Wednesday, April 13, 2005

The Orange Man

The first thing that struck me about him was that he was orange.

It wasn't a shade of orange I had ever ever encountered before in a patient. It was a yellowish orange, an almost artificial-looking color. At first I wondered if he was suffering from liver failure with jaundice, but this orange was not the right color, and his sclerae were not yellow. I also considered whether he was suffering from renal failure, but the orange color of his skin didn't quite match the rather coppery color that some patients suffering longstanding renal failure necessitating dialysis sometimes acquire. I was puzzled. His chart said that he was being admitted for surgery for rectal cancer. So I sent the intern in to get the story, do the history and physical, and get him all plugged in for his bowel prep. (Yes, believe it or not, there was a time when it was not all that uncommon for patients to come into the hospital the night before their surgery in order to undergo a preop bowel prep, rather than being forced by their insurance companies to undergo the torture of drinking four liters of the purgative known as Go-Lytely--a misnomer, if ever there was one!--at home and spending the next several hours having to rush periodically to the toilet, waiting in vain for the liquid exploding out of their hind end to run clear.)

Ten years ago, I was in my chief resident year in general surgery. I was doing a rotation as chief of one of the general surgery services back at the mothership (the University Hospital). This particular service had a lot of colorectal surgeons on it. Consequently, we saw a lot of good, solid general surgery involving the colon, one of the organs a lot of general surgeons like to operate on the most. Naturally, a lot of this surgery was colorectal cancer, given how common this variety of cancer is. It was while I was doing this rotation that I first encountered the Orange Man, as I dubbed him in my mind (although I never called him that out, not even to the other residents, who might have found it amusing).

When rounding with one of my surgery attendings, I learned the sad tale of the Orange Man. He was a man in his early 50's, who had first seen my attending over a year before. He had suffered BRBPR (which, non-medical types, stands for "bright red blood per rectum") and been referred to a gastroenterologist, who examined him and did a colonoscopy. This revealed a rather low-lying rectal cancer. He was referred to my attending, who evaluated him, found that there was no evidence of metastasis to the liver or elsewhere on CT scans, and recommended surgery. Although the tumor was relatively low, the attending thought there was a very good chance he could do a sphincter-sparing procedure, known as a low anterior resection, possibly with either a very low anastomosis or a coloanal anastomosis. However, the patient would have to be prepared for the small possibility that it might require an abdominoperineal resection (APR) to remove the tumor. (An APR involves taking not just the rectum, but the anus as well. It necessitates sewing the anus shut and leaving the patient with a permanent colostomy. APRs are necessary for very low-lying cancers or cancers that can't be removed with an adequate margin of normal tissue between the tumor and the anus or tumors low enough to involve the anal sphincter mechanism.

Scary news indeed. I can only imagine the reaction of the Orange Man upon hearing the news. He was probably terrified. Certainly, I'd be scared if it were me. Certainly, I wouldn't want to have a permanent colostomy if it wasn't possible to get the tumor out with a clean margin and still save my anal sphincter. No one, and I mean no one, does. But, if it had been me, I'd still have undergone the surgery, because I know it would be my best shot at long-term survival. I'd take the small chance that it might be necessary to have a permanent colostomy.

The Orange Man, unfortunately, made a different choice. Convinced that he could find another way, he sought "alternative" medical treatments. He somehow ended up in New York City, where he undertook a regimen that involved coffee enemas and megadoses of carrot juice. There he returned periodically for over a year, all the while purging himself with coffee enemas, consuming megadoses of carrot juice and vitamin supplements, and undertaking various other "alternative" treatments for a potentially curable cancer (and, I guess, trying to ignore the increasingly orange tint his skin was developing).

Coffee enemas? I couldn't believe it. I had never heard of such a therapy before. What possible use could coffee enemas have against cancer, I wondered. The only use for them I could imagine at the time was possibly as a more rapid (and highly disgusting) method of delivering caffeine into the bloodstream.

