Respectful Insolence

As a cancer surgeon specializing in breast cancer, I have a particular contempt for cancer quacks. In particular, that contempt smolders and occasionally bursts in to flames right here on this very blog and, to a lesser degree, elsewhere, when I see instances of such quackery applied to women with breast cancer. They are, after all, the type of patients I spend all my clinical time taking care of and to whose disease my research has been directed for the last 13 years or so. That’s why I keep revisiting the topic time and time again. Unfortunately, over the years, when it comes to this topic there’s been a depressing amount of blogging material to feed the gaping maw with an unrelenting hunger for new material that is this blog (or any blog).

One question that comes up again and again is, “What’s the harm?” Basically, this question boils down to asking what, specifically, is the downside of choosing quackery over science-based medicine. In the case of breast cancer, the answer is: plenty. The price of foregoing effective therapy can be death; that almost goes without saying. In fact, it can be a horrific and painful death. It is, after all, cancer that we’re talking about. Aside from that, however, the question frequently comes up just how much a woman decreases her odds of survival by avoiding conventional therapy and choosing quackery. It’s actually a pretty hard question to answer. The reason is simple. It’s a very difficult topic to study because we as physicians have ethics. We can’t do a randomized trial assigning women to treatment or no treatment, treatment or quacke treatment, and then see which group lives longer and by how much. If a person can’t see how unethical that would be without my having to explain it, that person is probably beyond explanations. (As an aside, I can’t help but point out that a randomized trial of not vaccinating versus vaccinating is unethical for exactly the same reason; physicians can’t knowingly assign subjects to a group where he knows they will suffer harm. There has to be clinical equipoise.) There’s no doubt that foregoing effective treatment causes great harm.

So when it comes to figuring out just how much harm a woman risks by choosing quackery, all we’re left with, and rightfully so from an ethical standpoint, are lower quality studies, usually retrospective, and, fortunately, not very many of them. The reason is that they’re very hard to do, again because they’re retrospective and generally it’s hard to locate a sufficient number of women who turn down all surgery. The last time I found such a study was nearly six years ago. It was a small study of only thirty three patients, but it found significantly decreased survival among the patients examined. For example, five out of six patients who refused surgery progressed to stage IV metastatic disease, with a median time to being diagnosed with metastases of 14 months. Another study examining 5,339 women who refused surgery alone, but not necessarily other treatments, found that patients who refused surgery had a significantly decreased survival and a two-fold higher chance of dying of their disease.

Just this month, another such study was published in the World Journal of Surgical Oncology. It’s a study out of Alberta, specifically the University of Alberta and the Cross Cancer Institute and is entitled simply Outcome analysis of breast cancer patients who
declined evidence-based treatment
. Its design was relatively simple; it was a retrospective chart review of breast cancer patients who refused recommended treatments from 1980 to 2006. Patients who had “refused standard therapy” were defined thusly:

Any patient who has completely refused the recommended standard primary treatment plan following biopsy confirmation of breast cancer is considered as refusal of standard treatment. Primary treatment could be surgery, neoadjuvant radiotherapy or chemotherapy. Patients who refused adjuvant treatments following surgery were not included in this analysis.

That makes this study one of the uncommon studies that really look at what happens when women refuse all standard therapy for breast cancer. Regular readers will remember that I’ve written about the “breast cancer alternative cure testimonial” for a long time. Indeed, one of my first “major” posts ever for this blog was about just that topic. What’s important to remember about these testimonials is that, in almost all cases, the woman will have undergone some sort of potentially curative surgery, usually a lumpectomy or an excisional biopsy large enough to qualify as a lumpectomy, and then have refused further therapy; i.e., adjuvant chemotherapy, antiestrogen therapy (such as Tamoxifen), and/or radiation therapy. Adjuvant therapy is just that; it’s an adjuvant to the main treatment, which is surgery. As I’ve pointed out so many times, surgery is the main curative therapy for breast cancer for stage I and II breast cancer; the adjuvant chemotherapy and radiation therapy are just “icing on the cake,” so to speak. Radiation therapy decreases the chance that the cancer will recur in the local area in the breast where it was cut out, while chemotherapy and hormonal therapy decrease the chance that it will recur elsewhere in the body and kill the patient. (That’s a simplistic description, because there is good evidence that radiation therapy also contributes to a survival benefit, but it is, roughly speaking, a good way to articulate the benefits of adjuvant chemotherapy and radiation therapy.) In stage III breast cancer, surgery and chemotherapy are usually both required to effect a cure, but surgery can in some cases still cure such a woman.

