The Many, and Healthy, Ways to Live With Cancer

By Rob Stein and Shankar Vedantam
Washington Post Staff Writers
Thursday, March 29, 2007

When David Stellar found out his cancer was back -- this time in his lungs -- he sat down with his wife to talk about what they should do. It was a short conversation.

"Work is a low priority and family time is a high priority," Stellar said. "That was about it."

So the 46-year-old San Diego architect quit his job and has been spending the past four months trying to have as much fun as he can with his wife and 9-year-old son as he undergoes chemotherapy for the cancer, which began in his tonsils.

"We went snowboarding three times this winter, which was great," Stellar said. "We went to watch the whales and their babies last month. That was pretty cool. I'm going to ride my bike down with our dog this afternoon to pick up my son at school. It's been pretty life-changing."

The back-to-back announcements by Elizabeth Edwards and Tony Snow that they had suffered cancer recurrences has focused attention on how people respond when they get the news that they have cancer, or that their malignancy has returned.

For some, the news prompts radical life changes like Stellar's. For others, the diagnosis, while stunning, is quickly incorporated -- by choice or necessity -- into their lives, which they carry on as best they can, juggling cancer along with job, marriage and children.

Unlike a fatal injury, cancer plays out over months or years. Unlike an infectious disease, all reprieves inherently feel temporary. To fight cancer, patients and experts say, is to fight a never-ending battle against uncertainty and helplessness.

"It forever changes you," said Jackie Nedell, 53, who learned she had breast cancer four years ago. "I don't think anyone can ever say they are the same after the diagnosis."

Nedell knew she would have to take some time off from her job at a public relations agency for the worst of the chemotherapy. But she was eagerto get back to work.

"You crave normalcy," said Nedell, who lives in Bethesda. "I couldn't wait to get back to work. You want to reclaim as much of your life as quickly as you can."

The contrast between Stellar and Nedell mirrors the spectrum of reactions of cancer patients to their diagnoses, experts say.

"There's no one response to cancer. We're all unique," said Julia Rowland, director of the office of cancer survivorship at the National Cancer Institute. "How we cope with crises in our lives is as individual as we are."

One thing that all cancer patients seem to express is the feeling that no matter how long ago their initial diagnosis, the fear of recurrence is always there -- a fear reawakened for many with the news this month about Edwards, the wife of Democratic presidential candidate John Edwards, and White House press secretary Snow.

"I think you always have it in the back of your mind, and there are times when it moves to the front of your mind," said Becky Krimstein, a 44-year-old breast cancer survivor in North Potomac. "If you have some weird pain you think, 'Is it just a pain or could it be a recurrence? Is it back?' "

For Krimstein, her diagnosis triggered life changes, albeit slowly.

"I have drastically changed my life, but it's been more incremental," said Krimstein, who eventually left her job in local television to start a documentary film company with her husband, Gary. "It wasn't one of those things like, 'Let's sell the house and travel the country.' But looking at where I am now, nine years later, I realize it set in motion a lot of changes."

Among the biggest initial challenges are the practical logistics -- finding information and doctors, dealing with insurance matters or, if the patients are not insured, struggling to figure out how they are going to pay for their care.

But assuming they get optimal care, research shows that the specific changes that cancer patients do or do not make in their lives are probably less important to their odds of survival than their emotional state.

"It depends what's meaningful for the individual. If someone feels their job is stressful and non-supportive, that individual will be well served to find a way out of it," Rowland said. "But someone else will say, 'I love my job and that's meaningful and important to me.' That's very different than someone who says, 'I might as well quit since I'm not going to be here in six months.' "

A strong network of personal support appears to be crucial, helping to make the experience easier and, perhaps, boosting the chances of survival. For some, having strong religious faith helps. For others, having close friends and families is what matters.

While it remains unclear how much of a role emotions play, patients with a positive outlook appear to have stronger immunity, less stress and fewer toxic side effects from treatment, many studies have shown.

"What clearly doesn't work well is a sense of helplessness and hopelessness," Rowland said. "That feeling that 'I'm not going to make it.' These are the people we worry about the most."

Experts and patients are quick to point out, though, that a positive outlook offers no guarantee.

Nevertheless, patients who seem to fare best are those who approach the disease with the mind-set of athletes at a major competition, researchers say. The fear and feelings that accompany a cancer diagnosis are real -- and beyond control. But what patients do with those fears and feelings is far more under their control than many realize, they say.

Merely telling patients to be optimistic can be demoralizing. What seems to work is specific training to improve people's ability to cope, said Kevin Stein, who studies how patients cope with a cancer diagnosis at the American Cancer Society.

Stein teaches patients three key steps: Stop. Think. Focus. When a patient feels overwhelmed by thoughts such as "I can't do this," "I am not strong enough" or "I can't make it through this," the technique teaches them to consciously tell themselves, "Stop!" The next step is to deliberately seek out positive aspects of the situation, such as "I am a strong person" or "I have great support from family and friends." The last step is to focus on the positive thought.

"You have to be based in reality, but in that realm you can still be positive," Stein said.

One technique that seems to be crucial for both newly diagnosed patients and those who suffer a recurrence is to learn to stay in the present, rather than drifting into the "what if's" of the future and the "if only's" of the past.

Stein tells the story of a breast cancer patient who was furious because her doctor had not conducted a proper breast exam and had not caught the cancer early. Now, she faced a mastectomy. He advised her to stay focused on the positives, but she could not let the anger go. Three months later, she suffered a stroke that left her paralyzed.

"She said to me, 'Dr. Stein, you were right. I still had a wonderful life and wonderful things in my life and I should have appreciated what I had left, because now I am in this wheelchair,' " Stein said. "I said, 'You know what? You still have to find the positive things. You are still alive, you can still communicate. Be in the moment and appreciate what you do have, because it is fleeting.' "

One study, in the Journal of Consulting and Clinical Psychology, found that cancer patients who were taught how to manage stress and were given training in problem-solving, constructive thinking and how to plan pleasant activities coped far better than those who were merely part of a support group or got no psychological intervention at all.

A federally funded study last year found that cancer patients who actively sought help and developed a plan of action were more likely to find meaning in their experience than those who were passive. Doing something about a worry -- calling a nurse or a doctor, for example -- was useful not just in alleviating the worry, but in giving patients a sense of control, said Barbara Andersen, a Ohio State University psychologist who conducted the study.

Some caution that it's important to maintain some balance.

"I would spend hours in the Internet, or in the bookstore, trying to get as much information as I could," Krimstein said. "You can get kind of obsessed. You need to be armed with information, but you can drive yourself kind of crazy, too."