I didn't know about it at the time, but now I can speculate that the "therapy" the Orange Man had chosen was very likely some variation of the Kelley/Gonzalez treatment. The basis of this "therapy," developed first by Max Gerson, MD back in the 1940's and 1950's, then continued by William Kelley, DDS in the 1960's, and still practiced today by Nicholas Gonzalez, MD, is a belief that all cancers come from a deficiency of pancreatic enzymes, which supposedly allows cancer cells to grow. By the "concept" behind this, cancer grows and metastasizes because there is lack of cancer-digesting enzymes in the body. The solution is, supposedly, is to get pancreatic enzymes to the place where cancer is growing, in a concentration high enough to stop growth, but not so high as to cause too rapid production of "toxins" from tumor breakdown. Consequently, the treatment consists of "detoxification" with coffee enemas, which supposedly help flush the waste products of tumor cell breakdown out of the body; dietary manipulations; ingestion of pancreatic enzymes; and megadoses of supplements and vitamins, like carrot juice. The original Gerson diet required more than a gallon a day of juices made from fruits, vegetables, and raw calf's liver, but there are many variants.

Looking back on the incident, I now wonder if the Orange Man was treated by Gonzalez himself, given that New York is where Gonzalez has operated.

The Orange Man was finally forced to return to my attending when it became clear that the coffee enemas and megadose carrot juice therapy were not working. His rectal tumor continued to bleed intermittently but with increasing frequency. It continued to grow slowly and started to interfere with his ability to defecate. Finally, it began to produce a horrible sensation of tenesmus (the intractable sensation of having to move one's bowels that rectal cancer patients sometimes get and which can at times be almost unbearable). Finally, the Orange Man had had enough.

Unfortunately, the cancer hadn't yet had enough the Orange Man. By the time he returned to "conventional" doctors and surgeons, his tumor had grown considerably. It was now intermittently bulging out of his anus and may have been growing into his anal sphincter. Fortunately, CT scans showed that it did not appear to have metastasized to the liver or elsewhere yet. Fortunately for him, the tumor still appeared to be operable. But he would require an APR and a permanent colostomy for the tumor to be excised with curative intent. There was no chance of sparing the anal sphincter and no chance that he would avoid a permanent colostomy. There was also a very high chance that the Orange Man would be left permanently impotent, as well.

The Orange Man was the first to teach me that alternative medicine that is ineffective is not harmless.

I still remember his operation. It was one of the last ones I did before I had to move on to another service. The Orange Man had a bulky rectal tumor that was very difficult to remove. He had numerous hard, suspicious lymph nodes in the mesentery, going all the way up to the root of the aorta. He clearly had node-positive disease, a negative prognostic factor. The tumor had clearly invaded all the way through the wall of the rectum, another negative prognostic factor. All I can remember thinking is: How on earth could this guy have chosen not to undergo surgery a year before, back when his tumor would have been much more easily removed, and he would have had a good chance of not needing an APR (with its attendant permanent colostomy), not to mention a much better shot at long-term survival? Why? What did the "alternative" medicine practitioner tell the Orange Man to convince him to forsake proven effective therapy? Did the practitioner promise him he could be "cured" without surgery, radiation, or chemotherapy, without pain? Did the practitioner scare him with horror stories of the complications from such therapies? Did he or she do a little of both?

I don't know what ever happened to the Orange Man. I felt very sorry for him. He had clearly been taken in by a quack and was very likely to pay the ultimate price. And he knew it. A few days later, before the Orange Man was discharged, I had to move on to another service in another hospital. I never saw Orange Man again. Given the extent of his disease, there's certainly less than a 50-50 chance that he is still alive today. If he is still alive, however, there is a 100% chance that he has a permanent colostomy that he probably didn't have to have.

Alternative medicine that is ineffective is not harmless.