What you will find in most testimonials is a woman refusing chemotherapy, hormonal therapy, and/or radiation therapy and then crediting her survival to whatever quackery she decided to try, when in reality it was the surgery that cured her. All she accomplishes by refusing additional therapy is to increase the odds that her tumor will return, but, given that in early stage cancer surgery alone has a pretty high cure rate, the woman’s odds were pretty good before receiving any chemotherapy. So right away, that makes this study important, even though it wasn’t published in a particularly high impact journal. At 185 patients, it’s one of the larger series of patients who refuse all conventional therapy. The authors used a matched analysis to pick a control group by picking matched patients who underwent conventional therapy who matched the following characteristics of the patients refusing therapy: age (± 3 years), calendar year and clinical stage at diagnosis. This control group consisted of five controls for every patient refusing therapy. The authors then excluded patients over 75 because that has been the cutoff for clinical studies and active treatment protocols with chemotherapy in the past. This is actually a weakness in the study, because these days 75 years old no longer represents a cutoff above which chemotherapy won’t be administered. If a patient is reasonably healthy and has a good performance status, oncologists are increasingly willing to administer chemotherapy to octogenarians. However, this is a relatively recent development, and surgery has not traditionally been withheld from more elderly patients unless they are in really poor health with a life expectancy less than a couple of years.

Be that as it may, that exclusion criteria left 87 patients under 75 who initially refused all therapy. The majority of patients who refused therapy were married (51%), older than 50 (61%), and urban residents (66%). As far as diagnostic criteria went, 57 patients had biopsy confirmation of their tumor only, while 30 ultimately underwent delayed surgery. 50 patients decided to undergo alternative medicine treatment, while the reasons the other 37 refused therapy were unclear or not described. The characteristics of the patients arelisted below:

It should be noted that the average delay of surgery in the patients who ultimately underwent surgery was between 20 and 30 weeks, while the delay among women who presented with stage I disease (or stage 0 disease, otherwise known as ductal carcinoma in situ) ranged from 41 to 101 weeks, with a median delay of 62 weeks. All the stage II and III patients returned to the cancer center with Stage IV disease, while the stage I patients returned with stage II, III, or IV disease. To put it more bluntly, nearly every patient who initially refused treatment progressed to a higher stage. In only four patients did the cancer fail to progress, and in none of them did the tumor shrink and downstage. It’s even uglier when we look at survival. The following graph compares disease-specific survival between patients who refused therapy and those who did not:

The difference in survival between those who underwent standard therapy shortly after thye were diagnosed with breast cancer and those who refused. The results are summarized thusly:

The 5-year overall survival was 43.2% (95% CI: 32.0 to 54.4%) for those who refused standard treatments and 81.9% (95% CI: 76.9 to 86.9%) for those who received them. The corresponding values for the disease-specific survival were 46.2% (95% CI: 34.9 to 57.6%) vs. 84.7% (95% CI: 80.0 to 89.4%).

Differences this huge are seldom seen in survival curves. Going back a ways to an older discussion of mine, in which as part of the discussion I discussed a classic paper by Bloom and Richardson that looked at the natural history of untreated breast cancer from the late 1800s to the early 1900s. The graph looks like this:

i-f487e7adfb152faa81fb736ed354b4e3-3373236628_e9ebaa7c2b_o.jpg

A proponent of so-called “complementary and alternative medicine” (CAM) might look at this curve and ask why the five-year survival for untreated breast cancer was around 18% while in the current study it was 43%? Aha! they might say, CAM does something! Well, not really. First, remember that 30 of the patients in the current series did ultimately undergo surgical therapy. More importantly, remember that 100 years ago there was no mammography or ultrasound. Each and every cancer diagnosed was diagnosed when the woman had symptoms, the vast majority of a time a lump in the breast. Nearly all women were stage II or III when diagnosed. In marked contrast, far more patients from 1980 to 2006 were diagnosed by mammography, which led to a larger number of stage I cancers and especially noninvasive cancers (i.e., DCIS). Finally, we’re comparing two different time periods, and we have no idea what the distribution of tumor characteristics were in the Bloom & Richardson paper compared to the characteristics of the patients in the current series. In other words, it’s just not possible to compare the two series, and, even in the absence of treatment (which includes the use of CAM, in my book), you can’t compare the series. Either way, by today’s standards, a five year median survival of 43% for all comers in breast cancer is pathetic. It probably is close to the expected five year survival in essentially untreated cases.

