Respectful Insolence

(NOTE ADDED 12/7/2010: Kim Tinkham has died of what was almost certainly metastatic breast cancer. Also note that, when it was publicized on the Internet and on the blogosphere that Tinkham’s cancer gave every indication of having recurred and she was dying, her “practitioner” Robert O. Young removed the videos embedded below from YouTube.)

Remember Kim Tinkham?

She’s the woman who was diagnosed with Stage III breast cancer about three years ago. At the time, she became infamous because she showed up on Oprah Winfrey’s show, back when Oprah was in her “Secret” phase and proceeded to alarm even the ever woo-friendly Oprah by announcing that she wasn’t going to undergo any conventional therapy. Although the show was about The Secret, that magical, mystical belief that states that you can have anything you want if you want it badly enough, fortunately Tinkham didn’t choose just The Secret as her treatment. Unfortunately, she did find an pseudoscience-slinging practitioner of acid-base woo named Robert O. Young, who believes that viruses are “molecular acids,” that sepsis is not caused by bacteria, and that cancer cells are cells that have been “poisoned” by excess acid and the tumor a reaction to these “spoiled” cells. He took Ms. Tinkham under his treatment, a saga that that I updated about a year ago.

Longtime readers may remember that the part of Tinkham’s testimonial that I found most puzzling was where she said in an interview:

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

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

It’s rare to find a better example of denial out there, given that Robert O. Young believes that all disease is due to excess acid and that alkalinization is the answer to cancer and pretty much every other disease. Still, every now and then I wonder what’s happened to Kim Tinkham. For some reason, last night was one of those nights, and it didn’t take me long to find videos on YouTube:

Now that Ms. Tinkham appears to have been around for three years now, I wondered if I could find out what’s going on. One thing that she keeps repeating again and again is that she was diagnosed with “stage III” breast cancer. In the video above, Young nad his wife keep harping on that again and again. The three of them also complain again and again that there “weren’t any options.” Unfortunately, assuming the diagnosis and staging were correct, there really aren’t a lot of options. If the tumor is Stage IIIA, then there is the option of mastectomy and lymph node dissection (modified radical mastectomy) or, in the case of a woman with–there’s no way to put this very delicately–very large breasts, it might be possible to do a lumpectomy with removal of the axillary lymph nodes. Either way, afterward, chemotherapy and radiation would be indicated. If the tumor is Stage IIIB or IIIC, then surgery is not performed first. Rather chemotherapy is administered first in order to shrink the tumor. If there is adequate response, then a lumpectomy can be done; otherwise a mastectomy is performed, both usually with a removal of the axillary lymph nodes (although this is changing). Radiation then comes last. In all cases, if the tumor makes the estrogen receptor, then treatment is followed up with five years of Tamoxifen or an aromatase inhibitor, and if the tumor makes the HER2/neu oncogene, Herceptin is administered for a year.

Those, for the most part, are the choices, outside of unusual cases.

One thing I found interesting is how Young actually asked some reasonable questions at about the 4:00 mark. He asked if the tumor was aggressive, if it was hormone receptor positive (estrogen receptor positive, in other words). I’d ask the same questions, particularly whether the tumor is ER(+), because that would tell me the most. Some ER(+) tumors, after all, can be very indolent, even when they present fairly advanced. If her tumor were ER(-), I’d be a lot more worried that it is a fast-growing tumor. Then Tinkham said:

I remember them saying something about its being in situ, but, other than that…

Mystery solved. If this is true, then Kim Tinkham by definition did not have stage III breast cancer. Ductal carcinoma in situ (DCIS) is by definition cancerous cells in the ducts that have not yet invaded into the breast tissue. By definition, DCIS is considered stage 0 cancer and has a close to 100% five year survival. If Tinkham really did have DCIS, then it’s not at all surprising that she’s still doing well three years later.

In all fairness, I rather suspect that Tinkham actually did have invasive cancer. For one thing, DCIS is very commonly associated with invasive cancer. The two are frequently mixed together. It’s rather unusual (although not unheard of) for DCIS to grow large enough to appear to be a stage III cancer. It also sounds as though her surgeons wanted to remove all the lymph nodes under the arm, an operation called axillary dissection, which is virtually never done for just DCIS, only for invasive cancer. It is possible that, given her lack of detail regarding what kind of cancer she had, Tinkham might well have been confusing the sentinel lymph node biopsy, in which one or a handful of lymph nodes were are removed for testing, with a complete axillary dissection, where all the lymph nodes under the arm are removed, but she did sound as though the surgeons wanted to remove all the nodes, which they would only have recommended if she had cancer in at least one of her lymph nodes diagnosed preoperatively. Most stage III cancers require an axillary dissection, while tumors with clinically negative lymph nodes (i.e., lymph nodes that appear normal on physical examination, mammography, and ultrasound) are usually tested with sentinel lymph node biopsy. Sometimes for large DCIS, we do sentinel lymph node biopsies even though DCIS does not in general metastasize to the lymph nodes, because large DCIS lesions often harbor small foci of invasive breast cancer. You don’t want to miss evaluating the lymph nodes at the time of the original surgery, because if the surgery is a mastectomy you can’t go back later and do a sentinel lymph node biopsy. You have to go back and take all the nodes.

I realize all of that is probably more discussion than most readers want to read, but I did it because I want to emphasize that, if Tinkham’s doctors thought that, as seems likely now, she had a large mass of DCIS that probably harbored a small foci or two (or three) of invasive cancer, then her prognosis is very different than if she truly had a stage III cancer. I don’t know where Tinkham got stage III as her stage from, but it makes me wonder if she confused stage III with grade 3 breast cancer. I’ve seen it before, and Tinkham wouldn’t be the first woman with breast cancer to confuse the two. Again, Ms. Tinkham doesn’t seem particularly facile with medical terminology, because she repeatedly calls the proposed surgery a “partial radical mastectomy” when the most likely means a “modified radical mastectomy.” There is no such thing as a partial radical mastectomy.

