I hate to finish up the week on a bit of a downer, but unfortunately this week I really wasn’t in the mood to do justice to Your Friday Dose of Woo, even though I have at least a couple of potential targets–I mean subjects–to cover for my (hopefully) fun little Friday exercise. I was gearing up to try anyway, when I saw something in my e-mail that saddened me greatly. (More on that in a moment.) I even thought of trying to pull off a post on a peer-reviewed article, even though it was pretty late when I got home. However, due to the careful reading and examination of data required, those take a lot more effort than the usual run-of-the-mill post, and I don’t like to rush them. I want my analysis to be well thought out, educational, and (hopefully) entertaining to read. So that was out in the time available.
Now that I’ve achieved a certain “stature” in the blogosphere, having managed to survive blogging more or less continuously for four years aside from a week off here or there for vacation, I get e-mail. Oh, boy, do I get e-mail, so much so that I can only imagine what the tsunami of e-mail that PZ gets is like. When I first reached the point where my e-mail volume was such that I could no longer produce a personalized answer to each and every message, I felt guilty at first, but I’m long past that point. I could spend every moment of my free time responding to e-mails and probably still not get to all of them. However, occasionally someone sends me something that demands a response. Occasionally, someone even sends me something that demands a not-so-Respectfully Insolent public response. Even more occasionally, though, someone who is very sincere but very wrong sends me something that, in my opinion, demands a very serious and respectful public response.
This was one of those cases.
A filmmaker named Seth Derek Aronson sent me an e-mail that read thusly:
Hello,
I am making a documentary about cancer. After watching my soulmate Audrey die of breast cancer last year, finding a cure has become my obsession. You can see the film’s trailer here…
Killing cancer – The “Walk Through Fire” Project: http://www.youtube.com/watch?v=4TJEXXt6dJc
Thank you.
Sincerely,
Seth Derek Aronson
I had a very bad feeling as I clicked on the link to Seth’s YouTube video:
It broke my heart to watch this, but it also disturbed me. Here, it seemed, was an embryonic clone of The Beautiful Truth, only potentially with far more emotional resonance than that rather hackneyed looking film. Indeed, here is an excerpt from Seth’s description of his film:
Walk Through Fire is a documentary about the epic struggle to save my soulmate Audrey from breast cancer, and the aftermath of my failure to do so. All footage shot while she was alive will be shown in color, everything shot after she died will be black and white. The b&w footage will include interviews with nurses, healers, oncologists and patients, talking philosophically and realistically about the potential possibility of curing cancer, as well as Audrey’s family and friends reminiscing about her life. The color footage, edited from 40+ hours of raw tape shot during her last years, includes:
Our experiences dealing with the American cancer treatment industry, which spent well over $10,000 of Medi-Cal’s money every week on pharmaceutical chemotherapy and radiation treatments, yet not a penny on healthy food, clinically proven herbs, yoga or massage. We filmed Audrey’s transformation from being a very ample bosomed woman with shoulder length hair to being bald and breastless, subjects she boldly discussed with the camera at numerous stages in her journey. Audrey was adamant that I film her once in the nude, saying goodbye to her legendary 36DD breasts before the surgery, for juxtaposition with footage of her scar after the double mastectomy. We detailed our search for honest, healing doctors, and horrible experiences dealing with doctors who were neither. Audrey shares introspective internal struggles of faith as she began to test the very endurance of the human spirit. Her amazing journey led her to search for salvation among numerous religions, from Wicca to Christianity. She had profound difficulties trying to eat healthy in America – it is much cheaper and easier to eat unhealthy. We unfortunately documented the effects of her going back to fast food, which quickly led to her tragic relapse, after my healthy cooking had helped bring her into complete remission. The complex dynamic of ex-fiancés living together – then apart during her remission – includes footage of our often brutal arguments. Besides money, most of our disagreements concerned a panoply of frustrations raising her two kids in such a difficult, stressful situation.
Audrey died in my arms on May 7, 2007.
The film could be very compelling. The problem is, it would be compelling in the cause of outright quackery. So, at the risk of seeming like an insensitive lout, I wrote the following letter to Seth. It started out as a personal e-mail, but then I decided to make it an open letter and e-mail him the link.
Dear Seth:
I’m very, very sorry for your loss. Believe me, I am. Like you, I have been touched by breast cancer in my family. My mother-in-law is currently in hospice dying of an unusual and particularly virulent form of breast cancer widely metastatic to many sites. My best friend’s mother died of breast cancer when he was in college. I know what breast cancer does and can do. In the last four years, I have seen an additional two family members die of other forms of cancer, one of lung and one of lymphoma. In my capacity as a breast cancer surgeon, I have seen more women than I want to remember diagnosed with breast cancer. Many, I could save with surgery. Many I could not offer anything more than a port placement for chemotherapy that would not save them.
I do not know the stage at presentation of Audrey’s breast cancer; so I cannot know what her odds were up front. However, having seen the clip from your project that you sent me, I was very disturbed. Very disturbed indeed. However, there was another reason in addition to seeing a young, beautiful, and vibrant woman cut down in her youth by breast cancer, and it was your reaction to it. In short, what little I saw of the content of your film project contains, in addition to some stirring footage of Audrey, a considerable amount of material about cancer that is just plain wrong and even potentially dangerous to cancer patients. That is why I cannot support your project. In fact, if I were to do anything at all, my conscience would demand that I, as a cancer physician, oppose your project in its current form and try to persuade you that some of the claims in your clip are not supportable.
I can only assume that you’ve never read my blog, although if you haven’t it is very unclear to me where you got my e-mail address. In any case, if you have read my blog, you had to have known that that’s what my answer would be. You make several claims about breast cancer in your clip, some probably harmless albeit dubious, but at least one very, very wrong and very, very dangerous.
It may sound harsh, but I don’t know any other way to say it. None of the things you lambaste Audrey’s oncologist for not having told you about could be expected to have saved her. None of them. That’s why she was not told of them. It wasn’t ignorance; it wasn’t malice; rather, it was that there is no good science to support their efficacy in advanced breast cancer. Certainly, even if they might do any good, their effects are not major. So, as sorry as I am to say this, echinacea would not have saved your Audrey. The story to which you link describes echinacea in colds, not cancer, and in fact there is even one study suggesting that echinacea may interfere with the action of doxorubicin (Adriamycin), a common chemotherapeutic agent used in breast cancer that Audrey almost certainly received at some point in the course of her disease. True, it’s only one study and it was in cell culture, but that’s all there is in the medical literature, other than a study that suggests that echinacea can kill some cancer cell lines in a dish. That’s a long way from doing anything in humans. In any case, there is also a study showing that echinacea can’t increase the activity of vaccines, which would argue against a global immune boost.