When I hear advocates of alternative therapies claim that their therapies are harmless, I think of the Orange Man. When I hear advocates of alternative therapies claim that their therapies are harmless, I also think of women like Patti Davis, who underwent a breast biopsy and was told that she had breast cancer. Her cancer would have had a high probability of being cured (oncologists hate to use that word, but in this case it is not entirely inappropriate) with conventional therapy, but instead she, like the Orange Man, opted for a variant of the Gerson therapy, driving to a clinic in Tijuana, undergoing "detoxification, and eating 7-8 pounds of carrots a week at one point. Her mother, who had had breast cancer at age 47 and survived 22 years after surgery, radiation, and chemotherapy, urged her daughter to finish her surgical therapy and a course of conventional therapy, to no avail. Mrs. Davis ultimately did return to conventional therapy when she felt a lump under her arm that had developed while she was undergoing the Gerson therapy and finally realized her mistake.

By then it was too late. She later died at the age of 39.

And she has company: Debbie Benson, who eschewed conventional therapies for a treatable cancer; Lucille Craven, who went so far as to hide her diagnosis from her husband for many months while she sought treatment from various "alternative" practitioners; and many others.

Alternative medicine that is ineffective is not harmless.

I think of the Orange Man and Patti Davis, when I read or hear alties crowing about how the Gonzalez regimen is being tested by an NIH-funded trial. Although I support the rigorous testing of alternative medicine therapies in clinical trials to determine whether they have any efficacy, as I have said before (see here and here), dubious trials like the Gonzalez trial highlight the problems of the National Center for Complementary and Alternative Medicine (NCCAM), too many of whose studies are based on pseudoscience and supported by preliminary data that is shaky, at best. A prime example, the Gerson/Gonzalez therapy trial was funded on the basis of a single uncontrolled and poorly designed clinical study of 12 highly selected patients with pancreatic cancer. R01 grant applications for conventional medical therapies usually require considerable preliminary data from basic science, preclinical animal experiments, and often preliminary clinical trials if they are to have a shot at being recommended for funding. Where was the in vitro data to support the Gonzalez protocol, showing activity against pancreatic cancer cell lines? Where were the preclinical animal studies showing activity in models for pancreatic cancer (or any cancer)? Where were the animal studies that support the supposed mechanism by which the therapy is postulated to work? Not in the scientific literature or in the grant application, as far as I can tell. If I were to submit a grant application to the NCI for funding for a clinical trial based on so little data, the study section would deposit my application in the circular file; that is, if they didn't pass out from laughing so hard first! Yet NCCAM funded this one for over $1.4 million. That's $1.4 million that could have gone to fund a trial that might actually have taught us something, just like the more than $1 million that has gone to funding a trial to test chelation therapy, despite randomized clinical trials showing that it does no better than placebo for atherosclerotic cardiovascular disease. Worse, both of these studies lend credibility to these dubious therapies, because they have the imprimatur of the NIH. Because I still believe that some alternative therapies that show promise need to be tested by rigorous science (green tea as a chemopreventative agent for cancer, for example), I wouldn't go so far as Dr. Sampson, who believes that NCCAM should be completely defunded. On the other hand, it is unclear to me why NCCAM's budget continues to rise, while the NIH budget proposed by the administration for fiscal year 2006 is the tightest in more than a decade. With paylines for NIH grants falling like a rock last year and poised to fall just as much farther next year, I have to ask: Are these sorts of dubious studies the best use the NIH can find for the increasingly limited pool of taxpayer money for biomedical research?

Alternative medicine that is ineffective is not always harmless. It's not just the patients who choose them in preference to proven treatments who suffer. It's their families friends, who watch them die from potentially curable diseases (often draining their life's savings along the way), and all of us, who fund these ineffective treatments or end up paying more through taxes and insurance when a patient who might have been treated more effectively and inexpensively requires much more difficult and expensive treatment because of a delay caused by the pursuit of ineffective therapies and false hopes.

19 example(s) of insolence returned:


At 4/13/2005 9:54 AM, Blogger Saint Nate said...

While I also suppor the concept of trying new ideas, I have to say a lot of the NCCAM's studies are restating the blantantly obvious. The only way we're going to seea good result from coffee enemas or chelation therapy is if the study is poorly designed and the data poorly evaluated. Whatever the results, though, I doubt it will slow down the quacks - after all, there are still some out there selling laetrile.