One thing about Tinkham’s testimonial that did resonate with me is that she felt rushed. Sometimes we surgeons do that, whether inadvertently or intentionally. Personally, I try very hard not to rush my patients. In most cases I tell them that they have time to decide, that there’s no huge rush, although I would hope they wouldn’t take more than a month to make up their minds. There are exceptions, of course. Nasty cancers that are ER(-)/PR(-)/HER2(-), so-called “triple negative” disease. These tumors tend to be aggressive and fast growing; so I don’t want to fart around. I want to get these women treated. But even for these women, except in uncommon cases, a week or two (or even three) probably won’t make a difference. If there’s one thing we physicians do that can drive cancer patients into the waiting arms of quacks, it’s to rush patients too much. True, there are tumors where time really does matter, but breast cancer is usually (but not always) a tumor for which the patient has the luxury of a fair amount of time to undergo treatment.

Not surprisingly, Tinkham did what Jenny McCarthy did, and attended the University of Google. As she says in her testimonial, she Googled everything having to do with breast cancer, and she repeats how personal choice is the big thing for her. Another thing that resonated with me is that Tinkham kept asking doctors what caused her breast cancer, her criterion apparently being that if someone could tell her what caused her breast cancer she would listen to that person. The problem with this question is not the question per se but not accepting the answer, namely that science, while it does know a lot about what causes cancer, can’t really say what caused any individual patient’s cancer. That’s the honest answer, and that’s what I tell patients every week when I’m in clinic: I don’t know what caused your cancer. I do know the sorts of things that cause or predispose to cancer, but I don’t know what caused yours. I also know how to treat your breast cancer, what the odds of success are, and what the potential complications are.

That’s honesty. It’s also humility in the face of biology that we only partially understand.

In constrast, it’s the quacks who “know” what causes cancer and lack the humility to admit the limits of their knowledge. Many of them focus on The One True Cause of Cancer, as Hulda Clark did when she declared a common liver fluke to be the cause of all cancer or when Robert O. Young declares that all cancer is caused by “excess acid,” which “spoils” cells and that the cancerous tumor is the body’s reaction to the cells “poisoned” by acid. In other words, quacks are all too often always in error, biologically speaking, but never in doubt. In their arrogance of ignorance, they exude the confidence that patients like Kim Tinkham seek and flock to answers that are simple, neat, and completely wrong.

Quacks like Robert O. Young.

In fact, Kim Tinkham made it explicit by saying that Young and his wife had told her what causes cancer by saying “there is no such thing as cancer.” Again, remember that Young thinks that cancer is the body’s reaction to cells “poisoned” by too much acid, and he really does say that there is no such thing as cancer. He even goes on and on about how acid being “deposited into the fatty tissues” and thereby causing cancer. From a scientific standpoint, it’s a laod of rubbish, pure pseudoscience without any good scientific evidence to back it up. But Young can assert his nonsense about tissue being due to acid “spoiling” tissues with utter sincerity. He looks completely convincing–if you don’t know anything about cancer biology, and most people don’t know much, if anything, about cancer biology. Give him a woman who is afraid, who wants concrete answers, and who has demonstrated that she is fairly clueless about breast cancer, and he can convince her that he has the answer and can cure her. The reason, it appears to me, is that Tinkham (and women like her) just want to believe that someone knows what’s wrong with them and how to fix it. Knowing how to fix it isn’t enough.

My guess is that Tinkham probably doesn’t have stage III cancer. There’s enough in her testimonial to cast doubt on whether she does, and, more importantly, her clinical course makes it unlikely that she does. True, it’s possible that she might have stage III breast cancer that happens to be very indolent. If that’s the case, she’s very lucky. She’s very lucky anyway even if she doesn’t have stage III cancer, because she clearly has disease that isn’t progressing or at least isn’t progressing very rapidly. The time she’s wasted “flushing herself out” with several liters a day and “alkalinizing” herself has probably not hurt her. I saw lots and lots of discussion of various dietary woo, but one thing I had a hard time finding was any objective evidence to support the contention that her tumor has actually shrunk or otherwise regressed. All she has is a live blood cell analysis, which is pure quackery and has no scientifically valid evidence whatsoever to support its use to diagnose or follow cancer. She also did some “conventional” cancer markers. Unfortunately, there are no good cancer markers for breast cancer that you can really rely on, particularly since we don’t know what Tinkham’s markers were. What I want to see is Ms. Tinkham’s mammogram. I want to see her ultrasound. I want to see her MRI. If the tumor’s still there, then all these other tests are meaningless.

And the tumor is still there. Tinkham says as much at the end of part 5 of the interview. She even says it’s hard like a rock. As a breast cancer surgeon, I can say that this doesn’t sound as though Young’s quackery did anything at all to it. Quelle surprise! Also not surprisingly, both Tinkham and Young claim that this remaining rock-hard tumor in her breast, which is still there three years later, is the “encapsulation” of the “spoiled cells.”

In the end, it’s hard to tell exactly what’s going on with Tinkham and her cancer. I have no objective evidence and no objective tests. All I have are secondhand reports, none of which give objective measurements of the tumor. We do know that Ms. Tinkham has undergone various useless tests. We do know that she is undergoing various other forms of quackery. We do know that her tumor is still there three years later, but we don’t know if it’s grown or regressed. We don’t even know if it’s something that can mimic breast cancer, like scarring or fat necrosis, although it probably was and is cancer. Most frustrating of all, we don’t know how much longer Tinkham has before her luck runs out and her tumor starts progressing. For all we know, it already has.

Comments

  1. #1 Rene Najera
    June 22, 2010

    Most frustrating of all, we don’t know how much longer Tinkham has before her luck runs out and her tumor starts progressing. For all we know, it already has.

    It has been my experience that there is no such thing as luck.

  2. #2 Left_Wing_Fox
    June 22, 2010

    It has been my experience that there is no such thing as luck.

    Perhaps, but “luck” rolls off the tongue better than “unknown factors of biochemical interaction between the patient and the tumor preventing the progression of the cancer”

  3. #3 Nick
    June 22, 2010

    This case is just natural selection at work.

  4. #4 cervantes
    June 22, 2010

    One notable feature of this case, which you describe but don’t try to interpret, is that her physicians evidently told her a great deal which she does not understand. She heard scraps of ideas and terminology, but has it all mixed up in her mind. She may not only have been rushed in the sense of feeling pressured to make a decision quickly, she was also rushed through an explanation of her diagnosis, prognosis and proposed plan of action with no serious effort to answer her questions or assure that she understood what they were telling her. And now you see the result.

