An open letter to Seth Aronson about his breast cancer movie project

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-fiancรƒยฉs 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.