While I'm usually an anti-regulation, small government man, I feel there should be more regulation against alt-med practitioners (such as being forced to refer obviously ill patients to a real physician or suffer legal consequences). Since we don't have that, the best we skeptics can do is raise awareness of how there is no one watching out for the general public in this area and blantantly obvious lies being peddled.

What I also find strange is why aren't these quacks, particularly the blantant ones like Gonzales who don't run "fly-by-night" operations, being constantly sued for malpractice. It seems there could be a legal double-standard where a competent doctor who makes a mistake is liable to lose millions, while a fraud who offers false hope and takes copious amounts of cash gets by with little more than the occasional FTC fine or disciplinary review if they are members of a medical board. I say if the alt-med people are willing to offer the services of doctors, let them face the same legal risks.

 

At 4/13/2005 12:49 PM, Anonymous Anonymous said...

Beautifully written. You should submit it for publication in the ACS journal the Journal of the AAGL, or any other widely read speciality publication.

Alan Johns, M.D. (gynecologic surgeon)

 

At 4/13/2005 3:37 PM, Anonymous Equinox said...

What a heartbreaking story. I always thought that altmed treatments were pretty harmless, too, and that there might be something to some of them. It's been stories like this one, and a good friend gently pushing me to question some of my ill-thought-out beliefs, that have changed my mind.

I'm so afraid someone I love is going to end up like him someday (my mom and half my friends are into woowoo stuff), and I don't know how I'm going to handle it.

You write wonderfully, by the way. Your blog has become one of my new favorites. Even if you are fond of the flat tax!:)

 

At 4/13/2005 7:12 PM, Anonymous Skeptico said...

A really great post. You should submit it to Discover Magazine - their "Vital Signs" column.

 

At 4/13/2005 9:31 PM, Anonymous Anonymous said...

There was a case several years ago, where the man had ingested enormous amounts of B-carotene, he too turned orange and I believe he died too.

 

At 4/14/2005 6:25 AM, Anonymous I Am A Blog Virus said...

I am a Blog virus.
Copy me into your blog & link back to the blog you contracted the virus, leaving a comment to link to yourself.

 

At 4/19/2005 1:11 PM, Blogger Aggravated DocSurg said...

Thank you for an excellent post, which needs to be required reading in high schools across the country. The sheer arrogance of the "practitioners" involved defies description, but there are unfortunately too many patients willing to buy their snake oil.

 

At 4/20/2005 4:39 PM, Anonymous Louise said...

Great post. I have a lot of friends that are into "alternative" medicine. They mostly tend to ignore the benefits of conventional medicine, to the point where I had a roommate telling me I shouldn't take chemo for my ovarian cancer because it is, ahem, "so bad for your body."

Having been through extensive medical treatment, I have even less patience for those who eschew conventional treatment in favour of "natural" medicine than I did before my diagnosis. There is plenty of evidence to support the efficacy of conventional medicine -- one needs only look at life expectency, general health, and disease management to see this. Unfortunately those who promote alternative treatments tend to overlook this information.

Thanks for this post. I just might send the link to a few people I know.

 

At 4/21/2005 11:35 PM, Anonymous Judy said...

I'm nearly 5 years post colon cancer diagnosis and 4 years post chemo/radiation.

I hang out in the colorectal cancer support group at WebMD and periodically the subject of "alternative medicine" comes up.

I always tell folks that if it's harmless, not too expensive, and their oncologist swears it won't interfere with their chemo protocol, it might be OK.

I agree with the folks who suggest that you try to get this published somewhere that Joe average might read it. You could save a life or two.

 

At 6/25/2005 4:30 AM, Anonymous Jocelyne Mc Iver, Ph.D. said...

HOw about the metallic blue ghosts, sorry patients? Those who have had megadosis of chemotherapy? What about their distraught and broke famillies?

The Gerson therapy works and works beautifully for those who do it properly. I had breast cancer and was booked for a double mastectomy, removal of axilary glands and chemotherapy (I have an official letter from the sergeon). I refused all, seing a friend of mine had recovered from stage 4 melanoma on theGerson therapy and decided to do the same. Today, I am still well,alive and whole.