    The practice of medicine is more than just slicing and dicing. A veterinarian can do that.

  5. #5 Dawn
    June 22, 2010

    @cervantes: I have to disagree with you here. You say “…she was also rushed through an explanation of her diagnosis, prognosis and proposed plan of action with no serious effort to answer her questions or assure that she understood what they were telling her. And now you see the result.”

    You don’t know that the doctors did any of that. The doctors may have spent a lot of time explaining things to her, and asked her if she understood, and she may have replied yes, even though she did not understand. Women (and I’m one of them) often are reluctant to admit they don’t understand health issues.

    Orac refers above to fat necrosis of the breast. This diagnosis,which was the cause of my first mammogram at age 30, sounds very scary. I was sure it was a form of breast cancer. The internet (which was very young at the time) had little information, the medical librarians I sought out found little that reassured me. Mammograms, ultrasounds, the possibility of needing a biopsy…even as a nurse with an OB/GYN focus, I was NOT understanding and retaining information, although I’m sure my doctors thought I was, since I said I understood.

    Now, many years later, there has been no change and it shows up on my regular mammograms. But those months were some of the scariest of my life (I had 2 very young children) and if I DID end up with a diagnosis of cancer, I’m not sure how I would have understood the information any more than I did – although I would have undergone conventional treatment over woo.

  6. #6 Cervantesq
    June 22, 2010

    The doctors may have spent a lot of time explaining things to her, and asked her if she understood, and she may have replied yes, even though she did not understand.

    You are likely correct — which would serve to prove my point. Doctors often do this — ask “Do you understand.” That is because they are not competent communicators. That is the most useless, pointless question that syntax can generate. Patients will almost always answer “Yes,” for two reasons: 1) They don’t want to appear stupid and 2) They very well may think they understand. If they understand incorrectly, how would they know it? They believe they understand.

    Physicians need to be trained in communication skills. When the task is to inform, asking “Do you understand?” is proof that they don’t have any.

    And in case you can’t figure it out, you need to ask people to repeat back to you, in their own words, how they understand and interpret what they have heard, and more important, what it means to them and how they process that information in making a decision. If they can’t do that, you aren’t done yet.

    Patient centered care and shared decision making don’t just happen. They depend on physicians’ commitment, attitudes, and skills. This woman’s physicians did not have what it takes.

  7. #7 Chris P
    June 22, 2010

    Just a quick aside for my own curiosity: would you say it’s safe to conclude that a patient’s hepC infection caused his liver cancer? Thanks!

  8. #8 Mu
    June 22, 2010

    Cervantesq, I think you’re a bit hard on the doctor trying to communicate. I have a master level employee who is an excellent communicator. You discuss stuff, he repeats his back in his own words, great. It took three years and a monumental disaster to realize that it was great communication skills without underlying understanding. He memorized stuff, and didn’t understand the basic concept underneath, and he fooled three PhDs for years with that.
    Especially nowadays in the age of google you have people that can tell you the difference between a stage II and III cancer, but have no idea what the words mean, the old adage of a little knowledge is more dangerous than none at all. It’s easier than ever before to fool a doctor into thinking you understand the problem, whether the patient thinks he truly does know or just wants to pretend greater understanding, knowing he can read it up again on WebMD.
    Maybe we need a pop quiz at the end of the examination to find out what the patient really understood.

  9. #9 Dawn
    June 22, 2010

    @cervantes: You may be right. But even repeating the information back (which I did quite well) doesn’t mean the patient really understands it.

    Cognatively, I understood my doctor when she told me what fat necrosis was, that I would not need any treatment, and that they would be monitoring me for a while to make sure that there was nothing else going on. I would have told you almost word for word what she had said, the ‘normal’ prognosis, that I was not going to need surgery or even a biopsy.

    Emotionally, I was certain that she was wrong, that I had breast cancer and was going to need a mastectomy. Even though, looking back now, dispassionately, I KNOW she told me everything clearly. Breast cancer is such an emotional issue that it took me years to accept that the doctor was right. I think it was the 3rd or 4th unchanged mammogram when I finally accepted what the doctor told me. I cannot blame the doctor. She communicated well but I don’t think anyone would have gotten through to me.

    The only difference is that since I had the medical background, I was willing to accept her decision to wait and see. If I had not had that background, I could have well gone woo, used some treatments and claimed my breast cancer was ‘cured’. Especially since I was doing research into pharmocognasy at the time. And yes, I DO have some abnormal tissue on palpation in my breast, I could readily turn myself into a Kim and pointed to this area as “proof” that I was “cured” of cancer, since it hasn’t changed in far more years than her 3.

  10. #10 Nescio
    June 22, 2010

    I think that Young is a good example of a dangerous combination of ignorance, arrogance and a charismatic personality that is all too common in CAM circles. I have spent a fair bit of time wading around in the mire of acidosis mythology and Young’s version in particular. Having worked in clinical biochemistry, I know a thing or two about acid-base homeostasis, and find it quite surreal to find people like Young boldly proclaiming weird ideas that I know from personal experience to be entirely and demonstrably wrong.

    One of the claims I have come across time and time again is that the pH or urine and saliva are somehow better measures of “body pH” than arterial blood pH. I wondered how they explain measurements of blood and tissue pH that show quite clearly that, unless we are very sick indeed, we have a arterial blood pH very close to 7.4, venous blood pH a little lower, and a tissue pH of very close to 7.0. If we are all “too acidic” through our diets and lifestyles, where precisely is all this excess acid? If it’s not in our blood or our tissues, where could it possibly be hidden?

    Young explains this conundrum by inventing a new science he calls the “New Biology” and a new syndrome (new to me anyway) called “latent tissue acidosis”. If that’s not arrogance I don’t know what is. Young also seems to have reclaimed some old and abandoned research into connective tissue, and claims that excess acids are stored in the connective tissues, in Pishinger’s spaces. He and his acolytes also write about an organ called SCHADE [sic], which is a “colloidal connective tissue organ” or “pre-kidney”.

    After a bit of digging around I found that back in 1927 a German scientist called Heinrich Schade (1876-1935) wrote about a colloidal substance in interstitial connective tissue, but his ideas were challenged by some research in 1948 that you can read about here if you are interested. It looks to me as if someone has read about the “colloidal connective tissue organ of Schade”, and understood it to mean that this tissue is actually called Schade.