But wait! Let’s look at one more graph. This is a comparison of five year, disease-specific survival between women who chose to undergo CAM therapies instead of effective therapy and women whose reason for refusing therapy is unknown:

The authors write:

Since 58% of patients received different kinds of CAM, a comparison of the outcome was performed between groups who received CAM and those whose treatment details were not known. Figure 2 compares the survival patterns of women who refused treatment who either received CAM or for whom the reason for refusal was unknown. The 5-year overall survival was 57.4% (95% CI: 42.7 to 72.1%) for women who received CAM and 26.3% (95% CI: 11.3 to 41.3%) for those whose treatment details were unknown. The global survival for the CAM group was better than for women whose reason for refusal was unknown (p ≤ 0.05), and disease-specific survival for the CAM was better for women whose reason for refusal was unknown, but this was not statistically significant (31.5%; 95% CI: 15.1 to 48.0%).

I could see CAM supporters grasping at this graph to argue that CAM has an effect on survival. That would be grasping indeed. First, the difference is not statistically significant. Second, we have no idea what the distribution of stages and other relevant tumor characteristics is in each stage. Are they well matched? Probably not, but we have no idea. We also need to remember that the “unknown” group is just that, unknown. We don’t know why these patients refused therapy, and we don’t know whether or not some of them underwent some form or other of CAM treatment. Basically, we don’t know why there was a trend towards an improvement in disease-specific survival in the CAM users compared to the others in terms of survival and a a statistically significant difference in overall survival. Most likely it’s because the two groups aren’t matched, and we have no idea what sorts of CAM therapies patients in the CAM group actually used.

No matter how anyone tries to spin it, this study adds to the slowly growing body of evidence that, taken as a whole, conclusively demonstrates that (1) “conventional” science-based care works and (2) eschewing “conventional” science-based care has disastrous consequences. I always tell patients after they’re first diagnosed that if there’s one “good” thing about breast cancer it’s that it’s not an emergency. There is time to think about therapeutic options and decide upon a treatment plan. The tumor has, after all, been there many months to many years. A delay of a month or two in treatment almost never makes much of a difference in outcomes. However, longer delays are dangerous, with the danger increasing along with the length of the delay. Choosing CAM or, let’s call it what most of it is, quackery, serves no purpose but to delay effective treatment, increase the likelihood that the cancer will progress to become incurable, and decrease the likelihood of cure. That progression can be horrible, too. Just go back and look at the case of Michaela Jakubczyk-Eckert. Do not click on the link, however, if you have a weak stomach.

At best, choosing CAM over effective therapy can preclude less invasive therapy and necessitate more radical treatments after the tumor has progressed, forcing a mastectomy when lumpectomy would have done if the tumor had been treated in a reasonable amount of time. At the worst, it can allow sufficient time for the tumor to metastasize and progress to stage IV. Choosing CAM over effective medicine not only increases the chance of dying from cancer, but it increases the chance of dying horribly from cancer. This study is just another piece of evidence that reminds us of this.

Comments

  1. #1 JLI
    Denmark
    August 30, 2012

    Are they well matched? Probably not,

    I think it is highly unlikely that they were matched. The article explains their matching strategy between the treatment receiving and refusing groups, so the researchers definitely understand the concept. I am almost 100% certain they would have mentioned a CAM/unknown matching had it been performed.

    In a recent post of ours, we have included this study, and also a few more. The conclusion remains the same, but if anyone is interested in those studies too, the link is here: http://anaximperator.wordpress.com/2012/08/08/there-is-no-time-to-wait-for-alternative-cancer-therapy-to-work/

  2. #2 Bob G
    Los Angeles
    August 30, 2012

    The subject of a bill in the California legislature has been a topic of discussion here. Briefly, it requires parents to be given professional advice if they choose to exempt their children from vaccinations prior to attending public schools. The Los Angeles Times has published a series of articles on the vaccine denialists and just ran an editorial supporting passage of the bill. Here are links to the editorial, an earlier editorial, and an article, all presented in reverse order. I notice that the earliest piece allowed for comments, which resulted in several anti-vax comments which really didn’t make a lot of sense. The Times has been straightforward in reporting on the pertussis outbreak.

    http://articles.latimes.com/2012/aug/28/opinion/la-ed-vaccination-school-ab-2109-20120828

    http://www.latimes.com/news/opinion/opinion-la/la-ol-vaccine-bill-california-20120824,0,5816567.story

    http://articles.latimes.com/2011/aug/16/opinion/la-ed-vaccine-20110816

    http://articles.latimes.com/2011/mar/05/opinion/la-ed-vaccine-20110305

  3. #3 Renate
    August 30, 2012

    If you think the pictures in the link Orac showed, are horrible, don’t look at the picture in the anaximperator link.
    But those thinking they can cure their cancer by wishfull thinking alone, probably should see it as a gruesome warning.