Nor is it likely that garlic would have saved her. There is evidence that garlic may prevent cancer, but there is precious little evidence to support the suggestion that it would, even added to chemotherapy, make the difference between survival and death in advanced cancer. Massage would not have saved her, either, although certainly it would have made her feel better; so there would have been no reason for her not to indulge in it as much as she wanted. However, it would be irresponsible of a physician to make any claims that it would prolong her life or increase her odds of living. Exercise may have improved her odds, but based on the study you cite, plus other medical literature, it’s very hard to say for sure. One problem with such studies is confounding biases that are very difficult to control for in epidemiological studies such as the one you cited. Women with breast cancer who exercise more were probably healthier before they got cancer to begin with. It’s very hard to tease out causation from correlation, and it is always good to remember that correlation does not necessarily equal causation. Even so, mild to moderate exercise is probably a good thing for breast cancer patients who have a high enough performance status to do it, but to think that it would have made a difference in Audrey’s case is a stretch. We can’t really know, and certainly the effects of exercise are not in any way miraculous.
All of these things, however, are not objectionable in the least to me. They probably are not harmful and some may even help, although the evidence is often weak or conflicting and their efficacy would almost certainly not be as much as you claim. So I would probably have no problem if a patient of mine used garlic, exercise, meditation, etc., although I might have a problem with echinacea based on that one study.
Regardless of your personal tragedy and apparent anger at the medical system, what I do have a problem with in your clip is your apparent belief that there is a cure, specifically the Hoxsey therapy, that could have saved Audrey and is being hidden from the American public by the medical profession. Indeed, on your webpage you include a link to a page with a glowing description of the Bio Medical Clinic in Tijuana and a lot of conspiracy-mongering in which you claim that “greedy doctors” ran Hoxsey out of the country because he could cure cancer and they didn’t want the competition.
He couldn’t, and of all the things you list in your clip, the Hoxsey therapy is the least likely to do any good. That doctors ran him out of the country on a rail because they feared his miraculous cure is a classic myth promulgated by the “alternative” medicine movement. It’s simply not true. Moreover, I can say with an exceedingly high degree of certainty that the Hoxsey therapy would not have saved Audrey, either.
You ask in your clip why it’s necessary to leave the U.S. to get access to the Hoxsey treatment. I’ll tell you. It’s because the Hoxsey therapy is quackery, pure and simple. It does not work. However, the regulatory environment in Mexico is–shall we say?–considerably more lax than in the U.S., which allows quacks–yes, quacks–to operate large clinics just across the border with impunity. That these clinics exist is not evidence that there is anything to the quackery they sell. In fact, here is what an alternative medicine supporter found when investigating the Hoxsey therapy:
An unpublished pilot study of treatment results at the Bio-Medical Center (and the Livingston Clinic in San Diego, CA, an alternative treatment center founded by the late Virginia Livingston-Wheeler, MD), conducted by the University of Texas at Houston’s Center for Alternative Medicine Research, is currently being circulated for review. The study examined a series of Bio-Medical patient records from 1992. It was funded by a grant from the National Institutes of Health (NIH) through the National Center for Complementary Alternative Medicine (NCCAM) and the National Cancer Institute (NCI).
According to the study, at a point five years after a new group of Bio-Medical Center cancer patients began their treatment in 1992, 11.4 percent of them were alive, 34.9 percent were deceased, and 42.9 percent were lost to follow-up. These results are conservative, but, in contrast to the outcomes of most standard forms of cancer therapy, seem promising. The inability to evaluate a greater number of patients and to contact more of them after five years in order to assess outcomes prevented any definitive conclusions about the Hoxsey Therapy’s ultimate viability from being reached.
Unfortunately, these results are pretty dismal. Indeed, finding only 11.4% of patients alive after five years would be typical for looking at a group of patients with different advanced cancers. Some of them would be expected to survive that long a part of the natural course of their disease, but not many. As for the ones lost to followup, in a study of this type that usually means most of them were dead. Whatever the true case, it remains amazing to me that the Bio Medical Center would consider this a good result. In any case, objectively, it’s impossible to know whether this result is really good, bad, or indifferent without breaking patients and results down by types and stages of cancer, as well as the Karnofsky or ECOG performance status of the patients when presenting, and whether they were being treated for new or recurrent cancer. Absent that information, the results reported are close to meaningless.
Other investigations of Hoxsey patients were no better. I realize you probably won’t believe it because it comes from the American Cancer Society, but I will cite it anyway:
In preparing for the Hoxsey litigation, FDA inspectors investgated the case histories of all the approximately 400 patients whose names had been used in promotion or submitted to the NCI as being cured by Hoxsey. Patients or their survivors were interviewed, and their records reviewed. These cases formed a consistent pattern: One group had been treated for cancer, but did not have it; a second group did have proven cancer, but had received successful conventional treatment before undergoing Hoxsey treatment; and a third group with cancer either died of the disease or were alive with evidence of cancer. Not a single documented case of cure was found.
Studies in mouse tumor models also failed to show an effect from Hoxsey therapy. In brief, it is not correct to say that the Hoxsey therapy was “never tested.” It was, and it failed the test. It is quackery.
No doubt you will consider me overly harsh and unsympathetic to your grief. I am neither. Perhaps you will consider me a deluded tool of the current medical system or a “pharma shill” who doesn’t care that you lost the person you love most in the world. Nothing could be further from the truth. What I am passionate about is seeing that cancer patients get the best care that science can offer and that they are not subject to useless therapies that cannot possibly benefit them. The Hoxsey therapy qualifies as just such a useless therapy.
I understand your anger and grief. However, they are leading you to do something that will not help to bring us closer to a real cure for cancer and, worse, that could lead cancer patients to follow a path that would decrease, rather than increase, their chances of survival. Please rethink your position. There could be a good, even a great, movie in your footage. You could concentrate on the shortcomings of the current medical system. No one, least of all I, will deny that there are serious problems. Clinicians deal with them every day from the “other side.” Overtreatment can be a problem, and, unfortunately, once many solid tumors metastasize, there is precious little that scientific medicine can do in terms of a cure. Neither can “alternative” practitioners. Doctors can, however, usually provide effective palliation.