    So as far as I can figure it out, the imaginary excess acid that causes the imaginary condition called “latent tissue acidosis” is stored in an imaginary part of the body called either “Pishinger’s space” or “Schade”. Clear as mud, I hope, though I would welcome any clarifications or corrections.

  11. #11 Nescio
    June 22, 2010

    One last thing – if you want a good example of how nonsense spreads like an STI through the internet, Google “Pishinger’s space”.

  12. #12 Jackie Fox
    June 22, 2010

    This is so sad. Shame on Robert O. Young and all the quacks like him. I wish we could channel that need to believe into belief in medicine and science. If only she could believe that DCIS has a virtual 100 percent cure rate with mastectomy (the choice I and others like me have made). I’m big on choice too, but it never occurred to me to choose quack pseudoscience (essentially wishful thinking).

    P.S. I don’t think your post was too much discussion. Far from it.

  13. #13 Jon H
    June 22, 2010

    ” and she repeats how personal choice is the big thing for her.”

    I suspect that when she googled, and saw lots of credible sites with similar information (suggesting the normal modes of treatment) she ended up feeling pushed into that course of action, so going for the woo outlier feels like “personal choice”.

  14. #14 Susan
    June 22, 2010

    As an active metastatic breast cancer patient I devoured your post. I have always prided myself on trusting “data” and “science”, until now as I am realizing how much we really don’t understand about cancer (causes, treatment, cures, etc). As I explore CAM for the first time I worry about becoming like KT, believing in something that makes no sense because I want so much to have hope in something else – something I can do! I still carefully evaluate what I read, BUT I simultaneously wonder if I am getting caught up in wishful thinking. For example,I’m am now looking into IV vitamin C therapy as promoted by Block Clinic (Life Over Cancer), also Cancer Tx Ctrs of America, and University of Kansas. Any feedback? (I’m still on conventional chemo.)

  15. #15 Denice Walter
    June 22, 2010

    Of course Young sounds *convincing*:his certainty is maintained by his solipcistically encapsulated knowledge base,hermetically sealed from information from the real world of studies,journals,practice, and university.What is most frightening to me is that this very certainty makes woo-providers attractive to terrified patients.Often,I’ve found that you can judge someone’s level of proficiency by the quality of their “gaffes”:(examples)stroke can be caused by “arterial”(sic) fibrillation;cooked food is “dead”; cancer is “white”;words like “amygdala”,”hippocampus”,”serotonin”are mispronounced or prove to be stumbling blocks for the “expert”.Ideas like these are not learned in any non-whimsy based classroom:they’re *original*!

  16. #16 Elaine Schattner, M.D.
    June 22, 2010

    I suspect we’ll be seeing a greater proportion of stage III and IV breast cancers in the years ahead. Unfortunately, many of those tumors will be detected in women who’ve followed their “conventional” doctors’ new wisdom to not undergo screening mammography.

  17. #17 Orac
    June 22, 2010

    Do we see a greater proportion of stage III and IV tumors in the U.K. or Europe? Or, more accurately, is the absolute incidence of stage III and IV tumors higher in the U.K. or Europe? (After all, screening mammography detects more DCIS and stage I tumors, so the relative percentage may well increase due to a decrease in DCIS detected.) After all, the new USPSTF staging recommendations are roughly the same as what is used in much of Europe. Do breast cancer patients do worse in Europe? Do more women die of breast cancer in Europe?

  18. #18 rork
    June 22, 2010

    “Not surprisingly, Tinkham did what Jenny McCarthy did, and attended the University of Google.”

    I would say that the internet CAN point the interested person with a bit of judgment to some very good sources of information on breast cancer. I’d go so far as to propose that without doing that, you aren’t going to be able to talk to your doc about things very well, unless they are spending entire days lecturing you. (Your doc may never-the-less do the right thing.) Certainly be careful of the woo out there though.

    On to lobbying real doctors:
    I found my mom’s docs horrible at explaining things – perhaps due to the assumption that “patient can’t understand these things”, and so ask this:
    What percentage of docs meet the patient with a copy of the latest pathology report already in their hands to give to patient?
    Tinkham may not have any.
    Maybe some people are frightened or feel inadequate if you push that at them, but I’ll think you are a jerk if you don’t. You can just say it might be hard to follow but patient should have it anyway. One might argue that they are too obscurely written, but if that is so, that can and should be fixed. Ask if this is this needed terseness, or just the cool-seeming shamanism of impenetrable jargon. Some “witch doctors” use dead or near-dead languages too.
    Hmm, perhaps it “wastes time” to deliver the path report, cause it may (rightly) provoke questions.

  19. #19 Dawn
    June 22, 2010

    @Denice Walter (15): then I am doomed.
    I stumble on words like that all the time…;-0

    I am a very visual person,who reads a lot (but I’m still a lousy speller. Explain that…) I have a hard time with words that really aren’t pronounced like they look. But, I can pronounce most of the medical words I use routinely since I have been corrected enough by others!

    But yeah, there are some “woo” alerts that always raise my radar. Dead food is definitely one of those. (My response is that I prefer my food dead. I’ve never been a fan of things that wiggled while I eat them – except for spaghetti and Twizzlers..)

    @Orac: IIRC, way back when you posted about the new mammogram recommendations, you pointed out that breast cancer diagnosis and survival rates were pretty similar between the US and Europe. So I suppose we will see more of later-diagnosed cancers with little or no change in the long-term surviver rate.

    (I’d look up the post but my dear employer has fubared the internet today and no one can do any searching for some reason. Unless I have a page bookmarked, I can’t get to it. IT says they don’t know – yet – what is wrong but “they are working on it”.)

  20. #20 T. Bruce McNeely
    June 22, 2010

    @rork and others:

    You may find the CAP Cancer Protocols helpful in understanding pathology reports. These are templates for standardizing reports of cancer specimens that are currently being adopted in the US and Canada. The complexity and information in these reports has increased greatly over the last 20 years, so that some form of organization was needed to improve communication with the clinicians.
    I can’t cut and past the URL (sorry), but Google CAP protocols. The first item listed is what I’m talking about.

