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Death by “alternative” medicine: Who’s to blame?

One of the more annoying duties I used to have several years ago at our cancer center was to “show the flag” at our various affiliates by attending their tumor boards. I say “annoying” not so much because the tumor boards themselves were onerous or even uninteresting but rather because traveling to them used to cut into my already limited time for research, given that these tumor boards were always scheduled on days on which I didn’t have to be in clinic or the operating room. In other words, they always took place on my research days.

One of our affiliates was a nearly an hour and a half drive away, and many of them were close to an hour away. When you add up travel time and the tumor board, that’s easily more than three hours eaten up, all too often right in the middle of the day. In actuality, though, several of the tumor boards themselves were quite good, one of which being the aforementioned one that required nearly a 90 minute drive to reach. (It helped that they served a really nice breakfast there, too, but they also have really stimulating discussion about various cancer cases.) One of the weird things about these tumor boards is that I was viewed as–and I quote–the “outside expert.” This was particularly disconcerting the first year I had the job. There I was, fresh out of fellowship, being looked up to as the “expert” by physicians, many of whom who may have been in practice for 10, 20, or even 30 years. Somehow I managed to muddle through without making too big a fool of myself. These days, years later, I almost even feel as though, for breast cancer at least, I am worthy of the appellation of “outside expert.” Experience does matter, I guess.

Maybe about three years ago, I found myself attending a tumor board at one of our affiliates that brought up issues that I do not see that often. It brought up a rather difficult issue, one that I hadn’t given as much thought to before as perhaps I should have or that I have in the years since I started blogging actively about so-called “alternative” medicine. I hadn’t been expecting anything out of the ordinary when I arrived at the hospital auditorium. As usual, I said hello to the oncologist who runs the tumor board, a private practice oncologist for whom I had considerable respect and with whom I have shared a few patients. There were some amusing technological difficulties with the computer projection of the radiological studies and pathology slides having to do with a problem moving between a Mac and a PC with the projector, and my attempt to apply my knowledge of the Macintosh in the service of helping them figure out the problem was in essence rebuffed. So, I sat down and let them figure it out on their own without my input, concentrating instead on the coffee and breakfast that was provided. (A common theme for morning tumor boards is food, in case you hadn’t guessed by now. Attendance rises in direct proportion to the quality and quantity of food.)

The first two cases presented were not particularly unusual, and we discussed them in a pretty standard fashion, but the last case presented was tragic in the extreme. If you’ve been a regular reader of this blog, you may have an idea of the general parameters, but this one shocked even me. The case involved a woman in her early 30′s, who presented to a surgeon with a small palpable breast mass. Her primary care doctor had appropriately ordered a mammogram and ultrasound, which the surgeon dutifully presented. The odd thing was that the films were from 2002. The surgeon presenting explained that this woman had presented over three years prior to him for the evaluation of this mass. On mammogram, there was a mass less than 1 cm in diameter, which was confirmed by ultrasound. The edges of the mass weren’t quite smooth enough to consider it very likely benign. Consequently, the mass fell into that gray areay that we in the biz call “indeterminate,” which is basically a code word for “we don’t know if it’s cancer or not and the imaging doesn’t look sufficiently ‘benign’ for us just to follow it.” To put it even more bluntly, it needed a biopsy. The surgeon described how he dutifully did an ultrasound-guided fine needle aspiration of the small nodule.

The results? Adenocarcinoma. Breast cancer. Not much of a surprise, given the appearance on ultrasound.

Here’s where things got interesting. Apparently, this woman was a die-hard believer in “alternative medicine.” And I do mean “die hard,” as she will quite likely die very hard for her beliefs, if she has not already in the interval between this tumor board and now. She absolutely refused any surgery or treatment for her cancer. It was explained to her that a less than 1 cm tumor with no evidence of spread to the lymph nodes carried a highly favorable prognosis, with upwards of 93% long term survival with proper surgery and radiation therapy combined with adjuvant chemotherapy and/or hormonal therapy. Here was a patient surgeons love, because we have a very high probability of curing her.

This woman would have none of it. She wanted to pursue “alternative” medicine. And pursue it she did, with a vengeance. For three years, she disappeared off the radar screen.

A few weeks prior to the tumor board, she had reappeared in this surgeon’s office. In the interim, she had tried Essiac tea, homeopathy, Hoxsey therapy, the Gerson treatment, and Reiki therapy, among others, all the while visiting various “healers.” The results? If you’ve been reading here, you can guess the result.

Her tumor had progressed.

Not only had the tumor progressed, but it had progressed a lot. When the surgeon saw her again, now more than three years after her diagnosis, her tumor had grown to 5-6 cm in size. It was now stuck to the chest wall, distorting her nipple, and ulcerating through the skin in a five centimeter area of bleeding, disgusting goo. Indeed, the surgeon even showed a picture of it. In addition, she had developed easily palpable axillary lymph nodes (the lymph nodes under the arm) on physical exam and complained of bone pain strongly suggestive of metastases to the bone. Even if she did not now have metatastic disease to the bone, her chances of cure had been vastly diminished, as she had clearly moved up from a highly curable clinical Stage I to a difficult to cure clinical stage IIIC. (If she had bone metastases, she was no longer curable at all.) This patient was in serious trouble. You would think that, finally–finally–she would have realized her mistake in not having gone with surgery and conventional medicine.

You would be mistaken.

The patient still steadfastly refused all surgery, chemotherapy, and radiation. Against all evidence that the course she had chosen thus far had not resulted in the elimination of her tumor that she expected, she nonetheless insisted on continuing with various alternative medicine treatments. Against all evidence to the contrary, she continued to refuse any form of “conventional medicine.” She still believed that her ” healer” could save her life, even though she now had a large, bleeding, stinking mass in her breast stuck to her chest wall that had three years ago been a pea-sized cancer that could have easily been excised with a small surgical procedure. She was well on her way to dying in the horrific way that so many women died of this disease 100 years ago. And the cost was more than just the growth of the tumor. The woman had three small children at the time of her diagnosis. Seeing what was happening to her, her husband had finally recently filed for divorce and custody of the children, basing his claim on the fact that, due to her progressing cancer, the poor woman would soon no longer be able to care for them properly and that she had rebuffed all of his attempts to persuade her to get proper medical treatment. He was right. Hearing this tragic case, I felt myself becoming simultaneously enraged and a little bit choked up. By presenting this case, the surgeon was in essence asking for advice, and none of us really had any words of wisdom to give him. He was up against religious or quasireligious fervor, and no amount of reality would change this woman’s mind in any way. He was desperate to help her but utterly helpless in the face of her beliefs. His only hope was that she had actually come to him again. Maybe he could finally reach her.

It was at this point the discussion took a second unexpected turn.

The medical oncologist who ran this particular tumor board stood up and addressed the attendees. She emphatically said that she viewed this case as a failure of the medical system. The medical system failed, she claimed, because it had been unable to reach this woman, because this woman had not gotten psychological help to help her to see the truly self-destructive course that she was taking. I had to disagree strongly and told her so.

The discussion became considerably more animated after that, with several doctors taking issue, including me.

How, I (and others) asked, could this be a failure of the medical system when the woman was given all the information necessary to make an informed choice and chose quackery? How, we asked, can this be a failure of the medical system when the woman continued in this course despite the fact that her primary care doctor, her surgeon, and her family begged her over and over and over again to reconsider? How, we asked, can this be a failure of the medical system when the tumor’s progression was obvious to even the most casual observer, given that it now was bleeding and eroding through the skin? We pointed out that the old cliché that you can take a horse to water but you can’t make him drink applies very well to this case. The woman had been given every opportunity. She had been brought right up to the water three years ago. It was not the system’s fault that she wouldn’t take the last step and take a drink. She had been (and was at the time of the tumor board) a competent adult. (I do not know if she still is, because I do not know if she is still alive.) Unlike minors, she is perfectly free to refuse treatment or to opt for whatever treatment she wishes, no matter how blatant the quackery. There are just some people for whom no amount of counseling or discussion will persuade. Respect for patient autonomy tells us that we must not force her to undergo the appropriate treatment, no matter how much it breaks our hearts to see a young woman with three young children throw her life way.

Faced with these objections, the oncologist changed her emphasis a little, and said that, had this been her patient, she would have viewed the failure to persuade her to see reason as a personal failure. I could see this point of view somewhat, but even so she seemed to be being a bit harsh on herself. On the one hand, I could respect her point of view, in which the inability to persuade a patient not to throw her life away would have been viewed as a profound professional and personal failure as a doctor. On the other hand, not everyone can be persuaded, no matter how good a physician is. If this woman had any mental illness that was leading her down this path, it couldn’t be discerned, unless one defines failure to face reality as a mental illness. If that were the case, a large proportion of the population would have to be hospitalized, given the rampant credulity and failure to face reality about so many issues that plagues our society. Indeed, refusing to face reality seems to be part of human nature. It’s just uncommon for it to be taken to such an extreme.

I used to be very reluctant to agree with a couple of my co-bloggers when they call alternative medicine “cult” medicine, but this woman demonstrated that maybe they know something I don’t. What else could explain her extreme inability to admit what was happening to her? What else could explain her inability to recognize or admit that all the quackery she had tried up until that point had failed utterly? What else could explain her intention to pursue even more of the same? I still think of her, two or three years later. These days, I wonder if she is still alive. Chances are, her faith in “alternative” medicine killed her sometime between that tumor board and now.

