Yesterday, I marveled at an article that appeared on the Associated Press new feed that basically said a lot of things about the infiltration of quackademic medicine into academic medical centers, how so-called “complementary and alternative medicine” 9CAM) is finding its way into the mainstream despite almost nonexistent evidence for the efficacy the vast majority of them, and how supplements are virtually unregulated. If the article had mentioned the extreme scientific and biological implausibility of nearly all of the non-herbal CAM therapies that are routinely promoted, it would have sounded like Orac, only with some of the “tell both sides” nonsense reporters consider mandatory.
I thought that was good enough, but it was just a warmup for act two. The followup is even better. In fact, the followup takes on cancer quackery and it does an excellent job in not just one article, but three articles:
- 60 pct of cancer patients try nontraditional med
- “You’ll try anything,” says cancer patient
- Cancer patient learns herbals can interfere
The beginning of the first of these articles reads like a story I told a long time ago about a cancer patient I dubbed The Orange Man. As my anecdote told the story of a man who had rejected surgery for his rectal cancer in favor of megadoses of carrots and coffee enemas. It tells the story of a cancer patient named Leslee Flasch:
TAMPA, Fla. - With much of her lower body consumed by cancer, Leslee Flasch finally faced the truth: The herbal supplements and special diet were not working.
“I want this thing cut out from me. I want it out,” she told her family.
But it was too late. Her rectal cancer — potentially curable earlier on — had invaded bones, tissue, muscle, skin. The 53-year-old Florida woman could barely sit, and constantly bled and soiled herself.
“It was terrible,” one doctor said. “The pain must have been excruciating.”
Flasch had sought a natural cure. Instead, a deadly disease ran its natural course. And the herb peddlers who sold her hope in a bottle?
“Whatever money she had left in life, they got most of it,” said a sister, Sharon Flasch. “They prey on the sick public with the belief that this stuff can help them, whether they can or can’t.”
This is what the Orange Man was on his way towards. He, however, realized that the quackery he was pursuing was not working before it was too late. That’s not to say that he didn’t pay a steep price. His tumor grew and bled in the many months he pursued coffee enemas and various other woo to the point where it was no longer potentially resectable by an anal sphincter-sparing procedure. He had to undergo a procedure called an abdominoperineal resection (APR), which necessitates removal of the anus and sewing the hole shut, leaving him with a permanent colostomy. Not only that, but he decreased his chance of a cure. Indeed, given that that was 13 years ago, I sometimes wonder if The Orange Man is still alive. It’s probably less than a 50-50 chance.
Mrs. Flasch followed the Orange Man’s path, but she did him one better. She waited too long. The tumor had started to invade surrounding structures: muscle, bone, skin. Let me tell you: I have seen patients like Mrs. Flasch. They didn’t get that way because they pursued woo instead of medicine; they got that way because of neglecting their tumor. Suffice it to say, it’s not pretty. It’s not pleasant. It’s horrifying. These patients suffer unrelenting discomfort and pain. In particular, they often suffer from a nagging, unbearable sensation known as tenesmus, the feeling that they have to pass a stool. Although they strain and try, they pass little or no stool. Have you ever had to defecate but couldn’t? Remember how nasty that felt, how much it drove you crazy until you finally could go? Now imagine feeling that way all the time, 24/7 and you’ll get some idea of how much tenesmus tortures rectal cancer patients and patients with inflammatory bowel disease, who also often suffer from it. Then, as the tumor grows and invades, it can find its way into a plexus of nerves (the sacral plexus) and cause unrelenting pain that is not easily controlled with narcotics. Patients become incontinent, constantly soiling themselves, and the only way to relieve this is to do a diverting colostomy or ileostomy, so that the fecal stream never reaches the rectum.
This same article also describes another patient who succumbed to quackery:
Mary Nedlouf paid that price. She traveled from Orlando, Fla., to a Connecticut doctor who offered to treat a breast cancer that others called incurable. Her husband, Said Nedlouf, said the doctor asked about traumatic events in her childhood to “get to the roots” of her disease. The doctor also passed a wand over her and said he detected a problem with her liver. His treatments were as strange as his diagnostic methods.
“Mary would scream sometimes because those electrical things, those zappers that he put on her, would hurt,” Nedlouf said. “What do you do? We’re thinking she’s getting something, some treatment that’s a cure. She wanted to believe, and I wanted to believe for her.”
After three months of lost wages and $40,000 to the doctor, Nedlouf said he spent another $13,000 for an air ambulance to take his wife home. She died three weeks later at age 42.
“She suffered. And we lost all this money,” said Nedlouf, who filed a complaint in 2007 against the doctor with the Connecticut Department of Public Health that is still pending.
This sounds a lot like an unholy combination of the German New Medicine (or Biologie Totale) fused with Hulda Clark’s “zapper.” German New Medicine, if you’ll recall, is based on the concept that cancer is not really a disease, but rather a reaction to various life trauma and that, to cure cancer, one has to find the source of the life trauma and fix it, while Hulda Clark claims that all cancer is caused by a liver fluke and that she can cure it by “zapping” it with an electrical device that looks cobbled together from spare parts bought at Radio Shack on clearance.