You keep saying, “There’s got to be a better way.” You’re almost certainly correct. Do you really think that oncologists haven’t asked themselves that very question time and time again? Do you really think they enjoy giving cytotoxic drugs and seeing people die when they can’t save them? Do you really think they would “suppress” a cure if one was found, as Max Gail implied in a video on your site? Remember, we doctors are human, too. Even pharmaceutical executives are human. Being humans in an industrialized nation, we all have about a 1 in 3 chance of developing cancer ourselves. It is close to 100% certain that we have seen, are seeing now, or will see someone we love die of cancer. We are just as passionate about finding cures or, failing that, more effective treatments as anyone. More. We see the suffering cancer causes every day.
So, to conclude, while I agree with you that there is probably a “better” way to treat cancer, it’s not your way, at least not if “your way” involves the Hoxsey therapy. I realize that I probably haven’t convinced you, but I felt that I had to try. After all, you e-mailed me first.
Sincerely,
Orac.
84 replies on “An open letter to Seth Aronson about his breast cancer movie project”
A touching, reasoned, and rational response. It’s probably the best communication I’ve seen coming from the SBM camp to the other. There’s no vitriol, no mockery, just reasoned, sympathetic, passionate argument, backed up by facts.
I weep, because it will likely be ignored.
Outstanding post. I think this should be required reading for anyone that knows or has known a cancer victim.
My only suggestion would be to post the amount of dollars that the US has poured out into the sands of Iraq based on a lie, and compare that to the amount of money we have spent on cancer research over the same time frame.
Warning: If you are not sick already, you WILL be sick after you compare the two.
Excuse me – I hit “post” too soon.
Seth – If you really want to make a movie, focusing on cancer woo, the scumbags that push it and the amount we spend on cancer research is the route to pursue.
Orac, how kind of you to write such a wonderful letter. I so hope the filmmaker listens.
This is an outstanding post and a heartfelt response, Orac. Even if it doesn’t change this chap’s mind, I’m sure it will give many pause for thought through it’s calm and humane reasoning. Thankyou.
An excellent response, Orac.
Well, if anyone could convince a complete stranger that his view on an entire subject he feels passionately about is incorrect, I imagine it would be you. I can only hope it works.
This is heartbreaking. I’m glad you posted the letter– maybe it will give some much-needed perspective to others who are grieving and who might be considering Hoxsey quackery.
Orac, this is really what your site is all about: A statement of fact, in its proper context, cannot be insolent or insulting or mean-spirited. It is what it is.
Evidence-based science — be it in medicine, biology, or astrophysics — lets the chips fall where they may. If a modality or discovery is ineffective or counterproductive, this soon is discovered and dealt with, even in the increasingly-rare instances where there are efforts to hide its ineffectiveness or counterproductivity. Trying to get away with a “Piltdown Man” sort of fraud gets ever harder as the body of solid science grows. (And the main reason that “Piltdown Man” wasn’t officially unmasked right away was because it appealed to British national pride, which was taking a beating as the British empire was slipping away. But exposed it eventually was, and rather thoroughly.)
I have been a quiet reader of your posts, but your compassionate, thoughtful, and reasoned response has prompted me to speak up. Thank you for responding as you did.
That was a beautifully written letter. However, I doubt that it will change his mind. Obviously this man is completely distraught over what he sees as a monumental injustice, and he’s determined not to rest until he can do something to rectify it. Don’t get me wrong, losing someone to cancer like that is an injustice. But life is full of injustices and there isn’t always somebody to blame for them.
This was a wonderful read . . . please do keep us informed if the fellow writes back to you.
Tip of the hat for that response, eminently well handled.
I don’t envy your job.
You keep saying, “There’s got to be a better way.” You’re almost certainly correct. Do you really think that oncologists haven’t asked themselves that very question time and time again?
There ought to be a better way. This is true. And people are working on it. Breast cancer research is a very active topic. And the treatments now are much better than in the past.
In the 1970s, 80+% of women diagnosed with breast cancer (all stages) died of their disease. Now 80+% survive. Why is that? Not because of Hoxsey treatment, appealing as the idea of a simple, natural cure is. Rather, because of painstaking work by a number of oncologists, the selfless bravery of cancer patients willing to volunteer for clinical trials that demonstrated how to better treat cancer–and eliminated ideas that just didn’t work, and the efforts of patients, doctors, and family members to obtain funding for research and treatment of breast cancer.
Chemotherapy is in no way fun. The best thing I’ve ever heard anyone say about it was, “Not nearly as bad as I was expecting.” But the side effects of chemohtherapy have been reduced over time as well: the invention of good anti-nausea drugs, hematopoietic stem cell stimulants, and even natural looking wigs have all helped cancer patients tolerate chemotherapy with relative ease (compared with previously). And, sometimes, not always, but frequently even, it works. My step-mother-in-law is an 8 year survivor of lymphoma, a 3 year survivor of recurrent breast cancer. And she is healthy. Thanks not to “alternative medicine” but to the annoying, sometimes dangerous, never fun, but often effective treatment with chemotherapy, radiation, and surgery.
There should be a better way. And there will be. Improvement is incremental, with better survival and easier therapies coming slowly, gradually, not as a sudden “cure”. This is how it has to be because cancer is not a single disease. Breast cancer is not a single disease. It’s going to be slow, frustrating work. But it’s the only way that we’ll have a hope of a real cure that will truly help people. And not just make Hoxsey’s heirs rich.
No kidding, Terry. Not to speak for Orac, but he’s spoken of cases I can’t imagine handling. I don’t know how he gets through it. To face someone who is going to die thanks to their denial…and how far they sometimes take it…I’d be a wreck.
I’ve lost two family members to breast cancer, one due entirely to denial and the other probably so. It was only the personal horror of those experiences, and the desire to spare her family the same, that saved my denial-prone mother’s life.
Seth should also check this out:
http://content.nejm.org/cgi/content/full/329/18/1289
This is an analysis of the survival of childhood leukemia at St. Jude’s Hospital. The curve demonstrating the improvements in survival is astonishing.
In the early 60s only 9% of children survived their leukemia long-term. Contrast that to the survival of kids treated in the late 80’s – better than 60%. That’s a lot of kids cured, and not by Hoxsley. And, that’s only one hospital.
P.S. The rates are even better now.
