A Struggle to Prolong Hope as Well as Life

Why is it that Americans speak of trying to whip cancer, show courage in the face of it, and die after a long battle against it? Why at the same time do we tell ourselves cancer is the new diabetes, a chronic disease we can have for a lifetime?

It's because what F. Scott Fitzgerald said about the rich -- "They are different from you and me" -- is true of cancer among the multitude of bodily afflictions. We think it's different, too.

We take cancer personally. We talk about it in terms we would never use for heart disease, which actually kills more people, or stroke, the third most common cause of American death. We impute to it something like evil intent, and to some extent we make our response to it a measure of human character.

Cancer is the physiological equivalent of war -- hand-to-hand combat, specifically. Cancer talk often invokes a soldier's virtues, not only physical strength but a "fighting spirit."

But as in combat, there's a fair amount of wishful thinking and intentional disregard of calculable risk. There aren't many statisticians in foxholes. There is a curious lack of them in cancer clinics, too. Truth may not be the first casualty in the war on cancer, but it sustains a fair amount of collateral damage.

All of this was on display in the past two weeks as Elizabeth Edwards, wife of presidential candidate John Edwards, and Tony Snow, the White House press secretary, announced their cancers -- hers breast, his colon -- had reappeared.

At the daily briefing where she described Snow's news to reporters, White House spokeswoman Dana Perino said that "if you know Tony, then you know that he's a fighter. . . . He told me that he beat this thing before and he intends to beat it again." In a separate statement, President Bush said his press secretary "is not going to let this whip him."

At the news conference Elizabeth Edwards and her husband held, the emphasis was more on optimism, less on pugilism.

John Edwards spoke of the need to "keep your head up, keep moving, be strong." He likened her metastatic cancer to diabetes, a chronic disease in which "you take your medicine." Elizabeth Edwards said she does "not expect my life to be significantly different" for the foreseeable future.

It's understandable where these approaches to bad cancer news come from.

In many ways, the fighting metaphors make sense. Treating cancer is more like a military campaign than treating congestive heart failure. Cancer begins at a distinct place in the body's geography, but can spread to and overrun distant territory, often by surprise. Therapy involves destroying or recapturing occupied territory, or visibly weakening the invader.

The optimism, on the other hand, flows from the resilience and hopefulness of both patients and the doctors treating them. These are natural reactions to adversity. But like the disease itself, cancer optimism is different from ordinary optimism.

Elizabeth Edwards and Tony Snow today have life expectancies substantially less than five years -- if their illnesses follow a course similar to that of most patients in their circumstance.

"Most," though, isn't what oncologists like to focus on -- at least when most patients in these situations don't live very long. Instead, they emphasize the best possible outcome, even when it's an unlikely one.
In statistical terms, they direct attention to the thin, right-hand "tail" of the bell-shaped curve plotting survival. That's the part of the curve representing the few people who live a decade or more. Relatively speaking, doctors don't spend a lot of time talking about the bulging middle of the curve, which represents the usual outcome.

This isn't true for a lot of discussions in medicine. When a physician prescribes a new drug or seeks a patient's consent for surgery, most of the conversation is about what happens to most people -- not the rare complications. It's the fat part, not the tails, of the bell curve doctors want to talk about -- and patients want to hear about.

In fact, it's very hard for people to get estimates of survival when a fully treated cancer returns, as it has with Edwards and Snow. The data aren't on the National Cancer Institute's Web site, and they aren't on the American Cancer Society's. Even the experts in the field aren't wild about breaking the news.

Longevity after a recurrence of colon cancer -- Snow's situation -- is a moving target, says Robert J. Mayer, professor of medicine at Harvard Medical School. It improves almost every year as new drugs arrive and new combinations are tried.

"I would tell somebody like him that we don't know for certain anymore exactly what the duration of survival will be, but that it is better than it was before and that we ought to move ahead," he says.

Asked about Edwards's likely prospects, Barry R. Meisenberg, a professor of medicine who is affiliated with the Greenebaum Cancer Center at the University of Maryland Medical Center, remarks, "We try not to focus too much on the statistics." He explains that "within 'average survival' are people who do much, much better than average and people who do much, much worse than average. Since there is no such thing as an 'average person,' statistics are not very helpful."

How (or whether) doctors tell patients they have incurable diseases and are likely to die in a few months or years -- and how well patients understand the information and use it to make decisions -- are subjects researchers have only started to look at in the last decade or so. One of them is Thomas J. Smith, a professor of medicine and oncologist at Virginia Commonwealth University. He estimates that half of cancer patients never get a full and frank discussion of their chances, and that about 15 percent don't want one.

"It is really hard to give good prognostic information. It is really hard to get it," he says.

One of the reasons is that doctors fear an unvarnished account of the survival odds may rob the patient of hope. However, studies reveal that most patients want to know their chances (even if they go on to revise them upward in their minds). Interestingly, some research has shown that a poor prognosis has little effect on a patient's capacity for hope. Hope, as lottery players know, doesn't depend on statistics.

Given all this, it's not surprising a lot of unreasonable expectations are floating around.

Research shows that doctors consistently overestimate the length of time their terminal cancer patients will survive -- but not as much as the patients do. A 1998 study of 900 people with advanced cancer found that 82 percent had more optimistic estimates of their survival chances than their doctors.

Patients and physicians also tend to play down risky treatments. A 2001 study asked 71 patients awaiting stem-cell transplants about their chances of dying from the treatment. On average they guessed 21 percent. Their doctors said 33 percent. Actual mortality was 42 percent.

And then there's the press agentry.

In recent years, news of biotech-born "targeted" drugs -- antibodies, growth inhibitors, and other biological molecules -- has given the public the impression we're in a new era of cancer therapy. It's true, we are. Unfortunately, it's still largely governed by the old era's outcomes.

One of the best of these substances, Herceptin, is useful in about one-quarter of breast cancers. A study published in January showed that when added to standard chemotherapy, it cuts by one-third a woman's risk of dying in the two years after her tumor is diagnosed. It may ultimately boost long-term survival; that isn't known.

Others are less impressive.

Avastin, which blocks blood vessel growth and was once touted as potentially a general "cure for cancer," slows the progression of advanced colon cancer for four months, and extends life by five months. "These improvements are clinically meaningful," researchers wrote pleadingly in the New England Journal of Medicine in 2004.

Four months may be a gift (especially to those with young children, like Edwards and Snow). But such advances are hardly turning cancer into a chronic disease like diabetes, the ailment John Edwards compared to his wife's cancer. Most people with diabetes live for decades.

But if that analogy was inapt, Edwards's declaration that his wife's cancer won't be cured showed he understands the central fact about her disease now.

"A surprisingly high proportion of patients with metastatic solid tumors don't realize that there is no chance for cure," says Jane C. Weeks, an oncologist at Dana-Farber Cancer Center in Boston. "I've wondered how many patients in exactly that situation have been shocked to learn otherwise from the coverage about Elizabeth Edwards."

There's a crash course on cancer underway. For better or worse, we're going to see how it touches a number of public lives.

"So they are not in this alone," Weeks says. "They are in it with all of us."

source:www.washingtonpost.com