Monday, July 13, 2009

Science-based medicine conference, part 2: cancer quackery

This is part two of my summary of the Science-Based Medicine conference at TAM7, which will be followed by a summary of TAM7 itself. Part one is here.

David Gorski, surgical oncologist and associate professor of surgery at Wayne State University, perhaps better known as Orac of the Respectful Insolence blog, spoke next on "Case studies in cancer quackery: Testimonials, anecdotes, and pseudoscience." He began with a disclaimer (he doesn't speak for his employer) and some disclosures (he receives no pharma funding and isn't paid to blog).

His talk was about misrepresentations by cancer quacks, who use exaggeration and misrepresentation and make false promises. To illustrate exaggeration, he showed a cartoon that described "three approved paths to the graveyard," "cut" (surgery), "burn" (radiation), and "poison" (chemotherapy) (the exaggeration is in the title rather than the descriptions, which are he admitted were accurate). To illustrate the latter, he showed a series of book covers by Hulda Clark--"The Cure for All Advanced Cancers," then "The Cure for All Cancers," and then "The Cure for All Diseases." She thinks that all cancers and diseases are caused by liver flukes, to be diagnosed with a "Syncrometer," a device similar to a Scientology E-meter, a galvanometer that measures electrical resistance of the skin, and cured with the "Zapper," a low voltage electrical device.

Some of the frequent claims of cancer quacks are that they are "wholistic" and treat the whole patient rather than a part or a symptom, that "we treat the real cause of cancer," that their treatment is "natural," and that "cancer is not the disease, it's a manifestation of something else" such as psychological conflict. And, of course, the ever-popular generic "toxins." They also claim that natural cures are being suppressed because Big Pharma can't make a profit from them.

Testimonials
Gorski next turned to the role of testimonials in cancer quackery, which he said are being used for several reasons, the first N of which are "to sell a product." Two other reasons are "to persuade others" and "to attack standard evidence."

He gave Gorski's Laws of Testimonials:

1st Law: When a believer in Alternative-Based Medicine (ABM) uses a combination of both science-based medicine (SBM) and ABM and gets better, it's always the ABM that gets the credit.

2nd Law: When a believer in ABM uses a combination of both SBM and ABM and dies or gets worse, it's always SBM that gets the blame.

He next described two cases of testimonials, the first of which was an example of a "not cancer" testimonial. This was a testimony of a man who felt a lump on his chest which he claimed to be breast cancer, which was successfully treated by some quack remedy. But this was never diagnosed as cancer, and Gorski noted that from the description it actually sounded like a case of gynecomastia rather than cancer. His second case was that of Daniel Hauser, a 13-year-old boy with Hodgkin's lymphoma, who went through one round of chemotherapy with good results, but then stopped taking it because he and his mother wanted to use an alternative treatment from "Chief Cloudpiler." The judge ordered chemotherapy to be continued, and he and his mom took off, though ultimately returned and re-started chemotherapy. During the time chemotherapy stopped, the tumor grew to larger than it was originally, and when it was restarted, it again responded to treatment--but of course his mother gave credit to the alternative treatment.

The problems with testimonials are that there may not have been a diagnosis of cancer, there may have been a misunderstanding of the diagnosis (e.g., "I was sent home to die"), there may be important information withheld, the diagnosis may have been done by quack tests with no validity (e.g., the Syncrometer or live blood cell analysis), and there may be a selection bias. As an example of the latter, he noted that dead people don't give testimonials.

Questions for Evaluating Testimonials
He provided a modified version of Dr. Moran's questions to ask in order to evaluate testimonial evidence. These questions include:
  • Was cancer definitely present?
  • Did it go away?
  • Was the advocated treatment the only one used?
  • Was the alternative therapy a replacement for primary or for adjuvant therapy?
At this point, he distinguished primary, adjuvant, and neo-adjuvant therapies. The primary therapy for most cancer treatments is surgery, to remove as much of it as possible. Adjuvant therapy is designed to reduce the risk of recurrence, where radiation is used to reduce the risk of local recurrence (cancer in the same place, to make sure you get rid of it all) and chemotherapy is used to reduce the risk of a systemic recurrence (cancer that may have spread to other parts of the body). Neo-adjuvant therapy is designed to shrink a tumor prior to surgery, and may reduce complications and produce better results from surgery.

Suzanne Somers
To illustrate the importance of these questions and distinctions, he used the case of Suzanne Somers, who was diagnosed with breast cancer at the age of 54, probably at stage I. She had no positive lymph nodes and underwent a lumpectomy, radiation, and a lymph node biopsy, but refused chemotherapy with tamoxifen in favor of mistletoe extract and other supplements.