The discussion ended unresolved, although most of us weren’t able to think of anything further that could have been done in 2002, nor could we think of anything that could be done then, given that the patient was still refusing any sort of non-alternative therapy. Indeed, we were rather puzzled why she came back now if she were sure that she had no intention of accepting any sort of conventional therapy. Perhaps even she didn’t know, or perhaps her coming back was a cry for help, a manifestation of a realization that she didn’t want to face that her choice was clearly not working and her health was seriously deterioriating. Whatever the case, in situations like this, no matter how frustrated and powerless we feel, all we can do as doctors is to be there, ready to help and nonjudgmental as possible–and hope that when and if the patient comes back there is still something we can do.

Posted in: Health Fraud

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612 thoughts on “Death by “alternative” medicine: Who’s to blame?

  1. David – thanks for the touching story. However, I was expecting your discussion to go to the obvious point that the people who are truly to blame are the “alternative healers” who offered her false hope in their ineffective treatments. They lured her away from effective medicine, and they kept her away despite the obvious failure of their treatments. They stole her life with their fraud.

    Blame also lies at the feet of the various regulatory bodies – the legislators who have passed laws allowing charlatans to practice medicine without a license as long as they call it “alternative.” Forty years ago they would have been shut down, now they thrive in a friendly environment.

    To a lesser extent blame lies with those members of the media who failed to exercise basic journalistic integrity by credulously promoting utter nonsense. Some surveys have shown that acceptance of CAM is largely due to positive media reporting. Every time a charlatan appears on Oprah, more people like this patient will die as a result.

    And finally, I do think the medical profession shares some of the blame – as a profession we have sat on the sidelines while antiscientific ideology has infiltrated medicine at every level. Every physician who is not outraged and actively working against the rise of CAM is to blame.

  2. overshoot says:

    Orac, please duck over to MHA and post Part 1.

    A common theme there (as you no doubt remember) is the “you never hear of <insert woo> failing, so it always works” argumentum ad ignoratum.

    The fact that there’s no way, even now, to tell what has happened to this woman is a fine example of why: woo runs on amnesia.

  3. What a tragedy. My only objection is to the admonition to be “nonjudgmental.” I’m sure you didn’t mean it in the way I’m thinking of it, but: if there was a failure of the medical profession, it may have been that her doctors were not judgmental enough. Not of her, per se, but of her choices and of those who provided those choices. Did her doctors tell her that those methods are worthless quackery and that their practitioners are either charlatans or know-nothing ditzes? Sure, I wouldn’t have said those things at first, either, because I would have hoped to get through to her without having to resort to such definitive, but provocative, language. But later on…

    I’m one of the “cult” bloggers, in case it isn’t obvious.

    Dr. Moran, I hope you’re still out there, because this is the theme of a lot of your comments and I’m sure you have some useful thoughts about it.

  4. I hadn’t seen the other comments when I posted mine. I agree totally with Steve Novella and Overshoot.

  5. weing says:

    It is a failure of our medical system as we have allowed quackery to be practiced.

  6. weing says:

    Sorry about that. I had to see a patient and didn’t refresh my screen and hadn’t seen the other comments. I see Dr Novella already mentioned my point.

  7. David Gorski says:

    Did her doctors tell her that those methods are worthless quackery and that their practitioners are either charlatans or know-nothing ditzes?

    Yes, to the first part, in no uncertain terms, although the words “useless” and “ineffective” were used.

    I’m surprised, though, that you would say that the doctors should have told her that her “alternative” practitioners are charlatans or know-nothing ditzes. Remember, the goal is to try to get the patient to accept and undergo science- and evidence-based treatments and thereby to save her life. That goal is the only goal that should be in a doctor’s mind when facing such a patient. The price of failure is the death of the patient.

    In my experience, the quickest and surest way to alienate such a patient and to guarantee that she will not listen to a thing that you say after that is to start attacking her current practitioners in such a nakedly judgmental way. Because the patient chose those practitioners, she will almost inevitably interpret such attacks on her practitioners, no matter how justified, how well-argued, or how true, as attacks on herself. Indeed, calling the practitioners “quacks” and “charlatans,” particularly on the first visit, is about as counterproductive a strategy as I can imagine. (It’s rarely such a great idea later on, either, after the patient has invested a great deal of time, money, and herself in the woo in question.) That’s why I must strongly disagree with the last part of your statement. It may be appropriate at some point to drop the “Q-bomb” (perhaps later on, after her tumor had grown), but telling when that point is is very difficult and fraught with peril. More often than not, such characterizations will not help the physician attain his goal of persuading the patient to let him try to save her life.

    If in some forms alt-med is indeed a “cult,” as you characterize it, ask yourself this: What’s the usual reaction of cult members to direct attacks on their beliefs or their cult leader? It ain’t to say, “Oh, yes, you’re quite right. How could I have been so stupid?” It’s to circle the wagons, view the attacker as an enemy and infidel, and to push back or run away.

    Sometimes the best you can do is to persuade the patient to accept science-based therapies while at the same time pursuing woo. If the woo probably doesn’t interfere with effective therapy, the compromise is acceptable. Sometimes you can even sell it as “using both methods.” As long as it doesn’t interfere with real therapy, most doctors will swallow their objections and hold their tongues in order to see that the patient is cared for as appropriately as possible. I certainly would.

    Steve:

    I mostly agree with you. All of those factors are in fact to blame. However, the point of this post was not to be a general treatise on the factors that are to blame for the infiltration of quackery and its tolerance, using this case as an introduction. I’ve written such posts here and elsewhere. Rather, it was to focus very narrowly on just one aspect of the issue, the role of individual practitioners and how powerless we can be to dissuade a patient like this from such a self-destructive path, thanks to the cult-like nature of a lot of “alt-med” devotion.

    I also wanted to express my puzzlement over the apparent attitude of one of the oncologists at the tumor board, who seemed to be laboring under the delusion that she could persuade any patient to accept science-based therapy. It’s a noble sentiment, but ultimately self-defeating. It also betrays a bit of hubris for anyone to think that she should always be able to persuade a patient of the rightness of her recommended course of action, and it’s an utterly unrealistic standard, to boot. Holding oneself to such an unattainable and unrealistic standard is a guarantee that when one fails one will place far more blame on oneself than is warranted. Not all such patients can be persuaded to see the light.

    That was more the point of my post. Perhaps I didn’t do as good a job of explaining it as I thought, or maybe I should have given the post a different title.

  8. qetzal says:

    I also wanted to express my puzzlement over the apparent attitude of one of the oncologists at the tumor board, who seemed to be laboring under the delusion that she could persuade any patient to accept science-based therapy. It’s a noble sentiment, but ultimately self-defeating. It also betrays a bit of hubris for anyone to think that they should always be able to persuade a patient of the rightness of their recommended course of action, and it’s an utterly unrealistic standard, to boot.

    I might even go a step further. If a doctor were always able to persuade any patient to accept the MD’s recommendation, that would destroy the principle of patient consent. There’s no consent if the patient is ultimately incapable of making any other choice.

    Accordingly, I would argue that “omni-persuasiveness” would actually be a bad thing.

  9. juryjone says:

    David,

    I am confused. In your latest comment you seem to be of two minds. On one side, you seem to say that the oncologist could have persuasive power with the patient, when you say that calling the alt-med practitioners charlatans would alienate the patient (alienate her how? Was she on the fence?) on the other side, you say that the oncologist was wrong for thinking that anything could have changed the patient’s mind.

    Which is it? It’s my opinion that, once it was established that the patient could not be reasoned with, the doctors are free to use words like “quack” and “charlatan”. It doesn’t do anything to convince the patient that she should be using science-based medicine, but it can’t help but give the doctors the satisfaction of “calling a spade a spade”.

  10. daedalus2u says:

    This is the evil that prospers when good people do nothing.

  11. David Gorski says:

    It’s my opinion that, once it was established that the patient could not be reasoned with, the doctors are free to use words like “quack” and “charlatan”. It doesn’t do anything to convince the patient that she should be using science-based medicine, but it can’t help but give the doctors the satisfaction of “calling a spade a spade”.

    It’s not about getting the “satisfaction of calling a spade a spade.” Who cares if a doctor feels such satisfaction? It’s not about the doctor, anyway, nor should it be; it’s about the patient. It’s about never closing the door for the patient to come back if she changes her mind.

  12. juryjone says:

    Once again (although you couldn’t know that since that was my first post here) I have expressed myself poorly. I wasn’t trying to say that it was about the doctor – at least, no more than you were when you discussed on the tumor board the feeling of ineffectiveness on the part of the doctors.

    However, you still haven’t answered my question. Is the doctor able to influence the patient that is “dead-set” on alt-med? If so, I can see the need to “pull punches” when it comes to expressing their opinions on alt-med practitioners. If not, then what does it matter if you call them on being “know-nothing ditzes”?

    It seems to me that you are telling doctors not to feel bad because they can’t change the mind of the patient – except when they do.

  13. Harriet Hall says:

    Christian Scientists – should MDs tell them their religion is nonsense?

    Patients who don’t try alternative treatments but simply refuse life-saving treatments for whatever reason – maybe they want to die – is it our responsibility to change their mind?

    I think the answer to both questions is no. Doctors have a responsibility to patients but patients have the ultimate responsibility for their own actions.

    One thing we could do much better is develop individual long-term caring relationships with patients so they might be more willing to trust us and let us educate them. A good family physician can fill that role.