Finally, a companion article describes another cancer patient taken advantage of by quacks, Meg Gaines:
MADISON, Wis. – As a criminal defense lawyer, Meg Gaines valued evidence. But as a 38-year-old mom with ovarian cancer that had spread to her liver, evidence took a back seat to emotion as she desperately sought a cure.
With a cancer that grim and two young children to raise, “you’ll try anything,” she explained.
Which is perfectly understandable. However, it is that desperation that cancer quacks take advantage of, whether they mean well but are simply deluded that they can help or whether they are true scammers. Gaines, fortunately, eventually turned her back on quackery and turned out to have treatable disease.
The original article makes a number of observations of interest. The first is that apparently 60% of cancer patients try some form of unconventional therapy. Given how broadly “unconventional therapies” are often defined, encompassing prayer, supplements, massage therapy, etc., this doesn’t surprise me. What did surprise me was this:
About 7 percent of cancer patients go straight to an alternative approach, sometimes traveling to Mexico, the Bahamas or a “spa” in Europe for treatments not allowed in the United States, Cassileth’s research found. Most cancers spread slowly, so people can be temporarily fooled into thinking herbs or special diets are keeping it at bay.
That number seems rather high to me, and I couldn’t find the original article providing that estimate. If that’s true, it’s a truly frightening number, a huge number of potentially curable patients throwing away their best chance at beating their cancer in favor of quackery that leaves them broke before they die. What does seem correct to me are the other harms that cancer quackery can do to cancer patients: gouge the patient for thousands of dollars; result in deadly delays in treatment; cause false hope; and even interfere with standard chemotherapy.
Indeed, one of these articles is the story of a man who found out just how “alternative” cancer therapies can interfere with standard treatment:
When Palella learned he had cancer, he added the chiropractor’s “prostate cancer protocol” to the other combos he was taking. They had names ending in “plex” and he had no idea what they contained. He swallowed more than three dozen pills each day, and was thrilled to learn that his ex-wife, also a chiropractor, could get them for half price instead of the $700 they would have cost him.
“I said, `Boy, I can take more of this now. I can afford more of the good stuff.’”
And so it went until a dietitian at Tampa’s Moffitt Cancer Center asked if he were taking any supplements. He had always said ‘no’ when doctors asked about medication use.
“I didn’t think they were medications. They’re not prescription, they’re not drugs. This is all natural substances, made from natural products,” he explained.
But he told the dietitian the truth. She was alarmed, and at his next visit, “She had a file ready for me,” Palella said. She said that some of his herbal pills could interfere with hormone treatments for his cancer, and showed him a recent medical study raising concern about that.
“It scared the hell out of me. I thought, ‘I’m not helping things here,’” Palella said
It’s true. It’s not uncommon for supplements to have hormones in them. One example that I have a bit of direct knowledge of, mainly because medical oncologists at my old cancer center studied it, is PC-SPES, which showed some activity against prostate cancer. The reason, it turned out, is because it had a lot of phytoestrogens in it. Of course, in a woman with breast cancer, taking phytoestrogens might not be such a good idea. But that’s not all:
- Vitamin E can prolong bleeding time and has forced cancellation or delay of cancer surgeries; some studies suggest it may raise the risk of certain cancers.
- Beta carotene, a precursor of vitamin A, may raise smokers’ risk of developing lung cancer.
- Folic acid supplements may raise the risk for precancerous growths in the colon.
- Vitamin C in large doses may help cancer cells resist chemo and radiation.
In January, doctors reported that a selenium supplement containing kelp — which is loaded with iodine — was interfering with the low-iodine care recommended for a man with thyroid cancer.
Herbals and dietary supplements can undermine cancer treatments in ways that patients can’t feel and doctors can’t measure. When a treatment fails, it’s impossible to say whether it was due to the person’s cancer or because a supplement subtly interfered.
There’s reason why these supplements and so much of “alternative” medicine is referred to as “alternative.” It’s because they have not been validated scientifically. They have not been shown by science or clinical trials to be efficacious against the diseases they’re being used for, nor have they necessarily been shown to be safe. As I like to say from time to time, there is no such thing as “alternative medicine.” There is medicine that works, medicine that does not, and medicine that has not been shown one way or the other. The vast majority of “alternative” medicine falls into one of the latter two categories. More importantly, the key difference between “alt med” and science-based medicine is that science-based medicine changes as new evidence comes in. “Alternative” medicine that is shown to be safe and effective by science ceases to be “alternative” and becomes simply “medicine.”
Until that happens, selling “alternative” medicine to cancer patients, regardless of the motivation behind it, is to sell cancer patients false hope and risk delaying their receiving effective therapy, and “complementing” conventional therapy adds nothing while risking harm.