In her case, the answers to the questions were:
  • Was cancer present? Yes.
  • Did it go away? Yes--it was removed by surgery.
  • Was the alternative medicine the only or primary treatment? No.
He then examined her probable survival rates with and without chemotherapy, and noted that if the tumor was small, the benefit of chemotherapy for her 10-year survival rate could be as low as 1%. With a larger tumor, her 10-year survival rate improvement could still be as low as 4% (and would already be at 90% prior to chemo). But, Gorski noted, most women say that they would go with chemotherapy even for as little as a 1% increase in survival rate.

Surgery cures most cancers that can be cured, up to stage III, and the corresponding benefits of chemo and hormonal therapy increase with more advanced stages of cancer.

Gorski then observed that there may be cases where a person is diagnosed with cancer by a biopsy, declines further treatment, and has a good survival rate, where they fail to realize that the biopsy itself has been a surgical primary treatment that has excised all of the cancer--an excisional biopsy may be equivalent to a lumpectomy. He also noted that many people say to go ahead and take out the tumor but don't touch my lymph nodes, and he agreed that lymphedema, which can be caused by surgical or radiation treatment of the lymph nodes, is "not a fun thing." But the new standard of care is to use blue dye and a radiotracer procedure to find lymph nodes likely to be positive for cancer ("sentinel lymph nodes"), and treat accordingly.

Kim Tinkham
Kim Tinkham is a woman who saw The Secret, had stage III breast cancer, and declined all treatment. She now claims the cancer is gone, based on a quack blood test, even though the lump is still present, and has written a book about it. She is a follower of Mormon naturopath Robert O. Young, who claims that acid is the cause of all disease and alkalinization is the cure for everything. He says there is no such thing as a cancer cell, just a healthy cell spoiled by acid. Two years after her initial diagnosis, Tinkham is still alive.

Gorski pointed out that for a case like hers, expected survival for five years with treatment could be over 50%, but at ten years it goes way down. Data about untreated cancer comes from 250 cases of "large palpable tumors" from 1805-1933 at Middlesex Hospital in Connecticut. At 10 years, 3% were still alive, and at 15 years, 0.8% were still alive; the median survival rate was 2.87 years.

He noted that breast cancer biology is "highly variable in clinical behavior" and in some cases may be "indolent, slow-growing, and slow to metastasize."

The answers to the testimonial questions for Tinkham are:
  • Was cancer definitely present? Yes.
  • Did it go away? No.
  • Was the alternative treatment the only one? Yes.
Time will no doubt soon tell how (in)effective this alternative treatment has been, unfortunately.

Testimonials as Conversion Stories
Gorski suggested that these testimonies are really part of "cult medicine" and seem to follow a pattern like religious conversion stories. The specter of death comes like a "bolt out of the blue," the person repents and says "I brought this upon myself," they face temptation in the form of standard medical care, they search for enlightenment, and then they find enlightenment in the form of some alternate description of their ailment which they then want to evangelize.

Michaela Jakubczyk-Eckert
Dr. Gorski concluded his talk with the story of Michaela Jakubczyk-Eckert (warning, graphic images), who was born on November 14, 1964 and died on November 12, 2005, just two days short of her 41st birthday. She had a T4 lesion eating through the skin of her breast, a case of "classic delayed diagnosis." She received neo-adjuvant chemotherapy treatment which shrank the tumor considerably, but then discovered Ryke Geerd Hamer, the inventor of German New Medicine, who argued that cancer is caused by psychological conflict rather than anything biological. She stopped her chemotherapy, and suffered a horrible relapse. As Gorski put it, she "died a horrible, horrible death" with her final days being subjected to the pain of a rotting-away body of skin and bones--a death far worse than chemotherapy. It was a vivid depiction of the alternative that cancer quacks can cause for their victims. Her husband has put up a website to try to dissuade others from being fooled by Hamer's theories (see link above to her story).

Dr. Gorski has written a blog post at the Science-Based Medicine blog on alternative medicine testimonials that covers some of the above subjects in more detail.

(Part three of my conference summary, on chiropractic, is here. Part four, on evidence-based medicine and homeopathy, is here. Part five, on chronic Lyme disease, is here. Part six, on online health and social media, and the closing Q&A panel, is here.)

2 comments:

Rustico said...

Jim,
Good article(s).

One minor factual issue under the "Kim Tinkham" tesimonial, you don't actually know for certain that the cancer did not go away. I suspect you are correct, but I don't think you can say for certain from the evidence you present.

As a cancer patient, it is easy to understand how people turn to "quackery" after scientific methods fail. Or even before they fail. Cancer has an extremely strong emotional impact and I've experienced first hand having logic and rationality go right out the window.

Jim Lippard said...

Dr. Gorski has a blog post at the Science-Based Medicine blog which discusses Tinkham's case. He quotes her testimonial: "She can still feel the tumor just underneath the surface of her skin, where it will probably remain for a while.

But she knows it’s harmless. Now, it’s simply her badge of honor - the reminder that she, Kim Tinkham, defeated cancer without any surgery, invasive procedures, radiation or chemotherapy."

He goes on to note that there is no blood test that can tell a woman she is free of breast cancer.