I don’t envy your job.
I don’t have orac’s job exactly–I’m a medical oncologist and hematologist, really more of a hematologist–but I think you’re misjudging what oncology is actually like. I find oncology rewarding. An oncologist can almost always do something to help the patient, even if it’s only making sure that they spend their last days without pain. And more often than you might think you can help the patient survive their disease. Adjuvant chemotherapy reduces the chances of recurrence for quite a lot of diseases, including breast and colon cancer, two very common forms of cancer. Some cancers can be cured even when they are metastatic (i.e. have spread through the blood to distant organs): testicular cancer is nearly 100% curable in compliant patients. (One amusing finding of a recent review of cancer survival is that German men with testicular cancer actually had a slightly BETTER 10-year survival than the age and sex matched general population. Not that that was anything other than a statistical fluke: testicular cancer is not really good for you–it’s just not as bad as you might think if treated properly.)Hodgkin’s lymphoma has about a 95% cure rate in younger patients. Non-Hodgkin’s lymphoma is hovering around 50%.
Then there are the cancers that can’t be cured but can be treated. Multiple myeloma is probably going to be reclassified as a chronic disease because the current treatments are prolonging survival so much–though cures are still rare. Breast cancer patients with metastatic disease may survive for years with their cancer. Years that they enjoy and feel well, not years full of treatment related misery.
Yes, there are heartbreaking cases. There are always heartbreaking cases in medicine. Do you think it’s any easier to watch a young woman die of uncontrolled diabetes and multiple complications than to watch one die of breast cancer? Trust me, it isn’t. If anything, the feeling of “this shouldn’t be happening” is stronger because we think we know what to do with diabetes.
The bottom line is that it is not hopeless. There is room for a good deal of hope in oncology. But there has to be realism too. Not all cancers are curable and not all stages of cancer are curable. No one is hiding a cure. Believe me, if there were a cure and a conspiracy to hide it, I would not be in on it. Quite apart from the fact that I have a big mouth and an anti-authoritatian streak, I simply wouldn’t be able to look someone in the eye and say “we have nothing that can cure you” when we did have something. Doctors aren’t, for the most part, naturally good at keeping secrets. If we were there’d never have been a HIPAA act–the need just wouldn’t be there. If the Hoxsey treatment were useful, there would be a flood of referrals to the Hoxsey clinic, loss of income be dammed.
P.S. The rates [of long term survival after childhood leukemia] are even better now.
Yep. Over 60% for ANLL and over 90% for ALL.
A pitch-perfect response, Orac. I hope it will at least prompt Seth to think about the content of his film, even if it doesn’t change his mind outright.
I’m very sorry about your mother-in-law. I hope she is as comfortable as she can be at present.
There’s another issue. Forty years ago, the vast majority of breast cancer patients got a radical mastectomy, a disfiguring and nasty operation. Over time, that evolved to a modified radical mastectomy, which was somewhat less disfiguring but still a mastectomy. Then treatment evolved to a lumpectomy with removal of most or all of the axillary lymph nodes followed by radiation therapy. Most women with breast cancer could keep their breast an still have the same chance at long timer survival. However, removal of the lymph nodes led to long-term unpleasant complications, such as lymphedema and numbness under the arm, which spurred a search for less invasive treatments. Finally, in the mid- to late 1990s, the concept of sentinel lymph node biopsy was developed. Now, most women get a lumpectomy with a sentinel lymph node biopsy, which samples only one to a few lymph nodes, greatly decreasing the chance of lymphedema. Only women with tumor in their sentinel lymph nodes go on to have the rest of their lymph nodes under their arm removed. In general, only 1/3 to 1/4 of women with breast cancer require mastectomy these days.
So, in thirty or forty years, scientific medicine has gone from the vast majority of women undergoing highly disfiguring removal of their breast and underlying muscle for their tumors to now, when the majority of women undergo lumpectomy and the removal of less than three or four lymph nodes under their arm–most of the time only one or two. The reasons for this are multiple. First, back when Dr. Halsted developed the radical mastectomy, there was no chemotherapy and no radiation. Surgery was the only cure for breast cancer, and, given how breast cancer spread to the lymph nodes, it was not surprising that the science of the time suggested that the more radical operations had a better chance at a long term cure. After all, there was no chemotherapy or radiation to “clean up” microscopic deposits of metastatic cells that might have escaped the breast. Radiation therapy decreases the rate of local recurrence in the breast after lumpectomy, which without radiation is unacceptably high (around 1 in 3), while chemotherapy given after surgery increases survival as well. More importantly, there has developed a better understanding of breast cancer biology. We now have targeted therapies, be they against the estrogen receptor (Tamoxifen or aromatase inhibitors) or the HER2 oncogene (Herceptin). Even the survival of patients with stage IV cancer has improved considerably, so that a significant number of them now live more than 5 years with relatively good quality of life.
Do we have a long way to go? Absolutely. Although we do quite well with early stage breast cancer, with 90% being able to expect long term cancer-free survival, patients like Audrey (and my mother-in-law) make it absolutely clear that we do need to find a way to do better, as does the simple fact that we cannot cure stage IV breast cancer. But it is science-based medicine, not quacks like Hoxsey, that got us to where we are now, and it is science-based medicine that will allow us to do better in the future.
Orac, I think that your comments, Dianne’s comments, and Dr. Steve’s comments would make a nice post all by themselves.
Here’s how I’d do it:
1) Find a statement by Hoxsey to the effect that modern medicine can’t cure cancer.
2) Post your rebuttal evidence.
3) Post evidence that Hoxsey’s treatment don’t help anyone other than him — and only to help his pocketbook.
Orac, prepare to be quote-mined. How much do you want to bet this shows up somewhere:
A skeptical cancer surgeon wrote to me, “… concentrate on the shortcomings of the current medical system. No one, least of all I, will deny that there are serious problems.”
Or not. We shall see.
“Orac, prepare to be quote-mined.”
More for the cut-and-paste-minded:
“…these results are pretty dismal…close to meaningless…it comes from the American Cancer Society…it failed the test…
science can offer…useless therapies that cannot possibly benefit…there is precious little that scientific medicine can do in terms of a cure…We are…failing…the suffering…every day.
So, to conclude…I agree with you that there is probably a “better” way to treat cancer, it’s…the Hoxsey therapy.”