  4. #4 Ren
    A Crowded Metro Train
    August 30, 2012

    Two stories, if I may.

    There is a woman in my extended family who developed a lump in one of her breasts. She is a very devout evangelical christian. She refused to go see a doctor about it. The lump got bigger and bigger. It wasn’t painful, but it was larger than before, visibly so. So she decided to see a doctor, but she insisted on no biopsy. A few days after her doctor’s visit, in the physician called to try to convince her to get a biopsy. She said she didn’t need it because God would take care of her. The days went by and a nurse called her, also trying to convince her. It was then that she decided to leave their care. She asked that they don’t bother her anymore. The physician sent her a letter to discharge her from the practice, noting in the letter that cancer was one of the possible diagnoses and that she should seek care immediately for the lump. She refused and even laughed at them. This story has a happy ending because the lump eventually swelled and, grossly, exploded. It was likely a cyst. It was definitely something benign. This was twenty years ago, and she is still alive and well.

    The second story is not as good. I had a friend in high school who discovered a lump in one of his testicles. All of us, his friends, told him to go get it checked out, in between taunts and teases about STDs, of course. We were kids. He didn’t tell anyone in his family about it. In the summer between my sophomore and junior year of high school, he finally went to get it checked out. He had a surgery almost immediately and went into chemotherapy right after that. He didn’t show up for school my junior year. That December, we were told he was in hospice. He died the next spring. I heard some of my friends react with anger at the chemotherapy. See, it came right before he got really sick. Before that, he was relatively healthy, even playing football for the junior varsity team.

    Of course, this is a small sample size from which we should infer nothing scientific. But it does highlight the fact that there will be those who refuse care and be okay because their condition was not deadly. And there will be those whose condition is deadly, and they will refuse care until it’s too late. Then, because we’re human, the care will be blamed since it came immediately before the outcome.

    On the one hand, I want to judge that human reaction and do something about it. On the other hand, it’s part of the human condition to make some ridiculously wrong decisions. The problem comes when people who should know better lead us astray… People like physicians who turn out to be quacks or quacks who know their remedies don’t work. Or people who have no evidence whatsoever that their approach works and stubbornly refuse to try something that has been proven to work.

  5. #5 Science Mom
    http://justthevax.blogspot.com/
    August 30, 2012

    Patients who refused adjuvant treatments following surgery were not included in this analysis.

    I have a problem with this exclusion. Unless it’s going to be used as a separate analysis (and I don’t see why it would) then this is also useful information and should not have been excluded.

  6. #6 JLI
    http://anaximperator.wordpress.com/
    August 30, 2012

    @ Science mom:

    …this is also useful information……

    It is useful information, but I don’t think it reduces the importance of the findings in this study.

    Besides others have looked into this aspect. This aspect was covered in the study Orac posted about 6 years ago. And also in the other studies discussed in the post on Anaximperator I linked to in the comment above.

  7. #7 W. Kevin Vicklund
    August 30, 2012

    Conclusion

    Women declined primary standard treatment had significantly worse survival than those received alternative treatments. There is no evidence to support using Complementary and Alternative Medicine (CAM) as primary cancer treatment.

    Be forewarned that the online abstract has the above conclusion. The provisional PDF, available at the same site, instead says “that received standard treatments” where I have bolded. The PDF has the correct conclusion (evidence: same wording in its abstract and conclusion, proper grammar, consistent with reported results).

  8. #8 W. Kevin Vicklund
    August 30, 2012

    Oops, “who recieved,” not “that received,” and also the PDF conclusions starts with “Women who declined…” (em. mine). WJSO has been notified of the error.

  9. #9 Rose
    August 30, 2012

    Surgery alone was the standard of care for breast cancer for many many years. People who just have surgery are opting for medical treatment no matter what alternatives they use afterwards. They are just opting for outdated medical treatment.
    For them to say that it is coffee enemas or Rife machines or the Gerson protocol that saved their lives is wrong. There are however many women who believe that and put themselves through expensive worthless treatments and like true believers everywhere are blind to the truth.
    The sugar feeds cancer crowd told me I was going to die an early death because I mentioned on a breast cancer support site that I had cake at my granddaughter’s birthday party.

  10. #10 elburto
    August 30, 2012

    Ren – WRT beliefs, my partner has been convinced for years that giving up cigarettes causes lung cancer.