  21. #21 Jojo
    June 22, 2010

    Susan, Here is a link to a post on Vitamin C and Cancer. http://www.sciencebasedmedicine.org/?p=5764#more-5764

  22. #22 Pablo
    June 22, 2010

    On of the most important things I learned by listening to Suzanne Sommers: folks like her would rather the doctor lie to you than tell you the honest truth. She actually criticized oncologists because they weren’t willing to tell her they could “cure” her cancer. Meanwhile, her book celebrates charletons who claim they can cure anyone’s cancer easily. Who cares if it is a bunch of BS, at least they claim to do it.

  23. #23 Sigivald
    June 22, 2010

    Chrisp: No.

    You could say it’s the most likely cause, maybe. Or the best guess.

    But to say outright that it was “the cause”? Not justifiable.

    It doesn’t cause liver cancer in everyone who has it, and other things can; thus it can’t be assumed to definitely be “the cause” in any specific cancer (at least not given the current level of understanding).

    (It is, after all, quite possible for someone to have Hep. C, and have had a liver cancer that started before infection.

    Or Hep. C, and a liver cancer caused by pure random chance of a cosmic ray hitting the wrong bit of DNA in a liver cell…)

  24. #24 Robert S.
    June 22, 2010

    @ Susan (14)
    As far as I understand the science. At best, IV vitamin C will correct for not getting enough vitamin C in your diet, as would a simple multivitamin, or correcting your diet. At worst (too much vitamin C) it could cause Iron/Copper imbalances, kidney stones, and make you feel generally crappy. As for treating cancer with it? Again, this is my personal knowledge of current research, but it’s bunk. At best its a powerful placebo (doctors office, invasive {but not too invasive}, lots of buzzwords) but as most medicines are tested against placebo we know that they work even better.

  25. #25 Richard
    June 22, 2010

    As far as retaining information that the doctor tells you in the exam room, I think the best idea is probably to bring a small voice recorder to the consultation – you just need to inform the doc that you want to record, which they’re generally fine with. It’s going to be almost impossible to remember everything that gets said, or the doctor’s explanation of why this drug is the one he’s prescribing, or this intervention is the right thing to do right now, but if you have a record of that conversation, and you listen to it later that day, then you can clear up a *lot* of your own misunderstandings.

    Second, it’s part of *our* job as patients to put a little effort into thinking of questions we might want to ask, before we’re actually in the consultation. Write them down, and pull them out when it’s time for the conversation. Sure, we’d all like to think that we can remember all the questions we want to ask, but when you’ve got one shot at a conversation (and the next appointment is in a few weeks), you need to make the most of it.

  26. #26 Dianne
    June 22, 2010

    I’m am now looking into IV vitamin C therapy as promoted by Block Clinic (Life Over Cancer), also Cancer Tx Ctrs of America, and University of Kansas. Any feedback?

    First rather snarky thought is that Linus Pauling, an early promoter of vitamin C for cancer, died of cancer. That doesn’t prove anything, of course, no cancer treatment works for every cancer or every person with cancer. However, it should tell you immediately that this isn’t a cure all.

    To the best of my knowledge, vitamin C has never been demonstrated to have any effect on cancer in clinical trials. There have been some interesting in vitro studies which might suggest an effect if the right dosage and timing could be found. So my recommendation would be not to use vitamin C outside of a clinical trial. If you are a candidate for a clinical trial at a reputable institute (which, as far as I know, U Kansas is), it might be worth considering. But outside that context in a situation where you’re just getting it and have no real idea whether it is working or nor, and if it is doing you harm or not, I would strongly discourage its use.

    I hope that’s helpful to you and not too confusing, wimpy, or discouraging. Best of luck to you!

  27. #27 Adam_Y
    June 22, 2010

    For example,I’m am now looking into IV vitamin C therapy as promoted by Block Clinic (Life Over Cancer), also Cancer Tx Ctrs of America, and University of Kansas. Any feedback? (I’m still on conventional chemo.)

    The proposed mechanism of how it would work involves the creation of hydrogen peroxide. Hydrogen peroxide is a nasty nasty chemical.

  28. #28 realinterrobang
    June 22, 2010

    Cervantes, did you really mean to insult veterinarians by saying “The practice of medicine is more than just slicing and dicing. A veterinarian can do that”? I just lost a cat to cancer in January, and the veterinarians I was taking him to were extremely kind, well-informed, good communicators (and I say this as someone with a master’s degree in rhetoric), and every bit as professional and competent as the best MDs I’ve encountered. Not only that, but I think every single person at the clinic who worked with my cat fell in love with him, but he was like that.

    So, please, that’s hardly just “slicing and dicing.” And cancer is nasty no matter whether it’s in animals or people. In some ways, cancer is worse for animals because you can’t even try to explain to them what’s wrong. They had to explain to me instead, and they did a fantastic job.

    After he died, I called them to say thank you; that’s how good they are.

  29. #29 DVMVal
    June 22, 2010

    Thanks, Interrobang – you beat me to the punch!
    I do a lot more than “slice n’ dice”, Cervantes, although I have to admit, I’m a pretty damned good surgeon…
    I was going to make a lame joke by talking about all the breath I’ve wasted over the years, explaining things to clients – but I’ve found what’s most effective is TELLING THEM WHAT NEEDS TO BE DONE (IMHO), & then deciding how they can afford it [if necessary].
    I could make a wall-sized collage of the thank-you cards & heartfelt letters I’ve received over the years, but quite frankly my ego doesn’t need the stroking.

  30. #30 Dianne
    June 22, 2010

    On of the most important things I learned by listening to Suzanne Sommers: folks like her would rather the doctor lie to you than tell you the honest truth.

    Sad but true. I’ve got one patient whose relative spends hours screaming at me for not telling him* I can cure this patient with metastatic renal cell carcinoma. This worries me for two reasons: 1. When the inevitable occurs it’ll be a nasty scene 2. This makes the pt, through his relative, vulnerable to any quack who comes through and claims that he can cure the patient. Of course, he can’t but he can take all their money then blame the patient for doing something wrong when he inevitably dies.

    Fortunately, most people aren’t like that and both can and want to comprehend reality.

    *Pronoun is used as “generic he” in this case for HIPAA purposes. Actual genders of individuals involved not guaranteed.