My background excerpting reviews for movie ads is coming in handy. 🙂
DB,
That’s hilarious. This should be a regular feature. =D
Good one, Orac. I’m really impressed. Really.
a good letter, written for a good reason.
Somehow I doubt it will have the needed effect, but it was worth doing.
This just struck me as terribly sad:
Thank you.
fantastic letter orac.
grief is a big motivator to great action.
i think that the points stated here should certainly be included in the movie. perhaps an interview with orac himself! now that will be awesome.
so sorry about all your losses, orac and seth.
He keeps saying:
Why does there have to be?
Really respectful. Really informative. Thank you for sharing the original note and your response and thank you for all of the women who are alive today because of your skill and knowledge.
“He keeps saying:
There has to be a better way.
Why does there have to be?”
Because to believe otherwise is to believe humanity will never find a better treatment for cancer than we currently have. A better way will be found, we just haven’t discovered it yet. Most people refuse to believe there will be no way to treat cancer, ever, that is better than what we have now.
It would be nice, but there is no guarantee.
True, but nevertheless, belief that a better way will be found is necessary (though admittedly not sufficient) to make any meaningful progress.
Khan wrote:
Yeah. Me too.
It’s probably not possible to say this without sounding harsh, but it’s like he wants both of them to be simultaneously guilty and guiltless. “Relapse” into fast food? Despite his best efforts?
It’s like he’s saying they “gave in” to the cancer. That’s profoundly sad on many more levels than I can adequately express.
When I was on chemotherapy, I didn’t have much appetite. We tried to eat as healthy as possible, but the thought of many foods literally made me sick. So I ate what I liked. When I started to have a sore mouth, I ate pudding, soup, Ben&Jerry’s ice cream (my oncologist suggested this as apparently it has more calories than many other brands) with whipped cream, lots of milk and yoghurt with soft fruit.
We had an aquintance who kept telling me I should not eat like because it was lacking in vitamins and might very well cause my cancer to come back. She also said that this was the time to take responsability for my own health (which in fact I thought I was doing), which I had “already seriously compromised by agreeing to take chemo.” She kept going on and on about it and it depressed me so tremendously that at one point we told her to stay away and leave us alone.
These people really make you feel it’s entirely your own fault whether you live or die. And when you die, well, you just haven’t tried hard enough. Apart from the fact that what they are saying simply is not true, I think it is a very cruel and heartless attitude towards very sick people.
That’s not a new story. In fact, it’s been the subject of discussion for literally thousands of years.
The thing to understand is that it’s not about you — it’s all about them. They’re trying to maintain their own security, believing that they’re in control of their own fates and if they do all the right things [1] what happened to you can’t happen to them.
[1] Coffee enema on Tuesday, a two-liter juice drink Wednesday, seventeen different pills every morning, ….
I know. You’re absolutely right. I kept telling myself that too, but somehow that doesn’t always help, maybe because of the arrogance and smugness that often goes with it, which I find extremely irritating. It never ceases to amaze me though how completely fact-resistant they are. But then, they would have to be, wouldn’t they, to keep their world intact.
Indeed. The Alties are psychologically indistinguishable from the deeply religious, or any number of other groups whose beliefs are in conflict with reality. Whatever specific manifestation this form of insular thinking takes, I think the root of it all is a deep core-wrenching fear of losing control, and of mortality itself, as DC sessions opined so wisely above. Your odious acquaintance with the unsolicited dietary advice was undoubtedly scared shitless by your disease–not scared for your well-being, necessarily, but of the general helplessness that a grave illness can manifest. Believing that consuming a homeopathic remedy, cleansing the colon, activating latent DNA, saying 150 novenas, wearing spiritually charged undergarments, etc. are all talismans against the inevitable truths of the human condition: pain, death, bad things happening to good people. Powerlessness against these truths seems to drive all sorts of extreme beliefs and denialist behavior.
@ Danio & D.C. Sessions,
Thank you, both of you.
And Orac, you as well, for your letter to Seth.
Can he really believe that a doctor in his position (watching a soulmate die) would withhold a cure for cancer? To protect himself or “Big Pharma”? Or that a doctor would watch his/her own child die?
That’s… insulting and offensive to every doctor who has faced those situations. What doctor wouldn’t be willing to destroy his career to save his own child?
No, it’s even worse: they give themselves and their loved ones the treatments that work: hoxey, homeopathy, spiritually charged undergarments et cetera. These are withheld from the general public because otherwise the doctors and big pharma would be robbed of their generous incomes. That’s what the conspiracy is about, you see?
Exactly, and doctors also don’t vaccinate their own kids because only they know the truth about the Big Pharma conspiracy to give everyone autism and subsequently reap the financial rewards of all those expensive lifelong autism treatments…oh, wait….
Methinks you have seen the light 🙂
Beautifully written.
If he replies, will you let us know?
Beautiful, Orac.
Dianne: You really hit the nail on the head with your comment. The “c word” changes the dialogue for most people because they see it as the worst thing possible. Also, if you spend enough time online with a healthy curiosity about all things human, you’re bound to come across some rather nasty images related to cancer. Seeing pictures of tumors might make someone’s idea of cancer almost gorgon-like. Those pictures don’t exist in the same proliferation for things like clotting disorders, for example; you get all kinds drawn pictures with the odd bad case of livedo reticularis. Nothing too terribly scary, in other words. So, my question is: Why is that? Is it because cancer is more prevalent than other diseases? but it’s not, so… why?
I think this is because cancer is a potential death sentence. It takes 10 years, with slow-growing cancers sometimes even 12, until you no longer need regular check ups. Every time there is stress, because of the fear of metastases. Some forms of cancer, breast cancer for instance, are notorious for metastasizing years after the first diagnosis and metastasized cancer means death (wit a very few exeptions). A colleague of mine was confronted with metastases more than six years after her initial treatment (mastectomy, lymphe node dissection, chemo). She has been living with bone metastases for 4 years and recently it was found that her lungs and her liver are also affected. She may have another year, maybe two, but probably less now.
I think this is the reason people are so scared of it.