    She’s intelligent, studied forensic science at uni, hates sCAM with a passion, but will not be disabused of this belief that quitting=dying. Several relatives of hers who’d given up smoking were dead five years later.

    I’ll just have to keep trying. If anyone has any studies on the positive data linking smoking cessation with reduced cancer. risk, please help an SBM sister out!

  11. #11 Calli Arcale
    August 30, 2012

    Although the difference between the CAM and unknown groups in that last chart isn’t statistically significant, I could imagine a plausible explanation without assuming CAM works (which means CAM-promoters will need to refute this explanation before theirs can be presumed superior): some of the unknown group may be people who did not *want* to be cured because their odds are worse that way. Women who are already in very poor health otherwise might rationally decide not to pursue chemo and allow nature to take its course instead. Their outcomes could be expected to be worse, as their bodies might not hold out as long. Would we expect different survival curves from a Stage II 30 year old cyclist and call center representative using reiki, or a Stage II 30 year old multiple amputee Iraq war veteran who is refusing treatment in hopes the cancer takes away the bad dreams the shrinks can’t cure? Probably. But since we don’t know anything about the “unknown” group, we can’t know. I just suspect that the “refused treatment because doesn’t see the point” group would be entirely within the “unknown” group in this study. That group wouldn’t try CAM for the same reason they wouldn’t try chemo.

  12. #12 Science Mom
    http://justthevax.blogspot.com/
    August 30, 2012

    It is useful information, but I don’t think it reduces the importance of the findings in this study.

    I agree however I think that surgical intervention alone would be a useful parameter to measure.

  13. #13 lilady
    August 30, 2012

    What a powerful and thought provoking post.

    I haven’t yet faced, a diagnosis of breast cancer, but have provided care to hospitalized patients with advanced breast care. The photo of the woman on the anaximperator blog brought back unpleasant memories of a woman that I cared for.

    She came from Puerto Rico to the American hospital for *treatment* and to be close to her son who was in a residency at that hospital. The fungating wound covered her entire, rather large, breast. Poor thing, she was a delightful patient and *understood* why we left her bedside momentarily to change gloves during dressing changes. (The stench of rotting flesh from the profuse bloody purulent discharge was overpowering).

    Does anyone recall when the surgical option was only mastectomy ~ 40-50 years ago? My maternal aunt and many women I knew *automatically* had mastectomy, if the biopsy showed cancer. Back then, a woman would sign two informed consents before biopsy, and if the biopsy was positive for cancer, while they were still anesthetized, their breast would be removed.

    We have made great advances in breast cancer treatment. Think about all the women who have had lumpectomies…they would all have had mastectomies 40-50 years ago.

  14. #14 Lancelot Gobbo
    August 30, 2012

    “WRT beliefs, my partner has been convinced for years that giving up cigarettes causes lung cancer.

    She’s intelligent, studied forensic science at uni, hates sCAM with a passion, but will not be disabused of this belief that quitting=dying. Several relatives of hers who’d given up smoking were dead five years later.

    A chest physician at the Whittington in London taught me 40 years ago that the first sign of lung cancer was often the “VAT” – the voluntary avoidance of tobacco. I don’t believe he had anything beyond anecdote to back it up. I would speculate that smokers who have coughed up blood or notice their breathing deteriorating might be inspired to try quitting, and for some of them it will be too late.
    As for reduced cancer rates after quitting, I was also taught that seven years after quitting the risk of lung cancer is about the same as a non-smoker’s. Sorry to say I don’t have a study to back that up.

  15. #15 palindrom
    August 30, 2012

    It’s probably worthwhile to point out, in the interest of inclusion, that breast cancer also strikes men, though the ratio of female to male cases is about 100 to 1. That’s still something like 2000 cases annually nationwide.

  16. #16 palindrom
    August 30, 2012

    THS @11:41 — In a perfect world, this woman’s survivors (should she die, which sure looks likely) would collect an enormous settlement from Dr. Lodi.

  17. #17 THS
    A quiet creek valley; light fog, soon to lift
    August 30, 2012

    Thanks, Orac, for another good one. I found my way to this site some months ago probably via Quackwatch links to skeptical sites. Here’s what got me going: a note from my brother – see an excerpt in the paragraph below:

    (My friend) … is now in stage IV of metastasized breast cancer. This was probably the unavoidable consequence of her decision two years ago to try to cure herself with “alternative,” “holistic” therapy. Now she’s gone to Arizona for last-ditch treatment. The family is appealing for funds to defray the cost…

    It turned out that she’d gone to something called: An Oasis of Healing Alternative Cancer Treatment Center. The website lists a Thomas L.V. Lodi, MD, Homeopathic Physician (whatever that is). The pitch is quite slick, combining the usual mix of woo and pseudoscience – leavened with occasional obvious common sense and MD credentials – you-all know the formula. And hey, there’s a linked website with very good and easy way to contribute money for the “treatment” of the unfortunate folks who fall for the pitch.

