Docs Avoid Saying 'Cancer's Cured'

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 he still had the disease. None has been found.

Is he cured?

"They don't use that word," said Jensen, who would dearly 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 they can quit seeing cancer specialists. They quote statistics and say chances are slim that the disease will come back.

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

There's a label for people like Jensen who are in cancer limbo — "survivor."

Some wear it with pride, having fought the enemy and lived to tell about it. Others think it drafts them into a club to which they don't want to belong — Veterans of Forever Wars.

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 heads 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 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 come back.

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 of the American Cancer Society. "Does that mean there's no cancer cells in your body from this cancer any more, or does that mean that at this particular time, there's only 2, 3, 4 5 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 now heads 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 fell 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 had 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 like how aggressive a tumor is and where and how quickly it traveled, but not all patients get such tests. Most of the time, 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," Lichtenstein said.

"They say it's undetectable," Jensen said of his cancer. "I'd like to have them say I'm cured."

By Marilynn Marchione