  31. #31 Doctor Smart
    June 22, 2010

    Well I sort of doubt if her breast cancer is due to excess acid and that alkalinization can do anything to help breast cancer.

    There is such a thing as acidosis which is when the body becomes overly acidic. This can cause a variety of problems including arthritis, migraines, insomnia, etc.

    There are some natural remedies to acidosis such as kelp, phosphorus, potassium, SAMe, elder bark, etc.

    Then again the body can become too alkaline which could cause hypertension, night cramps, sore muscles, etc.

    Again some natural things can help with alkalosis such as alfafa, Betaine hydrochloride, Coenzyme A, L- Cysteine, Methylsulfonylmethane (MSM), etc.

    Keeping the body’s ph balance is important, but I do not think it could cause cancer. I could be wrong. Mostly the immune system failing is the root cause of cancer while food/drinks/lifestyle and other factors contribute to the body’s ph balance.

  32. #32 Dr Smart
    June 22, 2010

    Dianne,

    Have you ever tried Cesium chloride on cancer patients? It is dangerous as it severely depletes calcium and potassium levels, but from all accounts I have heard, it works about half the time on “terminally ill” patients.

    Patients who are not terminally ill and in very early stages of cancer i would recommend trying graviola/cat’s claw with a number of other proven immune booster super antioxidants.

  33. #33 LC.
    June 22, 2010

    @DVMVal

    Well, I may as well pony up the lame joke then for Vets (shamelessly paraphrased/stolen from one of Terry Prattchets books) :).

    “Veterinarians are generally better than human doctors. If a human patient dies, the doctor can claim “It was his time, the will of the gods, we did all we could, etc”. A veterinarian however, may get a visit from very serious men in dark suits saying “The Godfather is most upset, and would like to know how his $10 million racehorse died in your care….”

  34. #34 Denice Walter
    June 22, 2010

    @ Dawn: The mis-pronouncer/malapropizer described is a self-proclaimed expert in nutrition, physio,and mental illness,with a (so-called) doctorate in public health.I’m sure, if you took a basic course and heard the prof and other students say the relevant words over and over *hundreds of times*(as is usually the case with common words like these),you wouldn’t have a problem. Thus, you aren’t “doomed”.*Au contraire*,self-critique is a good thing.I suspect that the failure to correctly pronounce common words points to never having taken a basic course( and other problems).Similarly, many of the critics of cancer treatment(Hi Mikey!)probably have a grasp of the subject that is largely based on confabulation and folk tale.

  35. #35 Helena Constantine
    June 23, 2010

    I’m responding here since its still possible to do so without registering.

    1. I am thoroughly convinced that you are not a pahrma-shill.

    2. I am equally convinced that you never took Latin. So let me tell you that the word opus, despite its deceptive -us ending, is not a second declension masculine noun. It is a rather rarer type of third declension neuter. Its plural is not in the second declension -i, but the counter-intuitive opera. Magnus is a first/second declension adjective, so its takes a neuter plural ending in -a. So the plural of magnum opus is not magnum opi, but rather manga opera.

  36. #36 sheldon101
    June 23, 2010

    re #35 and latin plurals.
    1. I don’t know where the plural of magnum opus was raised.
    2. I took latin for one year in high school. I primarily remember semper ubi sub ubi — advice that Lindsay Lohan might have been wise to follow.

    3. And then there’s –the joke— from “Rinse the Blood Off My Toga” which fits perfectly. You can read the text here and click on the video where it is about half-way through.
    http://www.uoguelph.ca/shakespeare/multimedia/video/rinse_the_blood.cfm

  37. #37 T. Bruce McNeely
    June 23, 2010

    So the plural of magnum opus is not magnum opi, but rather manga opera.

    A Japanese comic book set to music?

  38. #38 Chris
    June 23, 2010

    Helena, responding here as opposed to where else? Age of Autism? Natural News?

    Also, a note from someone who has followed this blog for a while: Orac hates grammar nazis. I would suggest that restrict your comments to the substance of article.

  39. #39 Pareidolius
    June 23, 2010

    Really Bruce, have you been living in a cave? Inoshiro Puccini’s magnificent Aida vs. the Beta Monster is one of my favorite Manga Operas.

  40. #40 Dianne
    June 23, 2010

    Have you ever tried Cesium chloride on cancer patients? It is dangerous as it severely depletes calcium and potassium levels, but from all accounts I have heard, it works about half the time on “terminally ill” patients.

    Number of clinical trials in Medline using cesium chloride: zero. Number of positive case reports: one, in 1984…for very low values of “positive”: over 50% of patients treated were dead within 2 months. Not great results, even for 1984. Not to mention that the article turns out to have been written by a person later convicted of practicing medicine without a license. Peer review: not perfect. Lots of reports of people dying, cancer unchanged, after taking cesium. Multiple animal studies have documented little to no effect of cesium on cancer. In summary, I think the title of this article sums it up best, if one removed the word “brain” from the title.

  41. #41 Dianne
    June 23, 2010

    I should add that cesium is an example of just the sort of “therapy” that I’m afraid the person I mentioned might fall for: sounds plausible, got a paper with impressive sounding results behind it (if you don’t look at them too closely)…I can easily see why someone with incurable cancer might think “why not”.

    The answer to “why not” is that “alternative medicine” is expensive and dangerous. Cesium can cause death due to torsades de pointes (a nasty heart rhythm problem) among other things. It’s also expensive. The patient in the letter linked to spent thousands of dollars on a “natural remedy” that did her no good and a good deal of harm, taking thousands of dollars she could have used on something she enjoyed and nearly taking the few months of life she had left.

  42. #42 Sauceress
    June 23, 2010

    Sane, paululum linguae Latinae dico.

    @Helena Constantine
    In dentibus anticis frustrum magnum spiniciae habes

    @sheldon101
    More importantly…Semper ubi sububi in caput tuum

    And just because it’s there…
    Scientia non habet inimicum nisp ignorantem

  43. #43 Roger Kulp
    June 23, 2010

    Let me say this for “The University of Google”.I think most doctors are far too critical,of the internet,and what it did to level the playing field for access to medical knowledge.Many feel threatened by it,brushes off everyone who uses the web,as a hypchondriac,or a crank.