    I’m glad to see that this character has been well covered by Orac on his December 2, 2011 blog – very well done indeed.

    That’s also typical of my experience with RI. I see something, maybe make a comment, keep searching old blogs and generally find that if I’ve had something constructive to add it’s already been covered in more detail. I continue to explore RI. Thanks also to the regular contributors past & present whose comments add depth and dimension & are sometimes amusing, too.

    Last I heard my bro’s friend was very, very ill.

  18. #18 Denice Walter
    August 30, 2012

    As usual, Orac ( being a Time Lord or suchlike) reminds us that time is not always on our side.

    What causes me so much distress and ire on a near-daily basis is how alt med, by prevarication, gets people to fear SBM and DELAY examination and treatment.

    I’m not sure, but I venture that their aspersions became even more vitriolic around 4 years ago, as the economy entered the era of libor peaks, falling indices and all of us quaked in our boots and slept un-soundly, worrying about what the next day’s news would bring.

    Perhaps the woo-meisters feared that economic disaster would cut into profits. At any rate, their venom became stronger and more vicious. Now it is par for the course. I have no idea how much this rhetoric has affected people’s decisions but it is interesting to read how SB dissenters ( e.g. @ bc.org) parrot memes that I’ve heard before- too many sickening times to count.

    They teach impressionable, frightened people to fear what can most likely help them most. If I believed in hell, there would be a horrible place at the bottom of it reserved exclusively for them.

    One of the chief offenders, Mike Adams, today providers us with a glimpse inside SBM . Or so he believes.
    Now, he’s scaring people off of anti-biotics and teaching an alternative course of action.

  19. #19 elburto
    August 30, 2012

    Lancelot – re. VAT – oddly enough I’d brought that up as a theory, that perhaps they quit purely because they were starting to feel unwell.

    Interesting. Thank you!

  20. #20 Marc Stephens Is Insane
    August 30, 2012

    Testing. Comments are not working properly for me. Just had a comment disappear into the Oracsphere.

    Anyone else having problems. I also can`t type some characters, like question marks. They show up as accents.

  21. #21 Heliantus
    August 30, 2012

    @ Calli

    Re: CAM vs unknown graph

    I just suspect that the “refused treatment because doesn’t see the point” group would be entirely within the “unknown” group in this study.

    I had the same thought. I was speculating that the “unknown” group will likely include people who gave up hope, for whatever reason. Not in the sense “negative thoughts make it worse”, but as you said if caught in the depressive “what’s the point”.
    Someone delaying or refusing medical care for cancer may also do so for any unrelated health issue they may also have. Which could be a factor in reducing their survival chances.

  22. #22 lyle
    August 30, 2012

    Given that we don’t want the state dictating that you will be treated and you will like it: The patient must remain able in the end to choose what she/he wants. Bob G reports on a solution for vaccines that could apply here, tell people the consequences of their decision, and be sure they sign and initial a document outlining them. Following the principal of informed consent that is used in experiments, here be sure the patient has been informed of the consequences of the decision and IMHO the ethical problem for the physician is solved unless we want state dictation you will accept this treatment.

  23. #23 Narad
    August 30, 2012

    WJSO has been notified of the error.

    That’s an odd one, as they specifically state that there’s no manuscript editing. (Indeed, “All Additional files will be published along with the article. Do not include files such as patient consent forms, certificates of language editing, or revised versions of the main manuscript document with tracked changes.” This is some guy shoveling manuscripts into a hopper and pressing a button.)

    I mean, if I’m paying a flat fee of $2 grand, I want to know that when you say “no editing,” you’re not going to go ahead and monkey around anyhow. The other possibility, that it’s in the accepted manuscript, does not bode well.

  24. #24 THS
    sunny afternoon
    August 30, 2012

    @palindrom (11:46) – thanks for your comment -
    Yes, but she’d been doing “alternative, natural” treatment of some sort for a couple of years before going to that clinic. So she was in bad shape already. I suspect that many of the people who go there are already very sick and I also suspect that the clinic is quite slick about covering their own interests. You should see the website: all this woo and the usual disclaimers about this not being medical advice, see your own doctor, etc.

