Friday, April 24, 2009

Bagging the beast

Phyllis Kutt had good genes -- only a couple of cancers in her family. She ate right -- vegetarian, in fact. She exercised, she didn't smoke, she saw the doctor, she didn't correspond to any known risk group. She still ended up with metastatic breast cancer.

When I saw a Gina Kolata cancer article today, "Pledged to Find Cancer Cure, but Advances Prove Elusive," I expected a useful corrective; that is, a piece that would describe the complexities of curing cancer, the lack of actual progress made in preventing and treating disease, the structural problems with the research complex and more. There's that, but also a lot more, much of it buried in the story of Phyllis Kutt, which is toward the end of the piece. In a few hundred words, the world's best newspaper introduces you to what this disease is, in the person of a highly intelligent and sympathetic heroine with some bad luck.

Kutt's thoughts, economically but powerfully portrayed, range from the shock of diagnosis, the difficulty of initial treatment, the pain of recurrence. Now she's in treatment for life:

“I am still on that and will be forever until the cancer progresses and I change to other drugs or some new drugs are developed, or I die,” she said.

The hardest part is explaining to friends and family.

“People will say to me, ‘So when is your treatment going to be over?’ ” Ms. Kutt said. “That’s the perception. You get treated. You’re done. You’re cured.”

“I think some of my family members still believe that,” she added. “Even though I told them, they forget. I get cards from my nieces, ‘How are you doing? You’ll be done soon, right?’ ”

From here, the article moves back and unlocks the context for some of this false hope: the technical language used in the testing-and-review process for new drugs. I've touched on this here and there, but Kolata does so in an efficient way:

One reason for the misunderstanding, he said, is the words that cancer researchers and drug companies often use. “Sometimes by accident, sometimes deliberately, sometimes with the best intentions, sometimes not, we may paint a picture that is overly rosy,” he said.

For example, a study may state that a treatment offers a “significant survival advantage” or a “highly significant survival advantage.” Too often, Dr. Saltz says, the word “significant” is mistaken to mean “substantial,” and “improved survival” is often interpreted as “cure.”

Yet in this context, “significant” means “statistically significant,” a technical way of saying there is a difference between two groups of patients that is unlikely to have occurred by chance. But the difference could mean simply surviving for a few more weeks or days.

Then there is “progression-free survival,” which doctors, researchers and companies use to mean the amount of time from the start of treatment until the tumor starts growing again. It does not mean that a patient lives longer, only that the cancer is controlled longer, perhaps for weeks or, at best, months. A better term would be “progression-free interval,” Dr. Saltz said. “You don’t need the word ‘survival’ in there.”

I don't know if I'd dive into this piece when there's sunny gardening time to be spent, but I learned from in it and even (thanks to Ms. Kutt) found a little inspiration.

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