    Years ago,I was diagnosed years ago,with autism, developmental delay,physical developmental disabilities,and learning disabilities.I also had a lifelong history of many other mysterious medical problems that no doctor could ever identify.Frequent infections, chronic pneumonia,seizures, heart problems,gastrointestinal disease,and severe “all over” body pain,I recently learned was systemic vasculitis. In short,I am much like the syndromes seen in the the “vaccine damaged” autistic children.I spent too many years fighting a hospital,that only offered me antidepressants, and antipsychotics as treatment.

    Last year,I went to see a pediatrician,who offered to give me a large battery of dozens of metabolic,genetic,and hematological tests that nobody ever saw fit to give me before.I was found to have a number of serious inborn errors of metabolism,severe anemia,and a partial chromosomal deletion,similar to one seen in DiGeorge Syndrome.

    What this doctor did,was hand me a printout of the test results,and sent me home to figure them out myself.The doctors I have seen since are not much better.Most doctors can only handle the most common conditions,be it type 2 diabetes,or an ingrown toenail.

    Those of us with unusual syndromes are often in the unfortunate position of educating our doctors.Aside from that,study after study has shown that too many doctors have not kept up with advances in medicine since they left medical school.I would encourage you to look into an emerging mode of care called participatory medicine.

    For every practitoner of quackery,and woo,there is an uncaring,and undereducated doctor who drove the patients to seek them out in the first place.

  44. #44 Calli Arcale
    June 23, 2010

    For what it’s worth (not much):

    There is a growing school of thought that when one is speaking English but using words adopted from Latin, one should generally use English pluralization rules, not Latin. Thus, the plural of “magnum opus” probably ought to be “magnum opuses” unless it is part of a Latin sentence. Of course, it is also considered acceptable to use Latin plurals, thus considering it a quotation from Latin rather than simply English use of a loan-word.

    But a more pertinent question would be what Helena Constantine is even talking about, as she is the first to use the phrase “magnum opus” in this entire thread.

  45. #45 James Sweet
    June 23, 2010

    Another thing that resonated with me is that Tinkham kept asking doctors what caused her breast cancer, her criterion apparently being that if someone could tell her what caused her breast cancer she would listen to that person.

    And herein lies the vulnerability which pretty much all widespread frauds on the human race have exploited. Whether it be medical quackery, religion, astrology, psychic mediums, or whatever, they would all fail to convince anyone if only we humans were just a little better at tolerating uncertainty.

    @Roger Kulp: I tend to agree that many here are too down on University of Google. If it weren’t for University of Google, my son probably wouldn’t be vaccinated right now… the majority of the anti-vax paranoia my wife got fed was via word of mouth, and all the antidote came from the internet… just sayin’…

  46. #46 James Sweet
    June 23, 2010

    Oh yeah, and one more thing about UofG… Similar to Roger Kulp’s tale, but on a much smaller scale, I can tell you that when I talked to my doctor about upping the dose of a maintenance medication I am on, I knew more about the risk profile than he did… It wouldn’t really have made a material difference if I hadn’t (he consulted his computer to find the maximum recommended dose and saw that what I was requesting was in line with that, so he would have said yes either way) but I feel better knowing that I made the decision with a full (or as full as possible) awareness of what level of risk I was incurring.

  47. #47 Dan Weber
    June 23, 2010

    For those wanting a solution to the mystery, Helena Constantine @35 is apparently referencing this old post:

    http://scienceblogs.com/insolence/2008/10/vitamin_c_and_cancer_revisited_1.php

  48. #48 Vicki
    June 23, 2010

    Calli–

    I tend to feel that one should either use ordinary English plurals, or the correct Latin or Greek. (Hence, “octopi” is right out: the choices are octopodes or octopuses.)

    But this is informal chat (as well as being a reference to an old post). In a context like this, I might query an unclear sentence or paragraph. (A lot of blog posts and most comments are first draft.) But whether it’s opuses, opi, or opera? No more than I’d come along and point out other small typos.

  49. #49 ebohlman
    June 23, 2010

    James: You’ve put your finger on the problem. Isaac Asimov once said (I believe this was quoted in John Allen Paulos’ innumeracy) that pseudoscience offers the promise of certainty, whereas all science offers is doubt and tentative conclusions. People generally prefer fake certainty to genuine uncertainty.

    Worse, we have a cognitive bias that causes our “intuitive” judgment of how much someone “really knows his stuff” to be based on how self-certain he comes off as, and it sways us, even though Dunning and Kruger were hardly the first to observe that actual competence in a topic is inversely related to self-certainty about that topic (they were the first to explain the mechanism).

    Still worse, the more emotionally important a subject is to us (e.g. our health or especially our children’s health), the more weight we put on the perceived likability of someone we want advice from and the less weight we put on actual signs of expertise. This phenomenon could reasonably be called “Jenny McCarthyism.” By the way, this finding comes from marketing research; rationalists and progressives turn up their noses at such findings at their peril, because anti-rationalists and reactionaries know how to use them.

  50. #50 staceyjw
    June 23, 2010

    Susan:
    Check out Science based Medicine, they just did an article on Cancer Centers of America:
    http://www.sciencebasedmedicine.org/?p=5764

    There is a lot to love about that site. You can also go to Quackwatch and see about any potential “treatment”

    Its true that Science doesn’t know everything about Cancer, but that doesn’t mean that uneducated charlatans that don’t even try to prove their “treatments” are effective know better. Stick to conventional medicine, even though it won’t promise a cure like a quack.

    I can understand the need to do something positive to help yourself. Maybe those positive things could be things that make you feel good instead of medical practices- go to a spa, get a good massage, buy yourself something nice, take a loved one to dinner- this way you will get enjoyment out of your money and time, instead of false hope and bankruptcy. (funny, most quacks don’t work for free, and want you to mortgage something to pay them….)

  51. #51 squirrelelite
    June 23, 2010

    @pareidolius 39,

    Actually, Aida vs the Beta Monster sounds like it might be fun. Does the Beta Monster have a crystal eye that Aida shatters to kill it by singing loudly at the resonant pitch?

    Is there really such a movie? I did a google search and didn’t find it.

    I kind of like the theme from an Italian opera (also Puccini) set in China that was used by a British residing Indian film maker in a movie about girls who travel to Germany to play soccer. It is truly Hot! Hot! Hot!