    In a better world the clinic would be held accountable in any of a number of ways. Perhaps Orac could think of some. At the very least, the patients’ families should get their money back.

  25. #25 W. Kevin Vicklund
    August 30, 2012

    Yeah, it’s… odd. The word “who” is dropped at least 5 times, plus they changed “standard” to “alternative” in the conclusion. It’s grammatically poor, and doesn’t make any sense to make any of those changes for the final manuscript. I have been told “the Production Manager will be in touch with [me] shortly”

  26. #26 Spectator
    August 31, 2012

    California, again digging itself towards somewhere hot and radioactive.

    “choose to exempt their children from vaccinations prior to attending public schools.”

    The choice should be
    i) choose to exempt your kids from vaccination
    OR
    ii) send your kids to public schools

    Not both.

  27. #27 Interrobang
    August 31, 2012

    My mother just finished treatment for breast cancer, albeit she is still on an estrogen suppressor, and will be forever. She had surgery, chemo, and radiation, in that order, and did well with it — very few side effects, barring some hair loss and a three-day hospital stay because she contracted a bladder infection. I still remember a few years ago how, during one Easter family get-together, a bunch of my relatives were swearing up and down that they’d never have chemo if they got cancer, because chemo is so horrible and blah blah blah.

    I’m willing to bet I’m the only one who remembers that, given that the rest of my family are real authoritarian follower-types with prodigious talents for creative forgetting. Down the Memory Hole!

  28. #28 physicsmum
    August 31, 2012

    As a complete lay-person, I would like to comment on the horror pictures in the links.
    The picture in the anaximperator link looks very unreal, like something from a bad sci-fi movie, or even Dr. Who. I found the ones in Orac’s link much more real and compelling, so if you want to really impress someone I would recommend using the latter!
    So, is the picture from anaximperator really real??

  29. #29 Grant
    September 1, 2012

    I know this is an old (April 2012) article, but I wonder what Orac makes of this NIH study funded to “study the effectiveness of personalized baking soda therapy to treat breast cancer.”

    http://digitaljournal.com/article/323645

    I haven’t time to read this, despite it being tangentially related to a blog post I’m trying (not very well!) to write. I presume this study is to test for topical application rather than the systemic application as in the like of the (infamous) Dr. Simoncini – ?

  30. #30 JLI
    September 1, 2012

    ….So, is the picture from anaximperator really real??

    Unfortunately it is. The photo is from the research paper we blogged about. It is an extreme example – probably the most extreme in their series. But we have no reason to doubt its authenticity. We didn’t bring it to impress anybody. But it certainly did impress me.

    It says in that research paper, that on follow up, median tumour size was 7,8 cm (3,1 inches).

    There are more disgusting photos of neglected breast cancers here: http://www.pathguy.com/~dlaporte/br_ca.htm

  31. #31 physicsmum
    September 1, 2012

    Thank you for that, JLI.
    I meant “impress” more in the context of education. Many of my musical friends are heavily into woo, and one was recently raving about some wonderful doctor who is curing cancer with just vitamins. Statistics are unlikely to have much effect.

  32. [...] decided on doing, in essence, a “rerun.” I chose this particular rerun based on my post from last Thursday. I thought that rerunning this particular post is a good reminder of what the cost of eschewing [...]

  33. #33 W. Kevin Vicklund
    September 3, 2012

    To follow up, I was cc:d an email today apologizing to the corresponding author for the error in the abstract transcription. It has now been fixed.

  34. #34 Helen
    Hawai'i
    September 20, 2012

    Amazing! All of these men commenting on how stupid women are who REFUSE further treatment!!
    And a MALE surgeon telling us what we women need to do. I’m a woman with ADH and have been told I need 1/3 of my breast removed along with a sentinel node and f/up Tamoxifen. NO! I don’t even have cancer! It’s pre-cancerous! I have severe fibromyalgia and just the core needle biopsy knocked me into a terrible flare-up of symptoms. Any woman with fibromyalgia will tell you how horrific this disease is . I literally would rather die than go through the pain of surgery. We women get tired of you dudes telling us what to do! I want to keep my breast…and will NOT give it up and develop terrible pain for a pre-cancerous condition so my surgeon can have a successful “cure” rate.

  35. #35 Orac
    September 20, 2012

    Your story sounds a bit off to me. The standard of care for atypical ductal hyperplasia (ADH) does not include surgery, certainly not the removal of 1/3 of the breast, and it most definitely does not include sentinel lymph node biopsy. If you were unfortunate enough to encounter a surgeon who actually recommended a partial mastectomy and sentinel lymph node biopsy for ADH, run, don’t walk, away.