Jocelyne Mc Iver Ph.D.

 

At 6/26/2005 8:32 AM, Anonymous Anonymous said...

My wife was recently diagnosed with Ovarian Cancer and I, like many people have been reading through an unending supply of alternative approaches. We are making our way through standard protocals and have begun chemo while still researching other options, should we not get favorable results. I apprecaite your insights and agree that alternative lacks the data and science to gamble a life. I'm tired of anecdotal stories, yet can't help wondering if somtheing else could provide better results. It's that wondering that keeps me hoping that somewhere someone will find a better way. It's that wondering that tugs at my soul.

 

At 6/26/2005 11:47 AM, Blogger Orac said...

I'm sorry to hear about your wife's diagnosis. It's OK to investigate "alternative" therapies. However, look for the data, rather than the testimonials. The testimonials are alway glowing.

Also, I've also learned not to be too confrontational. with people giving or citying these testimonials.

 

At 7/06/2005 6:28 PM, Anonymous Padre said...

Waitasec...let me get this straight: You're basing your opinion of alternative medicine on anecdotal evidence?

"Everyone in this country is riddled by bias and personal belief. The scientist is just someone who is in denial about it."

 

At 7/06/2005 7:28 PM, Blogger Orac said...

No, I'm basing it on science (or mainly the utter lack thereof that the vast majority of alternative medical treatments have to support them). The anecdote is merely icing on the cake, an example that showed me the price one can pay for using ineffective "cures" instead of the tried and true.

Yes, everyone has biases. That's why we need the scientific method to evaluate potential therapies. It provides a systematic way to minimize the effect of people's biases! Indeed, science assumes that people are biased, which is why control groups, statistical analysis, careful experimental design to eliminate potential source of bias (such as double-blinding studies) are so important.

 

At 8/09/2005 8:12 AM, Blogger wm said...

Interesting article.

In it you ask yourself if the "orange man" had been treated by Gonzalez, the implication being that he was following that therapy or some variation of it of his own or someone else's concotion.

Would his medical notes not have told you if he had been treated by another doctor?

 

At 8/11/2005 3:14 PM, Anonymous sophia8 said...

Jocelyne Mc Iver, Ph.D. said......
A wonderful story...that is wonderfully short on checkable facts. So when and where were you diagnosed, who was your surgeon and who can now vouch for your continued good health? And what is your doctorate in?
Email Orac privately if you don't want to give out this info in public.

 

At 8/18/2005 4:14 PM, Blogger wm said...

I don't get the point of the above post. Even if the cancer was well diagnosed, and she recovered and is in great health it's still anecdote, so won't convince anyone like Dr Orac.

And why is what her PhD was in have to do with anything?

( I think it was French by the way ).

 

At 8/19/2005 9:45 AM, Blogger Orac said...

My experience with anecdotes tells me that it probably was none of the above. Either that, or, much more likely, she did have breast cancer, but it was a cancer that was completely cured by the excisional biopsy and didn't require adjuvant therapy, as I have discussed extensively here. Even among fairly large breast cancers, complete excision alone can cures up to 50%.

 

At 8/19/2005 6:20 PM, Blogger wm said...

A few years ago I suffered from dry skin on my scalp. My doctor gave me some drops which cleared it up. When the drops ran out, the dry skin came back.

When I went to the doctor, he said that he would give me more drops, but I would have to keep using them as it was not a cure ( which I had imagined ), but would just keep the symptoms down.

I've since taken to rubbing coconut oil into my scalp which seems to work just as well as the drops and is much cheeper.

I think the point here is that people have to much reliance on prescription drugs, and the doctors don't often tell patients the limitations of what they prescribe, as they imagine there are "cures" for a lot of illnesses which simply don't have a cure from a pill or potion. You either live with them or sometimes they clear themselves up.

I think my scalp problem is stress related, as it will often get better when I'm relaxing on holday.

 

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