Renal Cell Live!

Monday, March 03, 2008

Snake Oil by Chanel

Last week a well-meaning friend sent me a "Johns Hopkins Cancer Update". As the email requested, she sent it to everyone in her address book. It sounds good: a clear-cut enumerated list of statements about cancer that identifies what causes it, and states definitively how to combat it. The only problem is that it's not true - it's an urban legend, and never came from Johns Hopkins to start with.

My first thought was to just hit the delete button; then I thought, no, I'd better give a response because it's not good to spread this stuff further. Before I could do so, though, I got another message from her: One of her correspondents is a physician, who repudiated the content. My friend sent out a message to everyone apologizing and quoting his comments, "The information in the email is irresponsible and innacurate [sic] and may well cause harm or even death to those who choose to ignore appropriate medical advice. I do not suggest passing this email on to others."

Since my diagnosis, I've gotten lots of suggestions for cures and treatments from friends. Some constitute advice about dealing with side effects (fatigue, generally); others are claims for nutritional cures; still others advocate alternative medicines. Some of these suggestions are reasonable, sound advice, while others are way outside the fringes of reality.

There may be a grain of truth behind all of these suggestions, but I'm pretty skeptical. There are many distinct types of cancer, but most of the "cures" talk in general terms of "cancer" as if all cancer cells behave identically, and that what will work for one will work for another. Yet accepted wisdom says that renal cell almost never responds to radiation or standard chemotheraphy, so these methods of treatment are almost never tried. Likewise, every person responds differently to medications - I need look no further than myself for the truth behind that. What works for one person may not work for the next.

People want to believe that there's a solution to cancer, and that this solution can be codified and passed along to someone they care about. And it can be a great comfort to see a list, or a diet, or another scheme, headed up with a recognizable name - would you rather get advice from an unnamed source, or from, say, Mother Teresa?

I really have a problem with these indiscriminate, false attributions - as a former librarian, I know how to track things down and can evaluate sources pretty easily. But others may not know where to go to validate a statement, and sometimes taking these things on face value can be risky.

Perhaps Alan Alda puts it best, in his recent book Things I Overheard While Talking To Myself. He discusses the mythical but comforting "wear sunscreen" address supposedly delivered to MIT graduates by Kurt Vonnegut. Alda writes,

"It's a delightful piece of writing. But if it's presented as if it were by someone other than the person who wrote it, it steals that person's good name and gives a certain credibility before it has a chance to earn it honestly. So, as good as it is, it's a cheat. At least in the way it's offered to us."

I hope we can think critically about what's presented us in all arenas, but there's so much at stake in terms of one's health - it's doubly important to be careful.

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1 Comments:

  • I hear you. If I had a nickel for every FMS "cure" I've been told about, well, you understand.

    By Blogger Swanknitter, at 9:04 PM  

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