    The ultimate solution is (1) better education in science and critical thinking, and (2) prosecution of quacks.

  14. pec says:

    You are implying that you now have reliable cures for breast cancer. But I had heard that you don’t. It seems like you’re saying this patient would definitely have been saved by your treatments, if started in the early stage. Or are you saying that although you have no reliable cures, death from breast cancer is less unpleasant now, because of new surgical technology?

    You leave a lot unstated, expecting us to fill in the missing info with anti-alternative science assumptions.

  15. This is the art of medicine – In practice you sometimes have to balance antithetical goals. On the one hand, for example, you want to properly motivate patients with a realistic assessment of the situation – how severe is their disease, what is the likely outcome if they refuse treatment, etc. You also want to maintain a therapeutic relationship, and you also want to avoid potentially harmful psychological stress. You have to reach an individual balance in each case – there is no algorithm.

    There is a skill to strongly advocating SBM and criticizing quackery without alienating the patient. That doesn’t mean you can always be successful – sometimes the patient is truly a lost cause.

    (I sense there is a blog entry in there.) :)

  16. David Gorski says:

    You are implying that you now have reliable cures for breast cancer. But I had heard that you don’t.

    The long term survival rate for properly treated stage I breast cancer like the one this patient had is over 93%. That’s pretty reliable, in my book.

    Even for a patient with a tumor as advanced as this patient’s was when she presented again three years later, we have a great deal to offer for palliation and lengthening survival, even if we can’t cure breast cancer if there are distant metastases.

  17. For those who have reading comprehension problems, David wrote: “It was explained to her that a less than 1 cm tumor with no evidence of spread to the lymph nodes carried a highly favorable prognosis, with upwards of 93% long term survival with proper surgery and radiation therapy combined with adjuvant chemotherapy and/or hormonal therapy. Here was a patient surgeons love, because we have a very high probability of curing her.”

    93% long term survival – that is a very specific evidence-based statement of probable outcome.

  18. Wicked Lad says:

    What a tragic, thought-provoking story, and what a thoughtful discussion! Thank you, Dr. Gorski and commenters.

    From Dr. Gorski’s post:

    What else could explain her extreme inability to admit what was happening to her?

    Perhaps pride over her long-running disagreement with her husband and perhaps others?

  19. Michelle B says:

    What terrible situation this woman is/was in. Similar to a suicidal patient asking for help almost. Very moving post which shows me how science based doctors have so much to balance, while quacks are jerks with simplistic and horribly dangerous perspectives.

    Since Pec’s reading comprehension is so poor she should go to a chiropractor at least 20x daily, ease up that blocked energy so she can understand what a teenager could have after reading this post.

  20. Fifi says:

    I suspect that those of us who deal with knowledge as fluid and evolving have a greater understanding that few things (if anything) are written in stone. This makes it easy to change tack quickly and reasonably effortlessly. We also tend to get less hung up on being wrong – it’s not so…personal. Faith, by its very nature, is not only personal but also requires blocking out anything that undermines faith (denial is built into faith in many ways, it’s perhaps even essential for faith).

    As for the woman being talked about in the blog. I actually think it would take a huge amount of personal courage and honesty to be able to admit to oneself (let alone others) that you’d made a mistake so big and stupid that you’re now dying horribly and essentially alone from it. Many people – particularly people who consider themselves clever or a bit better than everyone else – don’t report when they’ve been conned. It’s embarrassing. Particularly if you’d been manipulated in such a way that your entire family had been alienated, your bank accounts have been drained, or you’ve fallen prey to thinking someone is your friend or cares about you when they just wanted your money and are actually killing you (and if your healer is actually a genuinely caring person, it becomes even harder for people to accept). People are afraid of death and pain, CAM cancer quacks and con artists exploit this to the max (by pretending surgery and chemo don’t work, by lying about CAM treatments, by creating conflict in families and isolating the sick person from people who advocate for EBM, etc). I suspect most people who die due to faith based beliefs go to their grave clinging to their faith. After all, it’s often all they’ve got left if they’ve alienated family and friends. And if they’ve based their choices on repercussions in the “afterlife”, they’re perhaps not even that invested or attached to this life to begin with (a lot of people who invest heavily in faith seem to not think much of life and the world, but rather see being alive as a punishment and prelude to something better later).

  21. Harriet Hall says:

    pec said,

    “You are implying that you now have reliable cures for breast cancer. But I had heard that you don’t.”

    This is dishonest of pec. There was a whole discussion with pec and others in another thread where the information about cancer survival rates was thoroughly discussed. pec may “have heard” that we don’t have reliable cures, but she also “has heard” that we do. She is choosing to hear the myth and not the truth.

  22. Fifi says:

    Or perhaps pec really just can’t actually integrate/hear any information that contradicts her faith? After all, she’s got a lot invested in her beliefs about both doctors and CAM. For instance, she blames doctors for not actively forcing people to lead healthy lifestyles (apparently it’s medicine’s fault that pec now has to look after her mother who apparently didn’t eat well or exercise, and that pec herself didn’t encourage to adopt a healthy lifestyle). I think pec’s omnipresence on these boards – despite having no actual interest in EBM – speaks to her dedication to promoting CAM and investment in demonizing medicine. Of course, she could also be protecting and promoting her or her employer’s commercial interests.

  23. Joe says:

    David, I appreciate this insiteful post. Alienating a patient, in any way, cannot be a good thing. The fact that the patient returned shows the doctor did his best.

    My, local NPR station (WAMC, Albany, NY) is run by a hypochondriac and has many shows revolving around health. And quackery is welcome. I tried to get the “Health Show” to feature reports critical of CAM. The producer labeled me an “anti CAM lunatic.”

    Then, I tried to get “How to Save Your Life” (hosted by a neurosurgeon, Phillip Stieg) to feature a piece critical of naturopathy. He never had the courtesy to respond. Later, he opined that winter depression is caused, in part, by the fact that we don’t sweat out toxins in cold weather. (What is it about the egnorance of NY neurosurgeons?)

    Then, a show featured a natuopath’s take on cancer prevention. I was formulating a response to the MD who moderates the show, when she aired another show featuring an ND. Resistance is futile.

    BTW, if they don’t remember, I appreciated assistance from Dr.s Atwood, Hall and Gorski over the years.

    Anyway, my sister always admonished me that you catch more flies with honey that with vinegar.

  24. vinny says:

    There might be some benefit to having licensed naturopaths in this situation. If this patient went to the naturopath and was not urged to seek regular medical help at every visit, then that naturopaths’ license should be revoked and this patient’s family should sue this naturopath for gross negligence. Call me crazy, but I actually think there might be an advantage to regulating naturopaths through state licensing.

  25. overshoot says:

    It’s about never closing the door for the patient to come back if she changes her mind.

    Which is why, IMHO, it’s important to establish a “This is what I advise you to do, but whatever you decide please come back every <insert regular interval> to monitor progress and discuss how you’re doing” relationship.

    Who knows? Maybe if the patient had been confronted with a nonjudgmental record of how her disease was progressing she would have found it harder to back herself into the corner she did.

  26. pec says:

    “The long term survival rate for properly treated stage I breast cancer like the one this patient had is over 93%. That’s pretty reliable, in my book.”

    But we have never resolved certain questions such as over-diagnosis and lead-time bias. Most patients with her early diagnosis would never have progressed to fatal cancer, and her cancer might have progressed even with standard treatment.

    So we are back to that unsolved problem again. You can insist all you want that you cure 93% of these cases but you know how misleading that is.

  27. Joe says:

    Vinny,

    You are mistaken about public benefit. Licensure protects quacks from criminal prosecution. If they practice within “the standard of care” as defined by their quack associates, they cannot be held accountable.

    Then, one is left to argue the “preponderance of evidence” before an unsophisticated jury in a civil case. What to you, and me, is clear is actually cloudy for the general public.

    Experience does not show any advantage to licensure. Licensed chiropractors needlessly kill people (think, stroke) with impunity. You are not crazy; just a bit misinformed.

  28. vinny says:

    pec,
    “Most patients with her early diagnosis would never have progressed to fatal cancer”

    Most people with your astute interpretative skills would not progress past a 5th grade education. Why do you bring up such nonsense? I suspect “pec” might be another nick used by the creepy character known as antivax.

  29. vinny says:

    Pec,

    The correct statement would be: With standard medical treatment, most people (93%) would not have progressed to fatal cancer.

    You think that this would be the outcome without medical therapy and you are DEAD wrong.

  30. vinny says:

    Joe, I might be interested to find what actually occurs in states where naturopaths are licensed and patients seeking their care have visible cancer such as this patient. There are laws about offering quack cancer therapies.

  31. Joe says:

    Vinny,

    The authority on this is our own Dr. Atwood. http://www.naturowatch.org and more. It is difficult to glean information on this topic (cancer and other mistreatment) because there are no standards for reporting. In addition, there are disputes among NDs concerning who really qualifies as an ND.

  32. pec says:

    Well Vinny even Gorski will tell you that most early stage cancer or pre-cancer never would progress, with or without treatment. So the public has been misled into thinking there are reliable cures for cancer, as long as it is diagnosed early.

    But early diagnosis results in many early cancers or pre-cancers being found that would never have bothered the patient if left alone.

    Yes it’s possible that some early cancer that would have progressed is cured by the standard treatments. But nothing like what has been implied.

