  16. #16 Dianne
    March 26, 2009

    Who doesn’t have a 100% chance of dying?

  17. #17 Jesse
    March 26, 2009

    Samuraiscientist:
    As a scientist, I also think it’s an interesting experiment.

    Sweet.
    Zombie.
    Jesus.

    Are you actually suggesting that proven therapies should be withheld or avoided because it makes ‘an interesting experiment’?

    Most people in our country do go through the whole nine yards of breast cancer therapy, sometimes unnecessarily. We *need* some good negative controls.

    We need negative controls?!?! WTF are you talking about? Withholding medical interventions is probably the single most unethical thing I can think about doing to a sick person.
    “No, sorry, we’re not going to give you Gleevec or chemotherapy or a bone marrow transplant for your Leukemia. We need some negative controls and hey, your number came up!”

    Or I guess we could just go to third-world countries and study breast cancer… has anybody done this?
    Great, now you’re suggesting some sort of South American Tuskegee scenario?

    You are off the rails with your notions (or lack thereof) of ethical science and medicine.

  18. #18 Orac
    March 26, 2009

    Most people in our country do go through the whole nine yards of breast cancer therapy, sometimes unnecessarily. We *need* some good negative controls. The statistics you cite about cancer survival are nearly 100 years old… time to repeat the experiment! I know it’s hard to do that b/c of medical ethics, but people like Kim Tinkham and Michaela Jakubczyk-Eckert might provide a good negative control.

    Do you honestly believe that the natural history of breast cancer has changed that much in 75 years that it’s time to “repeat the experiment”? Unlikely. Moreover, what you propose is completely unethical.

    What a coincidence that I have so recently slapped down someone who thinks it’s acceptable to use placebo controls in inappropriate circumstances:

    http://scienceblogs.com/insolence/2009/03/if_you_hand_me_some_stupid_yes_in_fact_i.php

    (Skip down to the last third or so of the post.)

    The bottom line is this, taken from the post above:

    Vox is so utterly clueless about how to do proper clinical trials that he actually thinks such a study would be just hunky dory to do. In suggesting a placebo-controlled trial of vaccines, he demonstrates that his understanding of medical science that is cringe-inducingly simplistic, of the “randomized clinical trials are the only way to answer a question” variety. Vox obviously doesn’t know that clinical trials can never be just about pure scientific method. The reason is very, very simple, but since Vox is apparently ignorant of it, I’ll make it real simple: Ethics. Clinical trial subjects are human beings, and their well-being must come first, part of which is minimizing the risk associated with experimental therapies and providing them with at least the standard of care. All clinical trials, in fact, are a careful balance between human subjects research ethics and scientific rigor. Human subjects protections must be paramount. In fact, they must come first, even if it means doing a trial that may not be “perfect” from a scientific standpoint.

    Contrary to Vox’s ignorant blather, there are a quite a few circumstances in which it is unethical to use a placebo control group in a clinical trial, and a randomized, double-blinded “vaccinated versus unvaccinated” study is one of them. I suggest that Vox read the Helsinki Declaration and the Belmont Report, which are two of the major documents that lay down the ethical precepts of modern clinical trials. Of the two, the Helsinki Declaration binds virtually all developed nations to its ethical precepts through mutual agreement. Specifically, according to the Helsinki Declaration, with only very limited exceptions and only with extreme justification both scientifically and ethically, a placebo may not be used unless no current proven effective intervention exists for the condition under study or the condition is so benign that no treatment is not an unacceptable option. That is most definitely not the case in vaccine trials. Proven effective preventatives of severe disease do exist, namely vaccines. In addition, no group is a clinical trial may receive less than the standard of care. It is thus unethical to have a placebo control group in a randomized clinical trial of vaccines. The only exception is when a disease for which no effective vaccine yet exists is being studied.

    What you propose, looking at the “natural history” of breast cancer or treating cancer patients with only placebos, is considered unethical–arguably even more so than what Vox proposed.

  19. #19 Techskeptic
    March 26, 2009

    LOL dianne!

  20. #20 TechSkeptic
    March 26, 2009

    Do I have it wrong then? I proposed using placebo in a case where there is almost certain death from the disease (a smile to dianne). Seems to me that if you don’t know for sure that your treatment will improve the outcome (or heck may make things worse), then placebo would be OK to use.

    a placebo may not be used unless no current proven effective intervention exists for the condition under study

    So this agrees with me, right? I realize its close to a fine line, but this is what I am trying to say.