Forty years ago, the vast majority of breast cancer patients got a radical mastectomy, a disfiguring and nasty operation. Over time, that evolved to a modified radical mastectomy, which was somewhat less disfiguring but still a mastectomy. Then treatment evolved to a lumpectomy with removal of most or all of the axillary lymph nodes followed by radiation therapy. Most women with breast cancer could keep their breast an still have the same chance at long timer survival. However, removal of the lymph nodes led to long-term unpleasant complications, such as lymphedema and numbness under the arm, which spurred a search for less invasive treatments. Finally, in the mid- to late 1990s, the concept of sentinel lymph node biopsy was developed. Now, most women get a lumpectomy with a sentinel lymph node biopsy, which samples only one to a few lymph nodes, greatly decreasing the chance of lymphedema. Only women with tumor in their sentinel lymph nodes go on to have the rest of their lymph nodes under their arm removed. In general, only 1/3 to 1/4 of women with breast cancer require mastectomy these days. (my bolding)
That’s something you should have emphasised really strongly in your reply, Orac.
This guy is making a film that shows his beloved with her breasts (before cancer treatment) and totally breastless (after cancer treatment). Which is virtually screaming “Getting conventional treatment for breast cancer means having your breasts sliced off!”
As you’ve pointed out in several previous posts about quack cancer treatments, fear of losing their breasts is what causes too many women to avoid effective treatment. It can never be pointed out too often that mastectomy is the last line of treatment.
@ Sophia8,
You information is correct and it would be a good thing if women realise that breast cancer does not always mean that your breasts have to be “sliced off.”
However, having said that, there still is al relatively large number of women for whom mastectomy is necessary. But even then, it is not the end of the world.
I am one of those 1/3 of 1/4 of women. Although my tumor was still small, I had DCIS in the greater part of my breast, so it had to come off.
You say in your post that mastectomy is a nasty and disfiguring operation. Actually, I did not find it particularly nasty. It was painful but not unbearably so and the pain wore off very quickly. I was operated on a Friday, went home on Monday (with one drain), took a long walk on the next Friday and bought new bras the Saturday two weeks after my operation.
My arm felt like it had been burned and they told me to touch it frequently and not too squeamishly, which I did and the pain wore off in about 6 weeks. I did my exercises, had physiotherapy and can move my arm just as well as before. I was lucky though, I only had chemo afterwards, no radiation.
I have not met one women in hospital who was deeply depressed about losing a breast. Some wanted reconstructive surgery, others didn’t. A few felt disfigured, but most of them did not. Many people have told me how sorry they are for me because I am now maimed and disfigured. But I don’t feel like that at all and I know many women don’t.
Maybe we should stop talking about mastectomy as though it is the worst thing that can happen to a woman and stop talking in terms of “maimed” or “disfigiured.” Ofcourse it’s not something to make light of, but it’s not the worst thing in the world either. I would like to see more people like Christina Applegate, to show people that there is a life after mastectomy, that women can still be happy, look good and enjoy life – with or without reconstructive surgery. Because it is fear that the quacks feed on.
very good sites
This statement struck me as quite ironic, in light of what can result in the alternative realm.
You are absolutely right about the need for changing the stigma of mastectomy. However, I’m guessing one would have to back way up and deal with the ‘ta-ta’s=femininity’ meme that pervades our culture in order to be really effective on the mastectomy issue. I haven’t bothered to look it up, but has anyone ever done a study on compliance with mastectomy recommendations, (or maybe just satisfaction with the outcome of mastectomy?) in the US vs. in cultures where breast-worship is less prevalent?
I agree you have a big point there, I have no idea how big the impact is of “breast-fixation.”
I don’t know if studies like the one you suggest have ever been done, on a big schale that is. A women’s magazine in the Netherlands did a survey some years ago among approx. 150 women and their husbands, asking how they felt about themselves and their relationship after mastectomy. About 15% had some kind of psychological problems, the others had adjusted well and had no trauma or felt inadequate or disfigured in any way. But then, this was not a scientific study in any way.
JennyjO: I was actually quoting Orac in my post – all the italic stuff is from the OP. If you search through his previous posts on alternative cancer treatments, you’ll find at least one where he describes a woman who avoided getting treatment because she thought it would lead to mastectomy.
I’m not saying that mastectomy is a disfigurement – I wish that more women who’ve had it would come “out” and stop wearing fake breasts. And I know that very few women feel that mastectomy “disfigured” them – but that’s after it’s been done.
I’m quite sure that a number of women do fear that they might lose their breasts when they first get diagnosed with breast cancer. I was arguing against anything (such as this proposed film) that encourages this fear.
I wonder if some women are afraid of a mastectomy because they fear their SO will no longer love them.
I found it a bit weird that he mentioned her bra size early on.
“I’m not saying that mastectomy is a disfigurement – I wish that more women who’ve had it would come ‘out’ and stop wearing fake breasts.”
Isn’t that sometimes dangerous? I mean, think of another group of people who get mastectomies – transsexuaol men. If they come “out” as having been born with female bodies, they put themselves at higher risk of discrimination in the workplace, unemployment, and even violence. I can understand a breast cancer patient/survivor not wanting to come “out” about her mastectomy because she’s afraid of being mistaken for someone between two female-to-male sex-change surgeries and being targeted by the same thugs who target transsexuals.
Sophia8,
I know, I’m sorry if my comment implied otherwise and I know women are scared of losing their breasts. But once the’re gone, to talk of maiming and disfigurement somehow doesn’t help very much, although I know it’s usually meant well.
I must admit I’m quite sensitive to words like that, as well as many of my fellow-patients for that matter. I suppose that now and then we’re somewhat less sturdy than we care to admit. 🙂
I also realise it’s difficult for people around us; we want respect and appreciation for what happened to us, but we also want people treat us just like everyone else. And when they do, we tend to feel neglected. In Dutch we say something akin to: you can either do it always wrong, or never right.
Still, I think it would be a good thing if we could learn to think obout these things in slightly different, less breast-related, terms, for many women don’t really like to be identified with their breast(s)to such an extent. “Coming out,” as you call it, might help, especially by celebrities. In the Netherlands we have a few that have, but I’ve never heard of it in the US.
@ Khan,
So did I – the mentioning the bra size I mean.
@ Laura,
I don’t think that would be a problem; as far as I know, transsexuals don’t grow one breast after another – they come as a pair, so to speak.
I have “come out” btw, because the prothesis sometimes hurts, and it was no big deal really. Most of my colleagues know I had breast cancer, I wear nice clothes and make myself look presentable and most of the time they don’t even notice when I don’t wear my chicken fillet. If they do, they know why I sometimes I don’t wear it. And when someone stares at me who doesn’t know, I just can’t be bothered.
@ Danio,
I followed the link in your comment and read the woman’s story. It is terrible, truly, truly terrible.