  52. #52 DLC
    June 23, 2010

    One of the big problems is that people simply haven’t got the basic education to understand what a doctor means when the doctor describes cancer. How many people even had to take basic biology ? how many remember any of that which they were told “you won’t really need to know this”? Then couple that to the idea that “Medicine is hard, I Can’t understand it! ” and you get people who are told they have cancer cells in their lymph ducts but that hasn’t infiltrated the breast tissue itself yet and don’t understand it.
    University of Google follows.

  53. #53 mndean
    June 24, 2010

    Hydrogen peroxide is a nasty nasty chemical.

    Try telling that to someone who’s been hit by the woo. I have a friend who says he drinks a small amount of peroxide every day. I told him (after explaining that it wasn’t very good for him to drink peroxide) that I’d get him a much stronger solution of peroxide than OTC and he could drink that. He said, “great!”.

    *sigh*

    P.S. Yes, I emailed him the MSDS for the 30% strength. He still drinks his little bit of the 3% every day, saying, “It can’t really hurt me.”

  54. #54 Susan
    June 25, 2010

    Thank you to everyone who responded to my question about IV Vit C therapy for metastatic breast cancer. I read all of the your links, and more. I now believe it’s all woo, but sometimes when I am listening to a pro integrative med person talk and show me studies(?) I fall under their spell and start hoping and believing. This scares me. Perhaps I am so shocked about my terminal prognosis that I have lost my critical thinking skills.

    I am smart, educated, PH.D. in psychology but work in a hospital with medical patients,and thought I was able to figure this stuff out and collaborate with my team on my care. But I feel so much like a patient now hanging on to every word my onc says, researching everything I can.

    Mostly I have learned: 1) there is A LOT that cancer specialists do not know, a lot we don’t understand about cancer and cancer tx is sort of a cook book of standard protocols without real individualization for my cancer type, dosages, etc. It’s trial/error. 2) Onc have a narrow focus of attention on disease – none of my team recommended any wellness or supportive care and I am at a good NCI center. Even after liver mets, when I asked how could I support my liver health I was told “don’t take Tylenol or drink to excess”. This pushed me towards integrative medicine. Here I learned 3) They also don’t know much about cancer and but are willing to promise a lot without being able to show me the studies!

    Who to believe? What to think? What to do? No wonder woo is so popular, compelling, hard to combat. It’s seductive to someone who wants to do anything to live longer and is basically being told there is nothing to do. “We just don’t know…” Well if my guess is as good as yours then what’s wrong with a little woo :)

    And btw, clinical trials are only for the really ready to die folks who are willing to risk it all and become sicker in the process for the small chance of living a few more months. Disappointing day when I figured this out.

  55. #55 Todd W.
    June 25, 2010

    @Susan

    Glad you found the links people provided helpful, and sorry if it may have resulted in some disappointment. Living with uncertainty is hard, and it really is very easy and, well, human to strive for understanding and reassurance. As you’ve discovered, that is part of what makes woo so attractive. We are, all of us, prone to being deceived, whether by ourselves or others. I wish you all the best in your treatment and hope you find what works!

  56. #56 Don Cox
    June 26, 2010

    “My response is that I prefer my food dead. ” (19)

    I prefer apples, grapes, bananas, lettuce and many other foods to be alive when I eat them.

    I agree that meat is better when dead and cooked.

  57. #57 Chris
    June 26, 2010

    Don, does that mean you must eat the apple while it is still hanging from the tree and kneel on the ground to munch lettuce? I am not quite sure how you eat bananas without stripping the skin off of them, and I actually cook one type, plantain. Because they are not photosynthesizing unless the leaves are exposed to light and getting water from their roots. And they are really dead once you cook them!

    By the way, I bought cheap Costco apples last month. I covered them with sticky stuff (tanglefoot), and hung them on my five apple trees and one pear tree as a coddling and apple maggot trap. The cheap apples were picked last fall and had been in cold storage.

    So unless you get your apples straight from the tree, it has more than likely been in some kind of atmosphere controlled cold storage.

  58. #58 Robert Redfern
    August 8, 2010

    I see lots of references to science and studies on this blog but I wonder which are honest. The Pharmaceutical industry are fined billions of $ for fraudulent studies, withholding critical information and outright bribing of doctors. Who do I believe? These studies and doctors are never call Quacks?
    Maybe when all studies are validated using blind Pure Research and the pharmaceutical industry are not allowed any direct or indirect contact with doctors (advertising or press releases via the media in any form) confidence may return. Until then anyone (MDs and Quacks) offering any therapy or treatment should have to publish their cases and the outcomes in an easily readable form so we can at least have some truth as base our judgment of our best course of action.

  59. #59 MI Dawn
    August 8, 2010

    @Robert Redfern: if you have been reading the blog for long then you will recall several posts in which Orac has written about poorly done scientific research by doctors, pharmaceutical companies, etc. If you haven’t, then please use the search function to read them THEN post your comment. Until then, don’t whine about things that you weren’t aware have been addressed already.

  60. #60 Orac
    August 8, 2010

    One notes that woo concern troll (Rick Redfern) is concerned because he thinks I don’t criticize bad science when it comes to pharma too. He is wrong and irrelevant, using nothing more than a tu quoque logical fallacy.

  61. #61 Taelore
    March 20, 2011

    Goodness you are one close minded idiot who has no clue what your even talking about. I witnessed John of God first hand and it is not fake. And for the record cancer cannot survive in a body that is alkaline . Cancer is often caused by radiation and the medical worlds way of fixing it is through radiaion… Now that to me seems a little “woo” as you would put it. It’s time to wake up and realize that this world is far more amazing then what we know. Every illness can be cured by something the earth has provided, not by synthetic poison such as chemotherapy.

  62. #62 Taelore
    March 20, 2011

    Goodness you are one close minded idiot who has no clue what your even talking about. I witnessed John of God first hand and it is not fake. And for the record cancer cannot survive in a body that is alkaline . Cancer is often caused by radiation and the medical worlds way of fixing it is through radiaion… Now that to me seems a little “woo” as you would put it. It’s time to wake up and realize that this world is far more amazing then what we know. Every illness can be cured by something the earth has provided, not by synthetic poison such as chemotherapy.

  63. #63 novalox
    March 20, 2011

    @61, 62

    Yawn, another idiot necromancer troll.

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