    Maybe 93% of the diagnosed and treated early cancers are “cured,” or at least do not recur within a specified time, such as 5 years. But how many would have progressed without any treatment? Certainly not 100%.

    After correcting for this sort of thing, you wind up with a very small probable success rate for the standard treatments.

  33. Harriet Hall says:

    pec,

    I am really disgusted with your comments. You continue to offer misinformation even after you have been shown why it is wrong. All this has been covered before. And none of it has anything to do with this patient. Her cancer DID progress.

    The tumor board was a group of specialists who knew all about things like lead time bias and who knew what the statistics are and what they really mean. Even if you want to quibble about whether the 93% was accurate, you can’t deny that there was an excellent chance that early surgery would have cured this woman’s cancer.

    You are quick to criticize, but you don’t offer any suggestions. If you have anything better to offer breast cancer patients than modern scientific medicine, please tell us.

    What do you think this woman should have done when she was diagnosed?

  34. weing says:

    Harriet,
    Isn’t it obvious? She should have had chiropractic manipulation or yoga and she would have been cured. Wait a darned minute. Pec, were you the alternative healer for this patient?

  35. David Gorski says:

    Well Vinny even Gorski will tell you that most early stage cancer or pre-cancer never would progress, with or without treatment

    Don’t put words in my mouth (or blog) that I didn’t say. It’s incredibly annoying, and you do it over and over and over again, even after you have been corrected over and over and over by me and others. You clearly misunderstood my early post. (Big surprise.)

    The very early stage cancers to which I referred were very tiny, many of them microscopic or at most a few millimeters of preinvasive cells. They were a lot less than 1 cm in diameter, and most of them were not already invasive (i.e., they were DCIS). For such tiny, preinvasive tumors it is true that many will probably not progress. The problem is that we don’t know which ones will and will not progress, which can lead to overtreatment. Moreover, in young women, there is a tendency towards more aggressive tumors; it would be folly and insanity not to treat a 1 cm tumor in a young woman.

    However, we do have a pretty good idea that most 1 cm frank cancers will indeed progress. The rate of progression is highly variable, but most will progress–especially if they are large enough to present as a palpable lump, as was the case with this woman. Indeed, we even have a study that shows how long it takes 1 cm tumors to progress to 2 cm. Granted, this study involved older, postmenopausal women; so slower-growing tumors were more common, but it does give an idea.

  36. pec says:

    “we do have a pretty good idea that most 1 cm frank cancers will indeed progress”

    And what percent of those are completely cured?

  37. Fifi says:

    pec – So your argument against treating cancer with EBM is that it’s not a 100% “complete cure” rate? And you’re making this argument after reading about how a woman died because she refused EB medical treatment precisely because she believed people like you who spread lies about EBM cancer treatments as a means to promote the kinds of toxic or useless “alternative” treatments that resulted in the progression of her cancer to the point where it is/will be fatal?

  38. David,

    I appreciate the point of this tragic story, and I agree with your perspective completely—including the issue about talking with patients, my previous, frustration-born statement nothwithstanding. I especially agree with your point about the hubris of the oncologist seeming to think that she should be able to convince any patient. I have sensed that same hubris among some physicians, and have begun to wonder if it has something to do with why they have become so tolerant of quackery recently. A patronizing stance, perhaps…”(well, ha ha, this person isn’t too bright, but I’ll just humor her about the woo and take care of business myself…)”? Something else (see below)?

    I agree with others who decry medicine’s general tolerance of quackery as one of the problems here, and with Harriet’s point that we, as a society, fail to teach science adequately. I agree, as I’ve written here before, that the best we can so is to “lead a horse to water.” See: http://www.sciencebasedmedicine.org/?p=97#comment-3018

    Having said all that, I still think that there’s room for some debate about how to approach individuals. In the comment linked above, I asked Peter Moran, a thoughtful surgeon with whom I mostly agree about such things, the following:

    “why denigrate our hard-won expertise and professionalism by calling it “a high-handed, ‘we know best’ stance and arcane argument from plausibility”? Would you say the same about a lawyer, a commercial airline pilot, an accountant, a civil engineer, an astronaut, or many other experts whose knowledge necessarily includes much that is technical, esoteric, complex, and difficult for even smart, educated people to understand without specific training? [etc.] ”

    He replied: “No, because quackery only flourishes in medicine. Only there do do useless methods seem to work well enough to mislead a lot of intelligent and vocal people. [etc.]”

    I thought about responding to that at the time but didn’t, and now seems to present another opportunity. Yes, it’s true that few people would pay for a ticket on a flying carpet, but it’s not true that few people get scammed by con artists other than quacks. A common scam is the get-rich-quick scheme aimed at retirees; there are frequent stories about the elderly losing their entire “nest eggs” to scams. How should a lawyer or an accountant respond to a retiree asking his opinion about such a prospect(us)? I would fully expect such a professional to tell my mother, if she were to ask, that the proposal is a “scam.” Anything less would be a failure of legal or accounting ethics. I’d be especially angry if, after any equivocating by that professional, my mother ended up being sucked into the scam—which, of course, could be every bit as injurious as quackery.

    My point is that I’ll bet most of us would expect a lawyer or an accountant to call a scam a scam, assuming that it were identifiable as such. Why, then, don’t we expect the same of MDs? Hubris, maybe? Could it be that such hard-ass truth-telling seems too crude for us god-like physicians? Or could it be that many physicians, in what has become the norm for liberals in the US at least, feel so guilty about everything that they don’t think that they have the right to call a scam a scam?

    I don’t pretend to know the answers, but the questions need asking. A couple of other thoughts: there’s usually a difference between putting down someone’s religion and putting down someone’s woo, Christian Science being an exception. Nevertheless, I’d have no trouble telling Christian Scientists that their religion is nonsense (“dangerous nonsense” is probably how I’d put it), I’d just not do it in the context of the doctor-patient relationship. (Not that there would likely be one…) Religions, as Sam Harris and Richard Dawkins and others have been arguing lately, have no legitimate claim to protection from reasoned inquiry.

    Second thought: I imagine Vinny had his tongue in his cheek when he suggested a possible “benefit to having licensed naturopaths in this situation,” but check out this article for a similar, albeit contrived, example: http://www.annals.org/cgi/reprint/137/8/660 An example of “bait and switch,” if you ask me.

  39. DBonez says:

    I can’t help but think of the woman in this post and when her death ultimately arrives, Science-Based Medicine will still take the hit for letting her die. Whether rushed to the ER or wasting away on hospice, her death certificate will not read vitamin deficiency or disruption of vital energies and be signed by an ND. No, most likely it will have a science-based cause of death and will have an MD’s signature on it.

    There is one industry, other than medicine, absolutely plagued with woo and it amounts to hundreds-of-millions, if not billions of dollars wasted on ridiculous beliefs and stupidity. It’s high-end audio and audiophiles. It’s an industry grotesquely filled with equipment, terms, publications, and trade shows dedicated to claims and “knowledge” that is not only unprovable, but has regularly been deconstructed by double-blind listening tests. Fortunately, it is financed by the rich, ignorant, and self-righteous and not by insurance companies or tax dollars. Despite information being available to the contrary, the woo portion of the industry is so profit-heavy they proliferate every avenue of consumer electronics and continue to thrive.

    Check out: http://www.randi.org/jr/2007-09/092807reply.html#i4 or http://users.cwnet.com/kant/myths.htm There’s lots more just a Google search away.

    At least when someone with more money than brains buys a $25K amplifier, or spends $12,000 on speaker cables, or $485 on a wooden knob ( http://www.museumofhoaxes.com/hoax/weblog/comments/4309/ ), people don’t get hurt.

    Hydrogen powered cars, fuel saving magnets, and air intake “tornado” devices are pretty woo’ish, but still, no human lives at risk.

    It sure does point to a non-scientific and gullible population quick to dismiss the old cliché “if it sounds too good to be true. . .”

  40. pec says:

    This is what I said Fifi:

    “Maybe 93% of the diagnosed and treated early cancers are “cured,” or at least do not recur within a specified time, such as 5 years. But how many would have progressed without any treatment? Certainly not 100%.”

    Not at all what you thought I said.

    And no one here at SBM has ever been able to provide an answer.

    If 93% of early-diagnosed patients survive with standard treatment, we cannot assume they would have all died without it. Let’s say half would have died without it — then the cure rate would be 47%, not 93%! Get it? But we can’t assume half would have died without treatment.

    How can we know what the cure rate is? Either the SBM bloggers are keeping it a secret or they just don’t know.

    The cure rate for this type of cancer when diagnosed early is somewhere between 0% and 93%. Well that’s useful information, isn’t it?

  41. Becky says:

    In the three years that I worked as an oncology nurse I saw three patients who chose no treatment disguised as alternative treatment. All three of them continued to believe in their choice until they died. One patient sent blood samples to some guy in Greece and he sent back herbal supplements and diet requirements (lots of grapes, for some reason). Another was actually “treated” by an MD with vitamin shots and coffee enemas. The third took vitamins and a vegetarian diet (I guess cancers are obligate carnivores). What I didn’t understand in any of the cases was why their families, who brought them to the hospital when they were unable to refuse in the late stages, did not sue these “alternative” quacks. Their loved ones lives had been stolen from them and they didn’t sue. If it had been an oncologist whose recommended treatment didn’t work as they expected it to, there would have been suits and threats of suits. But not with the quacks. The only thing I guess I can learn from that is that “bedside manner” has a lot to do with it. Otherwise I am clueless.

  42. Mark Crislip says:

    I would estimate the cure rate with alt therapies to be between 0% and 0%.

    It is like the case that got me interested in quackery, a 20 something female with an osteosarcoma of the leg that instead of amputation opted for naturopathic therapy. I saw her just before she died as he entire leg was necrotic and infected with mixed synergistic gangrene. She refused therapy as she wanted her naturopath to treat her (The only reason she was in the hospital was she passed out from bleeding out of her leg). She was convinced she could still be cured. You get to see many wasted lives in medicine, but this was one of the more tragic.

    I mostly see those who refuse HAART for AIDS in favor of alt therapies ad it breaks my heart to see another pointless death.

    I still do not know how to respond to these sorts of cases, and in the end we are responsible for our own destiny. I think its the 6th amendment to the constitution that enshrines out inalienable right to be stupid. I occasionally get to practice it in the blog.

  43. David, can you give us some more background on this woman? We can’t decide whether the system failed her unless we assess whether any known systemic deficiencies contributed to her bad decision.

    For example, what was her ethnic, cultural, and socioeconomic background? I’m not being a relativist here. Obviously, she was wrong and her doctors were right.

    My question is whether her doctors took stock of the ways in which her background might have been influencing her decisions. Why was she so reluctant to have surgery? Did she simply believe it unnecessary because she had such great alternative medicine, or was her reticence based on some further misgivings or misconceptions about medicine? For example, did she have insurance? Did she trust her husband to watch the kids if she had to go to the hospital?

    Did her doctors seek input from other professionals, e.g. social workers, health educators, or nurses when deciding how they were going to go about convincing the patient to comply with treatment.

    If her medical team explored all options and still couldn’t reach her, then it wasn’t the system or the doctors. Even the best efforts won’t succeed 100% of the time.

  44. daedalus2u says:

    There was a case where a woman wanted a VBAC and had a large baby (8 lbs 2 weeks before birth and 10+ at delivery), and the OB said no, so she opted for a home birth with predictable results.

    The child was brain damaged at birth, the midwife who did the home birth didn’t have insurance, so guess who was sued?

    You guessed it, the OB who said a VBAC was too dangerous.

    http://homebirthdebate.blogspot.com/2008/01/23-million-lawsuit-alleging-doctor.html

    The jury did find the OB was not at fault.

  45. HCN says:

    pec said “The cure rate for this type of cancer when diagnosed early is somewhere between 0% and 93%. Well that’s useful information, isn’t it?”

    Actually, the cure rate is about 93%, with a about a 7% chance of failure.

    So tell us, what would have been your advice to this woman? What sure fire cure would have actually worked at the vaulted 100% rate?

    Dr. Gorski wrote “In the interim, she had tried Essiac tea, homeopathy, Hoxsey therapy, the Gerson treatment, and Reiki therapy,”…

    Tell us, pec, what are the documented cure rates for:

    Essiac tea?
    homeopathy?
    Hoxsey therapy?
    Gerson treatment?
    Reiki therapy?

    Show us where it is recorded and documented, we really want to know what would have been a better way to treat this woman.

  46. Fifi says:

    pec, you didn’t answer the question. So is your argument against treating cancer with EBM is that it’s not a 100% “complete cure” rate?

    Do you think that people should do nothing if they’re diagnosed with cancer? Or do you believe they should opt for CAM methods like the woman discussed in this blog did?

  47. pec says:

    “So is your argument against treating cancer with EBM is that it’s not a 100% “complete cure” rate?”

    Well I guess you are not going to get it are you? I said the cure rate is unknown. That doesn’t mean I think homeopathy or something else is better. But this post strongly suggests that the standard treatments are evidence-based and reliable, and that we know how often they work.

    If I am skeptical about one something, why do you conclude that I am selling some other thing?

    When Gorski says his cure rate is 93% he probably means that 93% of the patients he treats for this type of cancer survive at least 5 years. He doesn’t know how many would have survived that long without his treatment. And he is not telling us how many survive 5 years but have a later recurrence.

    It sounds good to say 93% are cured. It sounds like mainstream medicine really is making progress towards curing cancer.

    But we know from other sources that very little progress has been made. Cure rates for early cancer have risen, but we don’t know if those rates reflect real cures or just over-diagnosis and lead-time bias.

    I don’t think you are going to comprehend this Fifi so just continue rejoicing about the wonderful progress in the war on cancer.

  48. RickK101 says:

    Pec – we actually do understand lead-time bias, and understand your argument that it is possible that science has not progressed at all in the fight against cancer. There is quite a large amount of solid evidence to the contrary, and whatever you may present, there is no better hope for a complete cure for cancer than the steady march of science. If you think there is, then please share it.

    I’m curious, if it was you after discovery of a PALPABLE mass, tell us, what would YOU do? Would you take the route this misguided patient took, which is to essentially do nothing, or would you undergo science-based treatment?

    Regarding this tragic story, I hope it is distributed in full graphic detail, pictures and all, to oncologists everywhere so they may present it to the next patient who opts for alternative therapies when faced with a similar challenge. Perhaps this poor woman’s plight can be used to knock some sense into others who’ve been misled by those trying to get rich by selling false hopes and death.

  49. Fifi says:

    pec – You routinely promote various sorts of CAM with absolutely no skepticism or evidence. I find it odd that you’re only critical about EBM and not things that claim to be medicine but have no evidence to support their healing claims. Technically that makes you cynical about EBM (meaning that you believe the worst) not a skeptic. Since you’ve shown no skepticism about CAM alongside your cynicism about EBM, it appears to be a faith based belief in CAM that you’re expressing. Cynicism and faith are two sides of the same coin, and neither are the currency of skepticism (a word you throw around but seem not to understand).

  50. oderb says:

    As tragic as the story is there is an assumption that the woman was treated irresponsibly by her ‘healers’. Yet there is no evidence that that is the case. It is possible that some – or all – of her healers urged her to seek medical care, and that the potions they suggested to her may have been described as adjunctive rather than curative. We just don’t know from the facts as presented here so we shouldn’t automatically condemn her healers.

    I see an energy healer regularly and he has several times urged me to see an M.D. when he has sensed a condition in my body that he said was beyond his powers to heal.

    I don’t write to persuade anyone that an energy healer can actually ‘see’ illness in the body (even though much to my continuing amazement this healer has been 100% correct in his diagnoses of my illnesses over a period of many years ) , only that healers can be as ethical as any M.D.

  51. weing says:

    Pec,
    So your problem is that you are upset that EBM dares to have a 93% cure rate for the stage of breast cancer this woman had when she was first diagnosed? EBM should not be making progress toward curing cancer because you are rooting for sCAM? This isn’t a baseball or football rivalry.

  52. weing says:

    oderb,
    You sound as if you are lucky. Have you given consideration to the possibility that your “energy healer” may be an excellent diagnostician and knows when there is nothing wrong with you and therefore his treatment works. When he realizes something is wrong with you, he refers you to an MD?

  53. Hermano says:

    I am told by a licensed ND that for whatever reasons certain individuals who have cancer refuse to follow conventional treatments and seek all sorts of alternatives.
    This ND refuses to treat anyone with cancer who is not already under care of an oncologist.
    Liability is one of the reasons for this.
    I personally know one person, who came to this ND seeking alternative cancer cures. The patient, a mother of 2 young children, refused the ND’s advice to follow her oncologist’s recommendations. She went to Mexico for some bizarre treatment, which included following an extreme diet, and took turn for worse after several weeks there. The patient panicked and called the ND from Mexico, was urged to return immediately to the States, to trust her MD, and to apply the same zeal in seeking alternative cures to following her oncologist’s orders.
    The woman THEN came back, underwent bone marrow treatment, and is dong well several years later.
    It makes sense that had an oncologist a patient sold on various alternative treatments, the MD might refer that patient to a licensed naturopath, who would assist the patient in following the oncologist’s protocols.

  54. durvit says:

    When he realizes something is wrong with you, he refers you to an MD?

    Weing, don’t knock it, as this <a href-”http://www.quackometer.net/blog/2008/07/alleged-victim-of-oxford-nutritionist.html”<ghastly case of a woman who was left brain damaged after a nutritionist advised her on a detox diet shows, knowing the limits of your competence is a very necessary and desirable quality.

  55. durvit says:

    Quackometer link.

    Apologies for html blunder.

  56. oderb says:

    weing,

    Your comment begs the question of how he knows what is or isn’t wrong with me. He is not medically trained, and even if he was he finds often conditions that are entirely asymptomatic.

    Interestingly he often seems to be better at diagnosis than healing (he has several times told me that I was developing a cold or flu when I felt fine. He was right, and he also couldn’t stop the flu from coming which he acknowledged was beyond his powers).

    He has told me that he helped save several peoples’ lives by sensing tumors before they were symptomatic and urging them to see a doctor asap. In each case a tumor was found. (His work apparently so impressed several M.D.’s that they now see him regularly themselves)

    How he can sense most illness is of course a mystery to me, but I am no longer a skeptic that he has a gift that is entirely beyond explanation by conventional science or medicine (and which I would love to see subjected to a RCT – something he has indicated he would eager to participate in.

  57. Harriet Hall says:

    oderb,

    You say your healer has a gift that is “entirely beyond explanation by conventional science or medicine.” Just because you can’t think of an explanation doesn’t mean it can’t be explained.

    Even if it can’t be “explained,” certainly it can be studied. If nothing else, you could learn things about it: whether it is consistent, whether it works for every patient, whether he can detect one kind of cancer better than another, etc.

