- The Washington Times - Thursday, September 23, 2004

There wasn’t any doubt six years ago that Doug Jensen had cancer. The Oregon engineer’s blood was clogged with the immature cells that are sure signs of leukemia.Treatment with a new wonder drug, Gleevec, made them disappear. Since then, doctors repeatedly have searched his blood, even individual molecules, for bits of DNA and other substances that would reveal that he still had the disease. None has been found.

Is he cured?

“They don’t use that word,” said Mr. Jensen, who would love to hear it.

Ironically, at a time when more people are cured of cancer than ever before, fewer doctors seem willing to say so.

They call the cancer undetectable, or in remission. They tell patients that they can quit seeing cancer specialists. They quote statistics and say chances are slim that the disease will return.

They say these things because the simple truth is that they can’t tell when or whether someone has been cured. Even the most widely used benchmark — being alive five years after diagnosis — has no real basis in science, experts concede.

There’s a label for people such as Mr. Jensen who are in cancer limbo — “survivor.”

Nearly 10 million Americans have battled cancer, including 1.4 million who had it more than 20 years ago and are called “long-term survivors” by those afraid to call them cured.

Their ranks include Lance Armstrong, who leads a survivorship foundation and boasts of beating testicular cancer that had spread to his lungs and brain. Can he ever be declared cured, or must he always carry “survivor” with his Tour de France titles?

“The medical community has backed off the term ‘cured,’” said Julia Rowland, a psychologist who directs the federal Office of Cancer Survivorship, which was started in 1996, the year Mr. Armstrong began treatment.

The reasons involve more than just semantics, she and others say. “Cure” is a term with emotional and medical meanings about which there is little agreement.

To many people, it means that the cancer is gone and is not going to return.

But some cancers — certain lymphomas and leukemias, in particular — never go away completely, yet are controlled so that they’re no longer life-threatening. Some call that a remission, but others consider it a cure.

Other cancers look like they’ve gone away — no signs of them can be found by exquisitely sensitive and sophisticated tests — but recur many years later, suggesting that they weren’t really cured after all. Breast cancer is notorious for this.

“What today does ‘cure’ really mean?” asked Dr. Len Lichtenfeld, deputy chief medical officer at the American Cancer Society. “Does that mean there’s no cancer cells in your body from this cancer anymore, or does that mean that, at this particular time, there’s only two, three, four, five percent chances it’s going to come back?”

He’s not the only one trying to define the concept.

“It’s something we’ve had discussions about internally,” said Diane Balma, public policy director for the Susan G. Komen Breast Cancer Foundation, which calls its fund-raiser Race for the Cure, not Race for the Remission.

She is distrustful of absolutes. Diagnosed with breast cancer at age 30 but with no sign of it nearly a decade later, “I will never consider myself cured,” she said. “‘Cure’ means there’s no possibility of recurrence, and that’s why I don’t like the word. We all know there’s a possibility of recurrence.”

Ellen Stovall, who had Hodgkin’s disease and leads an advocacy group, the National Coalition for Cancer Survivorship, tries to ignore the issue.

“Cure is a term that I don’t need to have in order to feel well and healthy,” she said. “It’s a word without meaning in some respects. It may be useful for testifying before Congress or getting a job,” but it doesn’t predict future health.

When doctors do declare someone cured, how can they tell?

In the past, it was when they could cut out a tumor and surrounding tissue until no more abnormal cells could be seen. Many doctors today are willing to call testicular, prostate and certain other kinds of cancer cured if the tumors are small and confined to a gland or organ that can be removed.

But Dr. David Carbone, a lung-cancer expert at the Vanderbilt-Ingram Cancer Center in Nashville, Tenn., would be reluctant to say that about the type of cancer he treats.

“All the time, I see patients who had surgery done and the surgeon says they got it all, they’re cured. Statistically, they may have a good chance of being cured. But it’s all a probability. Has that surgeon done them a favor by saying that?”

The opposite situation also is true: Doctors sometimes declare a cancer cured even after it has spread beyond the place it originated. This used to be considered an inevitably terminal condition, but it’s often conquered now with chemotherapy, radiation and other treatments.

Still, it’s much harder to predict someone’s ultimate survival after cancer has spread. Doctors look at factors such as how aggressive a tumor is, and to where and how quickly it travels, but not all patients get such tests. In most cases, only time will tell.

“Some of these people have long-term survival, and some of them are going to be cured of their disease. We don’t know what to tell them,” Dr. Lichtenfeld said.

Which is why many doctors turn to statistics, and five-year survival is their favorite. By that measure, cancer surely is being cured: Nearly two out of three patients make it to that point today; only half did 25 years ago.

Some of the trickiest situations today involve people such as Mr. Jensen, the Oregon engineer. Average survival for his form of cancer, chronic myelogenous leukemia, was only five years until 2001, when Gleevec, one of a new generation of drugs that targets cancer more precisely, came on the market.

More than 95 percent of CML patients do stunningly well on Gleevec, “but this may be more akin to controlling diabetes with insulin than curing diabetes,” said Dr. Brian Druker, the Oregon Health and Science University cancer specialist who pioneered the drug’s development.

“When we look at our patients with extremely sensitive techniques, we can still see leukemia cells,” he said. “Our concern is that if we stop Gleevec, then their leukemia will come back. Are they cured? Probably not. Are they well controlled? Absolutely, yes.”

Mr. Jensen is one of the few CML patients who shows absolutely no sign of cancer. He has taken Gleevec since 1999.

“They say it’s undetectable,” he said of his cancer. “I’d like to have them say I’m cured.”

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