Right now, there is a woman in Holland dead-set on following this path, she has a blog on which she keeps a diary. Her diagnosis was just over a year ago, so no great problems yet, although they are sure to come. We have tried to dissuade her more than once, but to no avail, on the contrary it seems. It’s absolutely maddening.
“@ Laura,
“I don’t think that would be a problem; as far as I know, transsexuals don’t grow one breast after another – they come as a pair, so to speak.”
Thanks for the reminder, and I stand corrected! As far as I know, transsexuals going in the other direction don’t remove one breast after another either.
“I have ‘come out’ btw, because the prothesis sometimes hurts, and it was no big deal really. Most of my colleagues know I had breast cancer, I wear nice clothes and make myself look presentable and most of the time they don’t even notice when I don’t wear my chicken fillet. If they do, they know why I sometimes I don’t wear it. And when someone stares at me who doesn’t know, I just can’t be bothered.”
I’m glad that your colleagues are decent people, and I’m pissed off at whomever designed the prothesis (shouldn’t things like that never hurt?). As for staring at you, that’s just plain rude.
You’re very kind, thank you 🙂
The protheses are quite good actually, but sometimes your skin gets irritated or the prothesis presses on the ribs, which can be painful after some time. It’s a consequence of the operation, they try to take away as much tissue as possible, as Orac explained also. The result is that you have just a thin layer of skin and not much else, which makes it rather vulnerable. I’ve been told this is also a reason for some women to go for reconstructive surgery.
I’m sorry if all this sounds very dramatic, because in fact it isn’t.
Jennyj0 wrote:
It’s kind of double-edged sword, isn’t it? My best friend had a mastectomy a few years ago, and she felt guilty for wanting reconstructive surgery because she thought she was being frivolous and vain. She kept saying things like “I know it doesn’t matter and it’s not the end of the world…” and “It’s not like it’s my arm…” It wasn’t that it was the worst thing is the world, but that doesn’t mean it was easy. She cried a lot about it. But she also made a lot of morbid jokes about and now calls it her “Frankenboob”.
On the one hand, breasts aren’t essential, and are thought of by so many (men and women) as toys or ornaments. But on the other hand, it’s a part of your body! Like most people, I cherish all my body parts, even the ones I think are sub-par. I would feel disfigured if I lost anything, and I wouldn’t want anyone to pooh-pooh me about it not being important, or to think that I was being vain if I wanted to disguise it. Or even if I did not care to advertise my illness to the world for the rest of my life.
I know that’s not what you are doing, and I certainly applaud any woman who feels comfortable enough to go without a prosthetic or reconstructive surgery, but the reality is that this won’t be the case for everyone. And I would worry that we could give the impression that women who do seek those options are somehow being vain or silly if we do not recognize how difficult and even traumatic it can be for some people.
Like you say, we shouldn’t call it “disfigurement”, but we still have to appreciate that some women are going to feel that way about it.
@ Leni,
You are right, you might call it a double edged sword, it is a very fine balance indeed, I realise that.
I don’t think women who go for reconstructive surgery are vain and my intention is not to pooh-pooh any of it, on the contrary. It’s just that sometimes I feel as if all the attention goes towards the breasts instead of the woman. Ofcourse women should do what they want to do, have a reconstruction or not, wear a prothesis or not, whatever.
I don’t want to advertise my illness, but I see that many people are so scared of breast cancer, which in their mind often equals mastectomy, that they make the wrong decisions, wait too long before seeing a doctor, go to quacks who promise them that they don’t need surgery, keep telling themselves that it will go away by itself provided they do the right things and waste valuable time, sometimes to such an extent that it’s too late even for a mastectomy and they die needlessly. It’s these things that I cannot bear and then I want to try and tell people that it’s not always as grim as it seems.
“You’re very kind, thank you :-)”
You’rwe welcome! 🙂
“I’m sorry if all this sounds very dramatic, because in fact it isn’t.”
Don’t be sorry! Besides, it didn’t sound very dramatic.
“It’s kind of double-edged sword, isn’t it? My best friend had a mastectomy a few years ago, and she felt guilty for wanting reconstructive surgery because she thought she was being frivolous and vain. She kept saying things like ‘I know it doesn’t matter and it’s not the end of the world…’ and ‘It’s not like it’s my arm…’ It wasn’t that it was the worst thing is the world, but that doesn’t mean it was easy. She cried a lot about it. But she also made a lot of morbid jokes about and now calls it her ‘Frankenboob’…
“…Like you say, we shouldn’t call it ‘disfigurement’, but we still have to appreciate that some women are going to feel that way about it.”
I agree with you and Jenny0. Some of the “love your body the way it is…” rhetoric is good but meanwhile some of the other “love your body the way it is…” rhetoric sure implies “…and stop loving that way ASAP if your body becomes some other way!!!”
The only change I would make to your otherwise heartfelt and thoughtful letter is the word “touched,” as in “touched by cancer.” It’s become an instinctive reaction of mine to read the use of “touched” as an indicator the speaker has never experienced a loss by cancer, which I know is not the case for you. There’s no point softening the language when referring to cancer. I, for one, felt like I was being held down while thugs beat my mother to death.
As for the “suppression” allegation, I worked in pharma for five years. The suggestion that anyone in pharma is sitting on a cure for something, for any reason whatsoever, is offensive in the extreme. I don’t believe I need to explain why.
What I really really would like to understand is what makes people think like this. Maybe it is fear, but I often think that can’t be all. After all, there isn’t anyone who isn’t afraid of serious illness, especially cancer, and yet we don’t all think like that. I just can’t get my head around it.
Orac, that was a beautifully-written letter that said exactly what needed to be said. I hope he listens, but whether or not he does, the letter was the right thing to do. If not him, you will at least reach others.
And I am sorry to hear about your mother-in-law; at least, with you as an advocate, I’m sure that she is getting the best care possible to keep her as pain-free as is possible in her remaining time. I always wish there were more we could do; unfortunately, we cannot always.
in the US vs. in cultures where breast-worship is less prevalent?
Out of curiousity, can you name some cultures where breast-worship is less prevalent than in the US? And how you identified them as having less breast-worship than the US?