    But the first step is to make sure the gift really exists. You may find it hard to accept, but it’s possible that both you and he are mistaken. Similar claims have been tested in the past and have been shot down.

    If he is willing to participate in a test, have him get in touch with the James Randi Educational Foundation as soon as possible. He stands to win a million dollars.

    Please do urge him to apply, because if he really has this abiility and can demonstrate it, it will revolutionize our understanding of the world.

  58. Harriet Hall says:

    pec,

    You are talking about lead time bias and other statistical problems. We understand that. But in the case discussed, the patient already had a growing cancer. If left untreated, what were the chances of it NOT killing her? I can’t give you an exact number, but we have a pretty good idea from historical comparisons that the chances of it NOT killing her were very small. The chances of a 5-year cure were 93%. The reason we use 5 years is that recurrences after that length of time are very rare.

    Please answer the question we have asked: what do you think the woman should have done?

  59. weing says:

    oderb,
    He may be a natural diagnostician, if such exist. More likely it’s a skill that has been honed in over time. He may not even be aware of how he does it. Just like a tennis pro or baseball pitcher may not be able to describe what they do. In fact, if they pay attention to their swing or throw, they get off their game.

  60. Joe says:

    weing,

    Or- the guy may just be guessing wildly. If you consider that an “energy healer” cannot treat anything, he should always send a person to a doctor for proper diagnosis and treatment.

  61. weing says:

    Joe,
    Confirmation bias is certainly possible.

  62. pec says:

    “You are talking about lead time bias and other statistical problems. We understand that.”

    So if you and Gorski understand that, why did he pretend there is a general 93% cure rate? This is exactly the kind of deception I have been concerned about.

  63. oderb says:

    Harriet,

    I appreciate your fair and open minded comments, and I will speak to him about the Randi Educational Foundation.

  64. weing says:

    pec,
    He did not pretend there is a 93% cure rate. There is no deception. 7% are not cured. Is it possible you are dealing with self-deception here?

  65. pec says:

    “He did not pretend there is a 93% cure rate. There is no deception. 7% are not cured.”

    What percent are cured weing?

  66. RickK101 says:

    pec

    Sorry, but I don’t understand what you are seeking?

    The quote was not “cure”, it was “93% long term survival”. I believe the definition of long term survival was 5 years, and there was the statement that there are few re-occurrences after 5 years. Obviously, cancer is not like chicken pox – you can get it again even if you’ve already had it once.

    Are you

    1) looking for a definition of “cure”?
    2) asking how many patients are “cured” given some agreed definition?
    3) suggesting that science-based medical cancer treatments provide no benefit, and that any perceived benefit is actually a statistical illusion?

    If you have an alternative suggestion for how this patient should have been advised/treated, could you please share it with us?

  67. daedalus2u says:

    “What else could explain her extreme inability to admit what was happening to her?

    What might explain it might be a variant of postpartum psychosis or puerperal psychosis. I see this as a very specific type of psychosis induced in women in the postpartum period to cope with metabolic stress. If she had 3 small children, then she was in the postpartum period.

    My explanation of postpartum psychosis is that it is a “feature” to shed an unsustainable metabolic load following pregnancy. If a mother cannot sustain the metabolic load to generate sufficient milk to sustain her infant until the infant is weaned, what were her options in “the wild”?

    The critical metabolic load that must be sustained in lactation is gluconeogenesis. Lactose in milk can only be made from glucose and from 3 carbon precursors. Fat only generates 2 and 4 carbon precursors. Fat can be used to make ketone bodies; it cannot be used to make glucose or lactose for lactation. When more glucose is needed than is being supplied by the diet, the body induces cachexia, which turns muscle into amino acids which then get turned into glucose in the liver. Often that glucose is used for glycolysis and is turned into lactate; the lactate then gets turned into fat to get rid of it. This is what happens in sepsis, muscle is lost and fat increases.

    Some tumors produce cachexia. If the tumor is producing agents that signal “the same” metabolic stress that triggers cachexia, those same triggers may also trigger postpartum psychosis in susceptible individuals. Such individuals may appear to be perfectly rational, and are “sane” in a legal sense (in that they are able to tell right from wrong). They may not have the ability to tell that their delusions are not reality.

    I blogged about metabolic stress induced postpartum psychosis in the context of infanticide, but it is long and some of it is quite disturbing.

    http://daedalus2u.blogspot.com/2007/08/low-nitric-oxide-acute-psychosis.html

    In this case, if there was an underlying metabolic stress that was causing psychosis or a sub-clinical delusional state, fixing that metabolic stress might allow the psychosis to resolve enough for her to appreciate treatment would be effective and is her best option. According to my low NO hypothesis of everything, what brings on this type of metabolic stress is insufficient mitochondria in the liver and peripheral tissues, one way to increase that is by increasing NO levels. Increased NO via the placebo effect is the only mechanism by which CAM stuff has any effects. If she did have low NO, getting placebo treatments that raised her NO levels may have been helping her metabolic stress so she “felt” better, but not her tumor so it continued to progress. If the tumor is deriving ATP from mitochondria, NO might accelerate its growth. If it is getting it from glycolysis, it might not.

  68. David Gorski says:

    David, can you give us some more background on this woman? We can’t decide whether the system failed her unless we assess whether any known systemic deficiencies contributed to her bad decision.

    For example, what was her ethnic, cultural, and socioeconomic background? I’m not being a relativist here. Obviously, she was wrong and her doctors were right.

    I only know what was presented. The woman was Caucasian and upper middle class. That her husband stuck with her as long as he did before deciding to divorce argues that he was probably devoted, but it’s not definitive evidence. The hospital at which the tumor board took place had an excellent department of social work; so I’d find it hard to believe that they didn’t at least try to get social work involved. I wish I could tell you more, but tumor boards usually don’t go into enough detail to learn all that information, and, as I pointed out, it was somewhere around three years ago.

  69. David Gorski says:

    So if you and Gorski understand that, why did he pretend there is a general 93% cure rate? This is exactly the kind of deception I have been concerned about.

    pec, I tire of your B.S. I really do. Commenters here, including myself, have been exceedingly and admirably patient with you, arguably far more patient than is warranted, and the concept of how we determine efficacy of therapy has been explained to you time and time and time again. Yet you keep regurgitating the same nonsense, completely undeterred, while accusing people of “deception.” There comes a point when it is clear that you are ineducable, and I think you’ve passed that point.

    Did I say “93% cure rate”? No, I said a 93% rate of long-term survival, slightly lower for ten year survival. That’s what cancer surgeons and oncologists use. We rarely use the word “cure.” Breast cancer can still come back as long as 20 years later or more, but the chances become increasingly low with the passage of time.

    What we are really looking at with this unfortunate woman is the natural history of untreated breast cancer. For that we do have data, mostly from the era before the days of mass screening programs. For example:

    http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1925646

    http://www3.interscience.wiley.com/journal/112679768/abstract?CRETRY=1&SRETRY=0

    In an earlier comment, I also cited a recent paper that shows the rate of growth of a 1-1.5 cm cancer.

    This is old data, but it shows what happens when breast cancer is left untreated. The reason the data is old is because untreated breast cancer is now, thankfully, a pretty rare phenomenon–but not rare enough, as this woman showed. Also remember, we are not talking about a tiny focus of preinvasive cancer (i.e., DCIS) in this woman.

  70. Fifi says:

    David Gorski – I, personally, am impressed by the patience that you and the other EBM bloggers have shown with your faithful pro-woo, anti-EBM cynics. Particularly since pec either can’t or won’t understand what is being written (my bet is it stars with can’t and ends with won’t try to understand, or she/he is just in the CAM biz) and keeps asserting falsehoods about what you have written. May I just say, though it may be tedious to keep explaining things to pec (particularly in light of her attempts to assert you’ve claimed something different than you have) but I suspect that it may actually be helpful to any readers on the fence or who have little understanding biology to see the facts laid out and explained in detail, as well as getting a glimpse into the inevitable results of wandering too far into the land of CAM. Personally I think it’s likely, based on the tactics used, that she (or he) makes a living out of CAM somehow and is mainly here as a disrupter.

    The reality is that a lot of people in the general public who use CAM believe that it’s based in science, it’s good for them to get a glimpse of the likes of pec and antivax. Some quite rational people get led down the garden path since they assume that there’s science at work and the pseudoscience mixed in with a few commonly known facts can have an internal logic that’s wrong but still cohesive (just like how novels and stories we tell ourselves have an internal logic even if they’re not based upon facts or in the real world). Having done yoga for quite a while, tried various CAM treatments and just knowing people into esoterica of various kinds, I can see how many people who don’t understand how their mind or body works can get sucked in….particularly if they’re having a health or emotional crisis of some kind and are vulnerable to persuasion and manipulation.

  71. pec says:

    “Did I say “93% cure rate”? No, I said a 93% rate of long-term survival”

    I don’t care if you call it “cure” or “long-term survival.” That is entirely irrelevant to my point.

    Ok I will use your terminology and see if you can understand me. You are claiming, or seeming to claim, that 93% of these patients survive long-term thanks to your treatments.

    You allow your readers to draw the seemingly obvious conclusion — that all or most of these patients would not have survived to 5 years, or whatever you define as long-term, without your treatments.

    But we know that what may appear to be cancer at the time of diagnosis often does not progress and the patient never dies from it.