  36. [...] It’s by no means clear that conventional therapy would have been successful in saving Nancy. I can’t really make a particularly accurate estimate of what her chances would have been, because I don’t have enough information regarding what her cancer looked like on initial presentation or whether she had tumor in the lymph nodes under her arm. However, if we assume that “large” meant at least 5 cm in diameter, then we know that treatment, even surgery alone, had a good chance of giving Nancy long term survival of five years or even ten years or more. While it would appear that Nancy was “lucky” enough (if you can call it that) to have had a slow-growing, indolent tumor that took four years to kill her, even though effective treatment wasn’t begun until it had ulcerated, we can definitely say that her chances would have been much better with conventional therapy begun when she was first diagnosed than it was with all the herbal woo and the intermittent therapy not begun until it had become painfully obvious that the woo wasn’t working. We can even estimate the price, in terms of years of life lost. [...]

  37. #37 Helen
    Georgia
    November 20, 2012

    You can use me in a study! After a horrific core biopsy and two subsequent excisional biopsies (BCS) I am severely sick with fibromyalgia. I had finally gotten my FMS under control when the surgeries started. The surgeon would not listen to me and each surgery resulted in extensive hematomas and horrific pain. I am taking a total of 30 Percocet a day for three months with no relief and this surgeon wants to do MORE SURGERY as the margins STILL WERE NOT “CLEAN”! What is worse is that each time this “surgeon” leaves my path report on voicemail!! So much for HIPAA! There are more reasons than “alternative therapy” for refusal for f/up. I’m sure he will also send me a registered letter covering his ass, but I don’t care anymore. Some of us get rotten doctors! He hasn’t called an oncologist in and just wants to cut some more. There are worse things than dying of cancer…It’s having absolutely NO LIFE now.

  38. #38 Helen
    Georgai
    November 20, 2012

    BTW, one path report was atypia, one ADH, “possible” DCIS. Multiple surgeries in a patient with severe fibro is just ridiculous!

  39. #39 Shay
    November 20, 2012

    So get another doctor.

  40. #40 Mephistopheles O'Brien
    November 20, 2012

    Helen – you have my sympathy for your troubles.

  41. #41 Narad
    November 20, 2012

    What is worse is that each time this “surgeon” leaves my path report on voicemail!! So much for HIPAA!

    Beg pardon? Whose voicemail?

  42. #42 Calli Arcale
    November 20, 2012

    That sounds like a horrible experience, Helen, and you have my deep sympathy. Get another doctor. Now. You have a *right* to a second opinion, and you also have a right (in my opinion) to doctors who respect your humanity and do not attempt to steamroll your misgivings.

    You do not have to agree to surgery. Ultimately, it is your decision and yours alone. I very much hope you can find a new oncologist who will treat you with respect.

  43. #43 Narad
    November 20, 2012

    Oh, sweet Jesus, she wrote TINA in Prolog.

  44. #44 Narad
    November 20, 2012

    Oh, dear. I hope “telegraphic” is used figuratively here, as Hangul Morse is a rather specialized item.

  45. #45 Narad
    November 21, 2012

    Ah, the whole thing. It seems to actually involve maritime radio-telegraphy. The lack of acknowledged ONR funding is curious, as they weren’t exactly stingy in those days.

  46. #46 Narad
    November 21, 2012

    … And I suddenly realize that these last three comments, relating to Seneff, have been put in the wrong place. My apologies.

  47. #47 Alain
    November 21, 2012

    And your second link: the whole thing point to scienceblogs.

    Alain

  48. #48 thenewme
    November 21, 2012

    Helen,
    It sure sounds like you’ve been through the wringer. Something is definitely amiss in your case, and you absolutely need to find a competent doctor who can diagnose and treat you appropriately and professionally.

    I’ve been through more than a few surgeries for my breast cancer, including biopsy, double mastectomy, reconstruction, deconstruction, post-surgical necrosis debridement, multiple seroma aspirations, etc. I can say it has been no walk in the park, but if you’re taking 30 percocets a day, you need to get help asap. Seriously. Get the medical help you need, and then get some legal help to look into whether you may have been treated negligently.
    But don’t forgo appropriate diagnosis and treatment because you happened to choose a lousy doctor this time. And definitely don’t assume most doctors are “rotten” like this one.

  49. #49 Narad
    November 21, 2012

    And your second link: the whole thing point to scienceblogs.

    Wow, I managed to screw that up as well. The correct link is here (PDF).