  21. #21 Techskeptic
    March 26, 2009

    I dont wanna defend SS too much, becuase I see he is kind of wooey (i.e. he thinks piles of anecdote = data). I may be interpreting him incorrectly, but I do not think he was suggesting a third world tuskagee (I may be wrong).

    I think he is just saying that if people are going to brush off real medicine when dealing with cancer or aids, then perhaps we can use those folks for additional data. Scientists wouldnt be forcing a placebo group, they would be studying a group that has already chosen and wants to use placebo (acupuncture, homeopathy, etc).

    I don’t know maybe the ffort in tracking those folks isnt worth it.

  22. #22 rrt
    March 26, 2009

    Not trying to pile on Samurai Scientist here, but I think there’s another problem with his approach. In some ways I see where he’s coming from, since these folks are utterly determined to avoid science-based medicine. So since they’ve alredy doomed themselves, why not exploit the “no treatment control they provide? Aside from an ethical concern I’ll get to, I think they’re not actually a good control precisely BECAUSE they are so highly self-selected. You’re supposed to randomize your groups and do your best to ensure they are comprable. Instead, you’ll have hardcore woos vs. non-woos. There’s also the problem that even though the crap-based medicine they’re pursuing isn’t likely to help them, it is NOT necessarily a placebo, and it makes them further non-comprable to the experimental group unless you intend to subject them to the same woo treatments in addition to the experimental treatment.

    And while I’m not a philosopher or ethicist, I’m pretty sure there’s a distinct ethical conundrum in something like studying untreated third-world people. It ultimately places you in the position of expending resources to…do nothing. To just stand by and watch people suffer and die. There is an obvious “greater good” argument, but I think we can’t just blow off the “yeah…but you could have helped” argument.

  23. #23 moioci
    March 26, 2009

    Can the CA Board of Medicine not nail Young to the wall for practicing medicine without a license? According to Wikipedia, Utah has tried before, but failed. One would think that with the public exposure of this case, inaction by the medical board might be held up as tacit approval of his “practice.”

  24. #24 Julie Stahlhut
    March 26, 2009

    Don’t “negative controls” in a clinical trial for cancer or other life-threatening diseases involve the current standard of treatment, rather than no treatment at all?

  25. #25 thalarctos
    March 26, 2009

    Thanks, Orac–perfect timing!

    I worked with massage therapists, reflexologists, nutritionists and energy healers.

    I’m on deadline for delivering a trade magazine article, part of which is analyzing a piece of qualitative research by Billhult on the experiences of 8 female cancer patients on a Swedish oncology ward who received gentle massage.

    Some of the outcomes are descriptions of “feeling special”, “feeling strong”, regaining some small measure of autonomy, etc., and one thrust of the article is on the difference between qualitative outcomes and quantitative outcomes.

    However, in reading your article, I realized that I hadn’t mentioned that this massage was in addition to standard oncological care, rather than “alternative” to it, and I’m kind of horrified that I was glossing over that part in the interest of space/getting to the discussion. I had read the whole article, of course, and I was just quoting excerpts. I just took for granted the readers would automatically grok that it’s in a medical setting. I would hate it if someone thought I was recommending dumping treatment for massage, simply because I failed to mention that the context was both.

    I think in the context of statements like the one quoted above, it’s very important to make clear that this is massage in addition to standard care, not instead of, and I’m very glad I saw your post tonight, before I sent off my article, and not tomorrow morning.

    Thanks for helping me not inadvertently commit a sin of omission!

    [1] Billhult A, Dahlberg K. A meaningful relief from suffering experiences of massage in cancer care. Cancer Nurs. 2001 Jun;24(3):180-4.

  26. #26 thalarctos
    March 26, 2009

    Don’t “negative controls” in a clinical trial for cancer or other life-threatening diseases involve the current standard of treatment, rather than no treatment at all?

    yes, it’s unethical to cause someone harm through substandard treatment (in this case, placebo, if there is an accepted standard of care) as the price of taking part in a study.

  27. #27 Samurai Scientist
    March 27, 2009

    @Orac (and others), thanks for your replies.

    Do you honestly believe that the natural history of breast cancer has changed that much in 75 years that it’s time to “repeat the experiment”? Unlikely.

    Please. First off, anything over ten years old should be repeated – methods improve, and plenty of studies never reproduce. Second off, American nutrition, racial diversity, social habits have all changed significantly since the study you are citing.