    Any normal reader would interpret your statement as claiming a 93% success rate.

    I will try using an analogy and hope someone gets it. Let’s say I claim to have an effective treatment for the common cold. I’ll call it “MiraCold.” My advertisement says that 93% of patients who tried my remedy were free of cold symptoms one week later. Hurrah!

    But wait, say the skeptics, maybe some of those patients would have been free of cold symptoms a week later even WITHOUT MiraCold. Maybe MiraCold only really helped 10% of the patients, maybe even less. WE JUST DON’T KNOW how effective MiraCold might be.

    Ok, that was my point. I hope the analogy will help someone here get my point, because it is important. Cancer treatment statistics are at least partly an illusion.

    Thank you for your wonderful patience.

  72. weing says:

    Fifi,
    People with inadequate knowledge will make up stories that are internally consistent and confirmed by whatever pseudoscience is around. I recall, when as a teenager, I began having stabbing upper abdominal pain. It felt like someone was sticking a pin into a voodoo doll of me. That is what I thought as my body sensations were consistent with that theory. I began feeling weaker and looking pale. I could barely cross the street. I decided to see a physician and was immediately hospitalized for a bleeding ulcer and treated appropriately.

  73. Fifi says:

    weing – Exactly and this is why it’s so important to present people – not the faithful but the misled or misinformed – with the evidence and make clear the connections so people can draw their own conclusions. It’s the difference between propagandizing and educating – and it does people a service to show them the logical process and evidence so that they can learn how to think critically.

    Most of us are also pretty swayed by how we feel about something – even when it’s a subject that’s more about evidence than emotions.

    Glad you got that bleeding ulcer taken care of and didn’t feed your paranoia about supernatural attacks! Imagine if you’d gone to see an energy healer… There’s a self confirming loop in a lot of the CAM treatments that actually brushes off the worsening of symptoms as “detoxing” and I could see a similar loop happening with people who think they’re under “energetic” attack who go see a “healer”. As the symptoms got worse the client would start to believe that the attacks were getting worse and would seek the protection of the “healer” more and more and go to greater lengths to protect themselves using talismans, potions, aura cleansing and so on.

  74. Zetetic says:

    When people I encounter challenge survival rates like this, I like to use the analogy of the police officer with a “bullet-proof” vest. Yes, it won’t protect 100% but does that mean that he/she shouldn’t use it?

  75. Synaptix says:

    Pec, wow I think I just got stupider from your last post. Your MiraCold analogy is really really poor.

    First off you are equating an advertisement’s claim with decades of peer reviewed research. Done by people with a much deeper understanding of statistics than you. The cartoon version of science you set up is decidedly childish and overlooks the fact that all the questions you pose have been looked at exhaustively. This notion that cancer rates havent been corrected to account for those who might get better without treatment is straight up rediculous. You’d have to be extremely naive to think that researchers just deliberately overlook this simple concept.

    Secondly a skeptic doesn’t assume that the cold “cure” doesn’t work based on not knowing how it works. The skeptic looks at the claims, and compares these claims to the available evidence. If there is no clear evidence a skeptic will look at how plausible the cure would be based on our understanding of science. There is no dismissal based on ignorance, it’s based on the quality of the evidence and the probability the claims being made are plausible.

  76. Fifi says:

    pec – You’re still trying to pretend that a potential cancer (the ones that may or may not progress and are not definitively cancer yet) is the same as a cancer that has progressed to being an early stage, treatable cancer. Oh wait, no, you’re comparing cancer to the common cold and suggesting (by making that analogy) that cancer “clears up” without treatment in the same way that a cold does.

    It appears that you’re the one trying to mislead any readers of this blog and create false impressions.

  77. spurge says:

    pec refuses to answer the question yet again.

    What would you have had the Woman in question do?

    Put up or shut up.

  78. RickK101 says:

    Pec, you’re right, there is some of the 93% that would likely experience no further cancer growth even after a diagnosed, palpable malignancy. I don’t believe anyone said that the patient would have 0% chance of survival if not treated by real medicine.

    I sincerely hope you’re not asking science to prove what that percentage is. To do so would imply a study involving, among other things, a randomized control group who did not receive treatment. Obviously, such a study is morally reprehensible.

    So the ONLY morally acceptable course of action is to look at the high rate of fatality for untreated cancer demonstrated in the cited historical data, and continue working to move the 93% to 100%.

    But the truth of what Dr. Gorski and the doctors in the study said is completely unchanged. From that point in the cancer’s progression, the patient would have had 93% of enjoying a dramatically better life than she is now experiencing.

    Oh, by the way, the statement that we “don’t get it” is insulting. You are the only one introducing the “implication” into Dr. Gorski’s account, and then you’re criticizing the very implication you introduced.

    Finally, since the patient didn’t herself invent any of the alternative therapies she tried, those that promote those therapies and contributed to her belief in their efficacy now share responsibility for what happened to her.

  79. Harriet Hall says:

    pec,

    I’ll try one more time:

    Some early cancers may never progress. We have discussed how that can skew the statistics. But that doesn’t apply to this case. This patient did not have an early cancer. She had a large cancer that was already growing, and we have historical data to show that it almost certainly would have eventually killed her without treatment.

    We know that there was a 93% chance she would be alive in 5 years with appropriate treatment. We know there was a very small chance she would be alive in 5 years without treatment. I don’t know the exact numbers, but I imagine Dr. Gorski could dig up the numbers somewhere. Let me throw out an educated guess: maybe there is a 5% chance. I’m sure that’s not the exact number, but I doubt if it could be much higher than that. So you could say that of the 93/100 who are alive in 5 years, 5 of them would have been alive anyway. If only 88% survived due to treatment, does that change the recommendation to have surgery?

    You are correct that there is a subtle difference between saying “this treatment produces a 93% 5-year survival rate” and “this treatment will increase your 5-year survival rate from 5% to 93%.” You are wrong when you say we don’t know what the true success rate is. We do know. If we don’t succeed in communicating it properly to the patients, that’s another matter entirely.

  80. pec says:

    “suggesting (by making that analogy) that cancer “clears up” without treatment in the same way that a cold does.”

    Do some reading Fifi, and you will find out that yes, cancer is often destroyed or contained by the immune system. Even Dr. Gorski will tell you this. There are mainstream medical articles that will tell you this. For example, autopsies show that a very large percentage of people who died from something other than cancer, had what would have been diagnosed as cancer. But they never got sick from it. This is especially true in older people where even cancers that are progressing can grow extremely slowly. But it’s true for all of us — the immune system destroys cancer cells all the time, and even what it does not destroy is unlikely to cause disease.

    Never heard about this before? No, the medical industry would rather you don’t know, so they can take all the credit.

  81. Fifi says:

    spurge – I think pec is pretty desperate to distract from the original topic which does – even without visuals – give a very graphic illustration of what happens when people choose woo over EBM. I think it’s important to note that the patient in question didn’t do nothing, she actively pursued CAM treatments *instead* of EBM. It’s entirely possible that the treatments she pursued did worse than nothing and actually contributed to worsening her health.

    I actually had a conversation about reiki and cancer with a reiki practitioner once. (Putting aside belief in these things or not for a moment.) Since cancers are about unchecked growth – too much life energy! – many reiki practitioners believed that reiki should never be used on cancer. Apparently this belief has changed – which is not surprising since cancer and AIDS seem to send CAM practitioners and supplement manufactures into a feeding frenzy. I guess it’s pretty hard to sell woo for any illness that there are reliable, relatively comfortable. EBM treatments for so it’s always going to be the difficult, likely to be fatal kinds of diseases that get woo’s attention.

  82. pec says:

    “Some early cancers may never progress. We have discussed how that can skew the statistics. But that doesn’t apply to this case.”

    I was not talking about this case! I was talking about Gorski’s claim about a 93% success rate.

    Saying “some early cancers may never progress” is utterly misleading. MOST early cancers will never progress.

  83. weing says:

    Saying most early cancers will never progress is grossly misleading. Saying some early cancers will never progress is more accurate.

  84. overshoot says:

    In an earlier comment, I also cited a recent paper that shows the rate of growth of a 1-1.5 cm cancer.

    This is old data, but it shows what happens when breast cancer is left untreated. The reason the data is old is because untreated breast cancer is now, thankfully, a pretty rare phenomenon–but not rare enough, as this woman showed. Also remember, we are not talking about a tiny focus of preinvasive cancer (i.e., DCIS) in this woman.

    Since anecdote seems to count more in some circles than mountains of real data, I present a bit of family history:

    My mother lost her mother when she (my mother) was ten years old — to breast cancer. Original diagnosis was not much past the point described, but since at the time (1930s) the treatment options were limited, the odds were not in her favor.

    It took a long time, her illness (and its toll on her family) was not something that a young girl should have had to watch. I can see some of the consequences echoing into a fourth generation.

  85. Fifi says:

    pec – From my understanding, a cancer going into spontaneous remission or pre-cancerous cells not becoming cancer isn’t the same as a cold that resolves itself. Though I’m not an oncologist and claim no expertize about cancer so I’m open to any misunderstandings I have being clarified by one.

    The point is, making an analogy between cancer and the common cold is an attempt to paint them as being the same. And, of course, just one more way for you to avoid actually answering the questions about what you’d recommend regarding the case being discussed in this blog or what you would do yourself if diagnosed with cancer. You’re dancing fast but we can all see you still haven’t answered the question and are trying to divert the conversation from the CAM practitioners responsibility and contribution regarding the death of a woman they were treating. In this case, it wasn’t EBM treatments that failed her but the treatments she sought from CAM practitioners – who no doubt hold the same cynical, anti-EBM beliefs you do (as well as the same faith in CAM) and may have contributed to the progression of her illness.

