'Cure' a 4-Letter Word for Cancer Doctors

Monday, September 20th 2004, 10:01 am

By: News On 6

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 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.

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,'' 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.

However, there is nothing magical about that benchmark. Survival is a continuum, and five years is no more meaningful a dividing point than two, three, six or nine years.

``I honestly don't know where that came from. It goes back a long time,'' said Rowland at the federal cancer agency. She and others think it grew from a need to have some way of measuring survival and tracking cancer trends in the overall population.

More relevant statistics take into account the type of cancer someone has. With some, like bladder cancer and many of the blood and bone marrow malignancies, if someone is alive after a year or two, their long-term outlook is pretty good. But much to the chagrin of breast cancer advocacy groups and people with the deadly skin cancer melanoma, five-year survival doesn't bring great assurance that those diseases won't come back years later.

Dr. David Johnson, deputy director of Vanderbilt-Ingram Cancer Center and president of the American Society of Clinical Oncology, thinks the five-year benchmark became balm for doctors and patients who found the unpredictability of their situations intolerable.

``Physicians were reluctant to say 'you might recur,' so they'd use these terms like 'OK, in five years, you'll be cured,''' he said.

Johnson and his colleague, Carbone, both have survived lymphoma and are past the five-year mark. But statistics only tell what happens to the masses, not to individual patients.

``They can't be half-cured, like they can't be half-pregnant. So a lot of time discussing percentages often isn't productive,'' Johnson said.

``You're either cured or you're not,'' Carbone agreed.

Complicating matters is the risk of second cancers. Some of the very treatments used to cure cancer, like chemotherapy and radiation, actually can trigger new cancers down the road. People with an inherited genetic flaw that predisposed them to cancer still have that underlying problem after being treated successfully.

``The fact that you've had cancer once means that you can get it again,'' Johnson said.

But some of the trickiest situations today involve people like Jensen. 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 more precisely target cancer, 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 & 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.''

Jensen is one of the few CML patients who show absolutely no sign of cancer. He has taken Gleevec since 1999, when he enrolled in an experiment that still provides him the drug for free. It doesn't make him sick because it attacks the root causes of his cancer without killing healthy cells.

He feels like he could take it forever, and wants to. But he and his doctors are considering taking him off.

``I honestly don't know what the right thing to do is,'' but stopping the drug is the only way to find out if he and others like him are cured, Druker said.

``That's a little scary, I have to admit. Everything's going along so well,'' Jensen said. But he talked it over with his wife and decided that if Druker and his other doctors ask him to, he'd probably go off the drug.

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

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