    Moreover, what you propose is completely unethical. What a coincidence that I have so recently slapped down someone who thinks it’s acceptable to use placebo controls in inappropriate circumstances:

    I appreciate your analysis of ethics in clinical trials. However, you missed my point. I am not suggesting placebo controls. I am suggesting that you carefully study people who understand the risks, and nevertheless opt out of standard medical treatment.

  28. #28 Samurai Scientist
    March 27, 2009

    @TechSkeptic,
    when I was doing some scoliosis research, we had seriously considered doing many trials in other countries to get around federal limits on what we can and can’t do in America. I don’t think you misunderstood him at all. In fact if people are going to continue to stupidly use woo, even after direct education on what medicine can do, then we should try to use that information.

    YES

  29. #29 Richard Eis
    March 27, 2009

    -It turns out that Tinkham is still alive.-

    So….anyone wanna take bets up to next year?

  30. #30 Scott
    March 27, 2009

    First off, anything over ten years old should be repeated – methods improve, and plenty of studies never reproduce.

    When I read this, my jaw literally dropped. Did you even think about this claim for so much as a second? Such a standard would mean that absolutely nothing ever gets done, because the entire scientific profession would be occupied full-time doing this for even a minute fraction of ten-year-old results.

    Yes, often it makes sense to repeat older studies. But only if you have some actual cause to believe that the results may be different!

    Second off, American nutrition, racial diversity, social habits have all changed significantly since the study you are citing.

    And if there were evidence that such changes might have a real impact on the results – meaning in particular large enough to be disentangled from the confounders pointed out by rrt – then you might have a point. But the evidence does not in fact indicate that.

    Which is entirely beside the point since such a study would *still* be considered unethical by modern guidelines as I understand them even if the people in question wouldn’t have gotten treatment anyway.

  31. #31 Orac
    March 27, 2009

    Please. First off, anything over ten years old should be repeated – methods improve, and plenty of studies never reproduce. Second off, American nutrition, racial diversity, social habits have all changed significantly since the study you are citing.

    Even if this were all true and likely to change the natural history of breast cancer now as opposed to 100 years ago (which, again, is unlikely), ethics do not permit this.

    I appreciate your analysis of ethics in clinical trials. However, you missed my point. I am not suggesting placebo controls. I am suggesting that you carefully study people who understand the risks, and nevertheless opt out of standard medical treatment.

    That would still be unethical. Ethics do not permit us to “take advantage” of patients’ ignorance or obtuseness. It’s the same reason why it’s no longer considered ethical to do trials in Third World countries where even one group does not get the standard of care and why your earlier suggestion of going to Third World countries to study the natural history is breathtakingly unethical. (It was also bad science to boot.)

  32. #32 TechSkeptic
    March 27, 2009

    Ethics do not permit us to “take advantage” of patients’ ignorance or obtuseness.

    hmmm. I dont get this. If someone says “no” to a surgery or a treatment, why is it unethical to ask them to help improve the science by reporting on their future health? They could say “no” to that also if they wanted.

    I see two advantages of this. First to further show the improvement of evidence based medicine relative to placebo methods (or doing nothing). But even better is that withcommunication with the individuals, continued access and information can be transmitted if they remain regularly in contact. The person who chose woo, can still have regular screenings and so forth. How is that unethical?

    As for my comment about doing scoilosis trials in other countries, I should have been more clear, this was over 15 years ago, and it was with respect mostly to animal trials, not people.

  33. #33 Techskeptic
    March 27, 2009

    First off, anything over ten years old should be repeated – methods improve, and plenty of studies never reproduce.

    When I read this, my jaw literally dropped..

    Mine did too. We should only be retesting things with new observations. A new observation could be something like cancer rates rising after a long fall, or increased cases of measles, or something like that. But if a disease rate goes down and stays down, then something is being done correctly and does not need review. If a recovery rate improves and stays high, again no review necessary.

    Otherwise we are not learning.

    I think I just repeated what you said…sorry.

  34. #34 Chris
    March 27, 2009

    Techskeptic said “hmmm. I dont get this. If someone says “no” to a surgery or a treatment, why is it unethical to ask them to help improve the science by reporting on their future health? They could say “no” to that also if they wanted.”

    It is not ethical because they would not even be given a chance to say “no”. If I am reading SS correctly, the subjects/victims would not even be told about there is even any treatment available, that they could get if they could afford it. Just like the Tuskegee study of syphilis.

    Samurai Scientist, more reading for you (you have at least looked for the book by R. Barker Bausell?):
    http://www.amazon.com/Trick-Treatment-Undeniable-Alternative-Medicine/dp/0393066614/

  35. #35 rrt
    March 27, 2009

    Chris: Although SS can speak for himself, no, I don’t think you are reading him correctly at all. I think he is assuming these people have explicitly and emphatically refused science-based medicine, as is clear in the central testimonial Orac presented. The woman knows conventional treatment is available and is the “official” method…she just doesn’t believe it will help, and apparently thinks it will hurt.

    I think the ethical issue here is similar to a problem I’ve heard before which dovetails nicely with Orac’s other hobby: Allegedly (not sure if this is even true) some useful medical information was gleaned by Nazi scientists and/or doctors who performed horrible experiments on concentration camp prisoners. Do we use this information or is it forever tainted by it’s origin? Do we, by using it, offer an indirect encouragement of such actions, however small, or some tiny bit of acceptance of re crimes? There are lots of variations, but again, since I’m sure SS was suggesting we use fully-informed woo adherents, I think (?) some version of this Nazi problem is what’s at play here. But again, I Am Not An Ethicist ™.

  36. #36 Chris
    March 27, 2009

    Thanks, rrt… but it occurs to me that when you say “I think he is assuming these people have explicitly and emphatically refused science-based medicine, as is clear in the central testimonial Orac presented. The woman knows conventional treatment is available and is the “official” method…she just doesn’t believe it will help, and apparently thinks it will hurt.”

    Why go to a third world country for that? If you check http://whatstheharm.net/alternativemedicine.html , you will find lots of cases of untreated breast cancer. Or if you just go down to the infamous clinics in Mexico and query the patients/victims Samurai Scientist would get his answers.

  37. #37 TechSkeptic
    March 27, 2009

    “if you just go down to the infamous clinics in Mexico and query the patients/victims Samurai Scientist would get his answer”

    I think that is all he was suggesting. But you could do better than that. You could actually have them enter a trial and rejecting the medicine for woo, by their choice. This way you could control for other factors, like medical history, wealth, etc etc.

    I’m still failing to see the ethical problem with that. I don’t think it endorses woo. It may even give someone who has gone to way of the woo to re-enter real medicine later after monthly consultations and checkups.

  38. #38 perceval
    March 27, 2009

    “if you just go down to the infamous clinics in Mexico and query the patients/victims Samurai Scientist would get his answer”

    If you do that, you *have* to then offer these women proper medical care. Also, there are huge confounders here: women who go to Mexico / women in third world countries may well have a very different diet / lifestyle / previous history than women who seek real medical care. So, if data from 100 years ago cannot be safely extrapolated to present-day conditions, then how can data from people in third-world countries be extrapolated to the third world?

    And, Samurai Scientist, with my apologies to Orac, I would like to channel one of his SciBlings by the name of Comrade Physioprof. I am normally rather mild-mannered. I do have some pro-woo tendencies and know my way around alternative medicine.

    with the disclaimer out of the way:

    YOU FUCKING SCUMBAG!

    Orac has more compassion and genuine empathy in his little finger than you have in your whole body.

    How DARE you suggest that women should die horrific deaths just because you IDIOT need more data? Have you READ about Michaela’s death? Have you seen the pictures? Are you aware that something like this is the highly possible fate of women with un-treated breast cancer?

    Besides, any study done to “convince” self-important twats like you would be useless because you quite obviously are so statistically and methodologically challenged that you are unable to read and assimilate the existing literature, which would give you an answer that’s maybe not as clear cut as you would like, but at least an ETHICAL answer.

    My own mother won’t go for a mammogram because she is scared senseless after having cared for both of my grandmothers during the cancer that took their lives. (Seventies in Germany.)

    This is not about palliative care and end-of-life. Clearly, when cancer is terminal, there’s a question whether more chemo is warranted, and I’m sure Orac has a highly informed opinion.

    This is about giving women MORE LIFE. What the HELL is wrong with that????

    My mother-in-law has had three episodes of chemo (plus radiation and/or steel). She’s been well enough to see two more grandchildren be born and travels the world. Science tells me we have the treatment to thank for that. Stage III Ovarian cancer. Yes, chemo’s not nice, and PubMed tells me that people are doing their best to develop new treatments with fewer side effects. (Hint: personal anecdote explained by scientific findings is not equal to anecdote “explained” by negating the laws of physics)

    As for those commenters who were talking about exploiting women in the third world, who already have a far worse and shorter life than women in the “first world”, for the sake of their sweet science – I hope that you take an Ethics class. Pronto. Or go read Dr Free-Ride.

    Please, SS (interesting initials by the way, speaking as a German), do us a favour and go away. Harakiri or something. Whatever. Just fuck off.

  39. #39 HCN
    March 27, 2009

    Or, better yet, check the available medical journals:
    http://www.ncbi.nlm.nih.gov/pubmed/12974558
    Eur J Epidemiol. 2003;18(8):817-22.
    Use of CAM results in delay in seeking medical advice for breast cancer.

    “Patients who delayed seeking medical advice more often had positive axillary nodes and stage III/IV disease. Breast cancer patients in Pakistan frequently (53%) delay seeking medical advice. Antecedent practice of CAM is widespread and a common underlying reason. The delay results in significant worsening of the disease process.”

  40. #40 Samurai Scientist
    March 27, 2009

    @Orac, Tech,

    We should only be retesting things with new observations. A new observation could be something like cancer rates rising after a long fall, or increased cases of measles, or something like that. But if a disease rate goes down and stays down, then something is being done correctly and does not need review. If a recovery rate improves and stays high, again no review necessary.

    Disease rate going down and staying down… hmmm. How are you going to measure that? How are you going to prove that it’s your intervention that’s causing the change?

    Stuff gets published all the time that turns out to be bullshit. We know because people repeat those experiments and they don’t work. Experiments should be repeated as often as possible, preferably with improved methods.

    http://www.ncbi.nlm.nih.gov/pubmed/12974558

    Interesting, thanks for the link. It would be interesting to see some longer-term studies.

  41. #41 Samurai Scientist
    March 27, 2009

    @Chris,
    Amazon links

    I’ll try to take a look, but honestly I don’t need any convincing on the topic of alternative medicine. I neither practice any alternative medicine nor believe from a scientific POV that specific alternative “treatments” are likely to help much against cancer (although when it comes to diet, who knows).

    I don’t waste much time trying to criticize alternative medicine. It’s obvious to me that alternative medicine is pretty flawed. My interest, as a scientist, is to what extent our standard medical care suffers from the same kinds of problems.

  42. #42 Chris
    March 27, 2009

    The first book has instructions on evaluating medical studies.

    They should both be in your local library.

  43. #43 Chris
    March 27, 2009

    SS said “Interesting, thanks for the link. It would be interesting to see some longer-term studies.”

    OMG, that is cruel!!! The object is to make sure these women get the treatment they need earlier, not to use them as guinea pigs. What happens with untreated breast cancer has been known for decades: the point is to make sure the most effective treatment be available even in places like that.

  44. #44 Joseph C.
    March 28, 2009

    I’m still failing to see the ethical problem with that. I don’t think it endorses woo. It may even give someone who has gone to way of the woo to re-enter real medicine later after monthly consultations and checkups.

    See but then investigator is in the awkward position of having an incentive to keep subjects in the untreated/woo arm of the study. While I don’t think most researchers would actively brow beat subject who change their mind into delaying treatment until the end of the study, it does put the researcher in the very ethically questionable position of gaining from possibly needless suffering and death brought on by ignorance, denial, magical thinking, and the like.

  45. #45 Samurai Scientist
    March 28, 2009

    ethics

    I acknowledge that the experiments I suggested above would never pass muster in an institutional review board. I have different ethical values than most people. To me, forcing an ape to die in the name of research is questionable ethics. Letting an educated person choose his or her destiny? Doesn’t bother me very much.

    I guess my view is a little unusual. But that doesn’t mean I’m wrong.

  46. #46 Mrs Ward
    March 28, 2009

    Mr. Orac, I found your site due to your vaccine argument with Vox Day. I’m glad I did. I had planned to do nothing if diagnosed with breast cancer, thinking that the cure was worse than dying from the disease. (Not that I think I’ll get breast cancer–no family history of any cancers, thanks be to God.) After reading about Michaela, I will do whatever my doctor advises: I had no idea that breast cancer could be so disgusting and painful. Now I know better.

    Thank you for writing about Michaela; but perhaps you could tell me how alternative medicine got the nickname “woo.” Is there a previous post in which this is explained?

  47. #48 Mrs Ward
    March 28, 2009

    Thanks, HCN.

  48. #49 Lyr
    March 28, 2009

    “The tumor is harmless”? O-kay…

    And sepsis isn’t caused by bacterial infection? Is this some kind of new theory of disease that I wasn’t taught in vet school?

  49. #50 Marilyn Mann
    March 29, 2009

    Orac,

    Thanks for this.

    I am curious whether you have any thoughts on Cancer Treatment Centers of America. A friend of mine has stage IV colon cancer and at one point was considering going to one of their centers, which would have involved traveling to another city. I looked at their website and they seem to promote both conventional treatment and various types of woo. The CTCA website seems to be quite a marketing operation, with patient testimonials, videos, ability to chat online with CTCA representatives. My friend, who ordinarily is not that naive a person, went so far as to talk to one of CTCA’s sales reps over the phone and it sounded like the rep gave her a hard sell.

    Fortunately, my friend asked my advice as to whether she should sign up. I had never heard of CTCA, but after looking at their website I told her that in my opinion she would be better off sticking with one of the local cancer centers, which include Georgetown, Hopkins, Washington Hospital Center, and others in the DC/Baltimore area.

    Granted, what CTCA is selling is both conventional treatment and “complementary” medicine. Here is the url in case anyone is curious: http://www.cancercenter.com/. So it is not the same thing as what Orac is describing in his post. Nonetheless, my feeling is that CTCA is selling a kind of false hope.

    I wonder what their rep is in the oncology community.

  50. #51 Joe
    March 29, 2009

    I once heard a talk from the chief naturopath (Lisa Alschuler, something like that) at CTCA. She said 90% of cancer is preventable (the ACS puts it at 67%). Half of preventable cancer is due to smoking, she never mentioned that. Also, 90% of healing occurs at night (I guess 90% is a persuasive number).

    It would be unfortunate if this place offered woo instead of reliable treatment.

  51. #52 ???
    March 31, 2009

    a particularly dubious “alternative” practitioner named Robert O. Young

    Marcus Welby believes in woo? Who knew?

    Oh, wait…never mind.

  52. #54 D Hazen
    September 29, 2010

    Isn’t it interesting that there is no author’s name to this article? I believe that this person has not read all of Dr. Young’s work or he/she would understand that he is on the right path! Also this author must be a coward, to not put a name. All I can say is that The PH Miracle works! Try reading for yourself and decide on your own if it all makes sense? My husband is no longer a diabetic because of the pH Miracle. Please read the book, The pH Miracle, Revised and Updated. Decide for yourself!

  53. #55 Chris
    September 29, 2010

    The worst secret in the world is who the blog owner is, and it is quite telling that you looked at this page for a year and could not find out.

  54. #56 Composer99
    September 29, 2010

    D. Hazen, Internet necromancer.

  55. #57 holisticpractitioner
    January 6, 2011

    Finally finish reading your posts on Cancer stories …. This is the part which I never know.
    It is real good and provides an opportunity for broader consideration. Glad that cancer series has been of some value =)
    Thanks : )

  56. #58 Chris
    January 6, 2011

    You are a repetitive spamming Necromancer.

  57. #59 Nina Anne
    January 20, 2011

    It is interesting to read some of these posts. My name is Nina Anne and I have Stage III breast cancer. I was diagnosed in July 2005 at Stage II. Since then I have not had any chemo/radiation/mastectomy. I refused it. I don’t want to know how long I have to live either. I choose to live each day like it is my last day. I am happier that way. I don’t see holistic wannabe’s either although I have been trying to follow a holistic approach. I chose this route because I personally don’t believe in putting that crap (chemo and radiation) in your body to fix one thing and yet damage the rest of your vital organs. I am not with that! I have heard so many people tell me that they have newer forms of cancer therapy and that the chemo/radiation is directed in one spot. I don’t believe it. Anyway, I choose my walk and I am happy in what I have chosen. Will I die soon? Probably. But I know where I am going when I do die and I don’t want or like people telling me how to live or conduct my medical therapies. You can be concerned for others in how they choose to live their lives but don’t try and run their lives. You will lose friends in the process.

  58. #60 Chris
    January 20, 2011

    How is telling people that Robert Young is a clueless quack who bought a degree from a diploma mill and doesn’t know the first thing about chemistry telling people how to live?

    Also, why did you choose to grace us with your observations on an almost two year old article, and not the more recent one linked to at the top of this page. The one which announces the death of Kim Tinkham.

  59. #61 HVAC Alexandria VA
    December 5, 2011

    Non-treatment of cancer, by just listening to that phrase is really horrifying. My great grand mother before was diagnosed to have a breast cancer but she refused to undergo treatments. I don’t know if her decision was right but she lasted until the age more than 60s.

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