    Now are you ever going to answer the questions you’ve been asked about what you believe should have been done in the case presented as the original topic?

  86. Calli Arcale says:

    pec sez:
    But we know that what may appear to be cancer at the time of diagnosis often does not progress and the patient never dies from it.

    Any normal reader would interpret your statement as claiming a 93% success rate.

    Not the usual audience here at SBM, I’d venture to guess. It’s mainly a skeptical crowd here, so we understand what he’s saying — he’s saying there is a 93% survival rate, which is the best that can be said. It is impossible to know how many of those would have survived anyway, because we never get to know what might have been.

    That said, without treatment, the survival rates are much lower than 93%, so while some of those 93% probably did not have an aggressive cancer, most of the probably did. That’s one of the fundamental challenges in medicine — trying to figure who really should get which treatment, given that you don’t know whose cancerous lump is bad and whose isn’t. The best that can be done is risk-benefit analyses.

    Have you ever left the house, and then driven back to make sure you really did lock the door? I have. Nearly every time, it was locked. Should I stop going back when I doubt myself? If I did, I might leave the door unlocked, and a burglar might gain entry to my house. That would be bad, so I keep going back, because really, going back isn’t such a big deal. The risk of leaving the house unlocked outweighs the cost of going back to check.

    Same thing with deciding who should get a lumpectomy or mastectomy. Does the risk of the tumor turning out to be aggressive outweigh the pain and suffering and surgical risks that will go along with the surgery? Sometimes it does, sometimes it doesn’t. The dilemma for oncologists and surgeons is that by the time you know it’s an aggressive tumor, it’s too late for surgery to have such a good survival rate. Inevitably, less aggressive (or even noncancerous) ones will be removed, which is unfortunate, but I think it’s generally worth it. Meanwhile, researchers are working hard to figure out better ways of deciding which tumors should receive which treatment — and which should be simply left alone. There’s some interesting genetic research in this area. But until they have a more reliable way of sorting the bad tumors from the not-so-bad tumors, there are going to be unnecessary surgeries. It is an imperfect world. The best medical science can strive for is continuous improvement.

  87. Harriet Hall says:

    pec said,

    “I was not talking about this case! I was talking about Gorski’s claim about a 93% success rate.”

    For crying out loud, pec, the 93% was specifically about this case. Read Dr. Gorski’s words again:
    “It was explained to her that a less than 1 cm tumor with no evidence of spread to the lymph nodes carried a highly favorable prognosis, with upwards of 93% long term survival with proper surgery and radiation therapy combined with adjuvant chemotherapy and/or hormonal therapy.”

    The 5-year survival rates for other types, sizes and stages of cancer are different from 93%.

    pec said,

    “Saying “some early cancers may never progress” is utterly misleading. MOST early cancers will never progress.”

    I suppose that might be true if you’re talking about the earliest stages where diagnosis is not yet possible. It is not true about diagnosable breast cancers. Some diagnosed breast cancers may never progress, but they are a minority, not a majority. We have done our best to explain that to you in another thread. There’s no point in repeating it here.

  88. daedalus2u says:

    I think pec is operating under the misconception that all “cancers” are the same. I am no expert in this, but my understanding is that there are at least hundreds of different types of cancers depending on the tissue compartment it develops in, depending on which gene(s) have been activated or deleted and depending on what growth factor(s) it is/is not susceptible too.

    The example given much earlier of people dying before their cancers have progressed was prostate cancer, not breast cancer.

  89. Fifi says:

    Just a little PR/propaganda perspective here…If pec can do some damage control for CAM by spreading a bit of doubt about the dangers of cancer – but lots of doubt about the efficacy of EBM cancer treatments – then I suspect she hopes to take attention away from the horrific case above and CAM’s contribution. If she can minimize the dangers of cancer and present it as being the same as the common cold, it’s easier to sell supplements and CAM since people think they’ve got time do experiment and there’s not a lot of danger. Cancer sufferers are one of the biggest target market for woo (apart from the worried well) so damage control is important – particularly when the case presented so clearly illustrates the fatal mistake and dangers inherent in choosing CAM over EBM treatments with a decent track record.

  90. pec says:

    Fifi,

    I used a simple analogy to help you understand lead-time bias and over-diagnosis. But unfortunately you don’t even understand what an analogy is! A sad example of the results of our education system.

  91. pec says:

    And I do not doubt the dangers of cancer! And I don’t know anything about any CAM treatments for cancer, and am certainly not promoting anything.

    My point is that we should be more afraid of cancer, not less. If someone gets a real case of it there is not much hope. Most Americans are blissfully unaware of this, and think the medical industry has come up with cures (or whatever you want to call a successful outcome).

    Cancerous cells do not equal the disease of cancer. Cancerous cells are often harmless, the disease is often fatal.

  92. spurge says:

    What exactly is a “real case of cancer” pec?

  93. Peter Hansen says:

    A tragedy. The good that may come from such a horrible case is the feeling amongst physicians and the public that “there ought to be a law..” It is lucky that the surgeon had a chance to see the outcome: most of the time they don’t. The oncologist doesn’t either. Folks like me get to. We in primary care see this more and more, but none so tragic.

    My patient, years ago, tried to treat her lung cancer with x-714. She was unmovable. Not by her husband, sons, family. I gave her good hospice care as much as I could. Not as tragic as a young mother, but tell that to the grandchildren.

    She had to order the treatment from Canada, since the “doctor” had been run out the US of A.

  94. Harriet Hall says:

    pec said,

    “If someone gets a real case of it there is not much hope.”

    (1) For some reason pec is in denial. We showed her irrefutable evidence that modern medical treatment has improved survival rates, and that many cancers are actually cured, and she refuses to listen.

    (2) Even when a cancer is incurable, there are effective palliative treatments, and there is always hope. Hope for a better quality of life as long as life lasts. See “The Anatomy of Hope” by Jerome Groopman.

    And she’s still not answering: what does she think the patient Dr. Gorski described have done?

  95. Fifi says:

    pec – Why would you want to spread fear about cancer and EB cancer treatments at the same time? People need to be informed so they can make informed decisions for themselves, not afraid of both cancer and EB treatments….unless of course the point is to make them look elsewhere for treatment….

    You seem to consider yourself an expert on cancer (I don’t and am quite open to being corrected when I’ve misunderstood something by someone who is an expert, though I’m skeptical of your expertize and understanding so that would mean an actual oncologist.). What are your credentials? What evidence do you base your ideas upon? So far you’ve offered nothing but assertions and in all the other threads you only ever offer personal anecdotes – what do you have to offer here? What’s your experience in studying and treating cancer? We know you dismiss EBM, so what ARE your ideas based upon?

  96. David Gorski says:

    I think pec is operating under the misconception that all “cancers” are the same. I am no expert in this, but my understanding is that there are at least hundreds of different types of cancers depending on the tissue compartment it develops in, depending on which gene(s) have been activated or deleted and depending on what growth factor(s) it is/is not susceptible too.

    Quite true. In fact, even cancers coming from the same organ and tissue type can have enormous variability. I cited a study in one of my comments above that showed that the doubling time of a 1 cm breast cancer in women between 50-69 years of age averages 1.7 years. However at the two extremes, it ranged from 1.2 months for 5% of women with the nastiest tumors to 6.7 years for the 5% of women with the most indolent tumors. This doubling time increases with age, implying that older women tend to get less aggressive tumors. Younger women (such as our patient above), it is known, tend to get more aggressive tumors.

    Indeed, the subclassification of breast cancers has progressed to the molecular level, with two major subtypes (luminal and basal), further subdivided into a total of five molecular classifications, with different characteristics, different behavior, and different sensitivities to various types of chemotherapies. Indeed, the Oncotype DX gene profile is an example of how we are now trying to overcome the problem of predicting who will progress and who will not, allowing us not to have to give chemotherapy to every woman when it will only benefit a minority. In other words, it’s how scientific medicine is trying to differentiate from tumors that have a low probability of metastasis (and therefore may not need chemotherapy) from those with a high probability of metastasis, for which chemotherapy is most beneficial.

  97. David Gorski says:

    My point is that we should be more afraid of cancer, not less. If someone gets a real case of it there is not much hope. Most Americans are blissfully unaware of this, and think the medical industry has come up with cures (or whatever you want to call a successful outcome).

    What do you mean by a “real” case of cancer? Please define it. From my perspective, by virtually any reasonable definition, the woman in this anecdote had a “real” case of cancer, but I suspect that you don’t use the same definition as we do.

    And why do you say there is not much hope? The amount of hope of a cure for an individual patient very much depends upon the type and stage of cancer the patient is diagnosed with. In the case of breast cancer, for instance, as long as it has not metastasized past the axillary lymph nodes, breast cancer, even locally advanced disease, is still potentially curable, although the likelihood of achieving long term survival decreases with increasing size of the tumor and increasing number of lymph nodes with cancer in them, among other factors. Pancreatic cancer, on the other hand, is horrible; only a minority of patients have potentially resectable disease when diagnosed, and even those who do and undergo successful surgery can only expect about a 30% chance of surviving five years. Going back to more favorable cancers, Hodgkins Disease is highly treatable with good results.

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