Tracy W:
Good questions. Subjectively (as a breast-bearing US citizen), I’d say we’d be hard pressed to find a culture less breast obsessed than the US, based on various data on general body image perceptions/preferences, body (and specifically breast) presentation in the media, advertisements, etc. I have read no primary studies on these topics, though–only various opinion pieces that refer to (but do not cite) such studies. I am not a physician, and I have no first-hand experience with breast cancer so my interest here is quite tangential. I would love know whether my predictions on the relative frequencies of mastectomy/reconstruction/cosmetic surgery between the US and any other industrialized country have been quantified in any way, but don’t have time to research this in any meaningful way at present.
I think these are interesting questions, but perhaps I am the only one. If Orac has time, I would be keen to hear to what extent these issues are discussed/presented at any international breast cancer conferences he may have attended.
Thanks hacII
jennyj0:
I just wanted to say thanks for sharing so much of your personal experience here. It’s been really enlightening for me, and I wish you the very best.
Re: the SBM post I linked to, I agree-it is totally harrowing story, and tends to shut people up rather quickly when they ask: ‘but what’s the harm [in CAM]?’
Re: the ‘fear’ thing–I share your frustration in not understanding how people can be this obtuse, but I’ve seen enough people go through (and survive, or not) stressful life events to have observed that for a lot of people, fear of the unknown (which I would argue is at least partially distinct for a specific fear OF death) is the worst thing imaginable. They are thus much more at ease (relatively) believing IN something, anything, no matter how nutty, than in accepting that there are unknown–or unknowable–circumstances in play beyond their control. This is of course, a generalization to which there are undoubtedly many exceptions, but as I seem to be on a wild-assed prediction bender here I’ll put this forth as the most straightforward explanation for the phenomenon under discussion 🙂
I find it very hard to accept that we cannot seem to be able to help them, because apparently the best that conventional science/medicine has to offer – chances – is not enough for them.
In an earlier post you said that the belief IN someting, anything, are all talismans against the inevitable truths of the human condition: pain, death, bad things happening to good people. Powerlessness against these truths seems to drive all sorts of extreme beliefs and denialist behavior.
But what can we do? These ARE facts of life, whether we like it or not and in my opinion it would be unethical and totally lacking in respect towards patients if we pretended otherwise. Yet, it doesn’t seem a lot, compared to what the quacks have on offfer: no harsh therapies, no cancer, no death. Looking at it that way, I can almost see myself understanding why some people feel that conventional science has pathetically little to offer to them. Were it not for the fact that it’s all just a bunch of lies.
This short series of posts expresses the grief and anger of someone who has lost her husband to cancer better than anything I have seen.
As to Mexico and cancer treatments, can anyone forget Krebiozen
My sister in law in the UK was diagnosed with breast cancer. Sadly she and her husband had previously read a quack cancer conspiracy book and were suspicious of science/evidence based medicine. My sister in law’s oncologist encouraged and supported her decision to seek INITIAL treatment at a Laetrile clinic in Tijuana. This clinic also used blood oxygenation scams and touted an organic vegetarian diet as part of there cancer cure. I did what I could to encourage competent medical treatment which caused some real damage to our relationship. Thankfully my sister in law eventually had surgery, chemo and radiation. But amazingly she has returned to this clinic in Tijuana for follow up Laetrile treatments, and again with the support of her oncologist.
Sometimes, regrettably, medical doctors are part of the quack CAM/IM problem. Much harm that happens because of CAM/IM could be avoided if the medical societies, medical schools, state licensing authorities, the FDA and legislatures made rules and laws based on the best available evidence that would result in sanctions and discipline of MD’s who recommend harmful and useless CAM/IM. Orac can be in charge! 😉
He keeps saying:
“There has to be a better way.
Why does there have to be?
Posted by: khan | January 16, 2009 9:52 PM”
WHY??? beacuse people are still DYING that’s why… we send men to the moon ( apprently) yet we still have no cure for cancer… thats why Khan, I hope for your sake you have never lost anyone close to you as a result of cancer perhaps that is why you posted such an ignorent comment… note I said your comment was ignorant, not You!
“it is science-based medicine, not quacks like Hoxsey, that got us to where we are now, and it is science-based medicine that will allow us to do better in the future.” Posted by: Orac | January 16, 2009 12:57 PM
Do you mean its gotten us to 1 in 3 people having/dying from cancer at some point in their lives?? or that metastatic cancer is still in-curable by way of conventional medicine? or that chemo and raditaion can in fact cause secondary cancers throughout the body.?
is this really the best we have…? you agree e that conventional medicine is by no way perfect and has its shortfalls but you fail to clarify or make examples of exactly what the imperfections are …
Hang around and read Orac for a while. He discusses limitations in medicine all the time. By the way, that’s a fundamental difference between a quack and a real doctor: the real docs know and own up to their limitations.
Apparently??
Are you saying that you have doubts as to whether or not we’ve landed men on the moon?
I really don’t think I should respond to anything else, but….
I’m not knowledgeable enough about the state of cancer care to say whether your list constitutes the “best” of what we have, but I can say that it’s a damn sight better than the alternative.
natalie said “yet we still have no cure for cancer”
Depends on what kind. I know of women who are still alive several years after being diagnosed with breast cancer. The barber my husband goes to has a son who had leukemia over ten years ago, he is a young man now.
The problem with your 1/3 having and dying from cancer is that most of them are over 65. You are more likely to get cancer the longer you are alive.
Please answer this question: What is the average age of death for both men and women now versus fifty years ago?
Has it gone up or down?
“1/3 having and dying from cancer is that most of them are over 65. You are more likely to get cancer the longer you are alive.”
Could you please direct me to where you found this information?
I am only speaking from personal experience, but I have known over a dozen people in my short lifetime who have had and unfortunately mostly died from cancer. Out of them there was ONE over the age of 65.
I have sat in a chemotherapy ward where the majority of patients were under the age of 65.ironically both my mum and her best friend were just 2 of the 20 or so patients in there at a time…both of them well and truly under the age of 65
The plural of anecdote is not data… Some data here:
http://www.disastercenter.com/cdc/
Hi,
There are alternatives. If the only care offered is palliative, why not incorporate or change to another path?
Why would you go down the route of cytotoxic chemicals when it’s not for a cure, but an extended life (which is debatable) through chemo.
I do believe trad medicine has its place, but when it doesn’t work, try something else.
The Budwig Protocol is a diet that no one gains financially from. There are major successful studies being conducted on the benefits of flax alone, why wouldn’t omega 3 in its most bioavailable form offer support to the cell structure?
Try the Budwig, it works, I know.
Michele
Michele: