The following is reprinted from the Summer issue of Heal: Living Well after Cancer.

By Susan Meyers

David Lorber calls each day a gift. Diagnosed in 2004 with a slow-growing form of lung cancer, bronchoalveolar carcinoma, the chemotherapy pills that he takes each morning are a daily reminder that his time is likely to be limited.

That same year, John Elliott was diagnosed with the aggressive brain cancer glioblastoma multiforme, and given six to eight weeks to live. Now, almost four years later and after a lengthy regimen of medication, Elliott is defying the odds.

New cancer therapies are extending life for a growing number of patients. But the road for these cancer survivors can still be long and arduous, filled with social, emotional, and physical challenges that extend well beyond treatment.

Lorber, Elliott, and others are learning to grapple with this increasingly common reality, that the cancer experience doesn’t have to be an either/or situation—that either a person is “cured” or the illness is clearly terminal. Rather, the reality of cancer can be an ongoing circumstance—and one often marked for individuals by a weighty uncertainty about how long they can survive with the disease.

Many situations can fall under the umbrella of chronic cancer, including patients who have no evidence of disease but require ongoing medication; patients with measurable disease that has stopped growing or is progressing very slowly; people fighting a steady battle against metastases; or even those whose cancer, while in remission, has a high probability of returning. What can result is a state of mind that, while reflecting much of the same anxiety as that of anyone who has faced death after a cancer diagnosis, has the potential to last much longer.

“Although most of my patients certainly prefer their chronic cancer to the alternative, it doesn’t mean it’s easy,” says Steven Passik, PhD, attending psychologist at Memorial Sloan-Kettering Cancer Center in New York City, who primarily has been treating cancer patients for some 20 years. “Knowing that you have a finite number of years to live—that can be a very difficult cross to bear.”

Unique Coping Strategies

How such cancer survivors cope with the daily battle against the disease can be as unique as the people themselves. “Cancer affects people differently,” says Alice Kornblith, PhD, social psychologist at Dana-Farber Cancer Institute in Boston. Those who tend to fare better are patients with a solid social support system; those with fewer other health conditions; people who are older; those who have had fewer stressful life events; and those who’ve had less toxic treatment, Kornblith says.

A 1994 study in the European Journal of Cancer by Russell Portenoy, MD, a palliative medicine specialist at Beth Israel Medical Center, and colleagues including Kornblith found that cancer patients had on average five psychological and physical distress symptoms to deal with on a daily basis. And nowadays, with the life-extending capabilities of today’s therapies, cancer survivors are challenged to resume as normal a lifestyle as possible.

Symptom management is a critical component of being able to function normally, notes Passik. A 2000 study by Victor Chang in the journal Cancer showed a direct linear relationship between the number of symptoms (such as lack of energy, pain, dry mouth, shortness of breath, and trouble sleeping) and a patient’s quality of life, says Passik. “The science of symptom management has moved forward dramatically. While we have many drugs to manage pain, we must also ensure that patients are receiving the right drugs to manage the side effects of treatment.”

Just as difficult as controlling the physical symptoms is the psychological component of having to face cancer every day, notes Passik. “It takes a very specific type of mindset,” he says. “Having chronic cancer can be a full-time job. It takes a paradigm or shift in a person’s mindset.

“When you’re first diagnosed, you gear up with family in the crisis mode and marshal their support. Now you’re digging in for the longer haul, and you’re dealing with a wide range of issues from attitude to parenting and work issues to integrating self-care and gathering long-term support.”

Other Shared Realities

Survivors with chronic cancer share many more of the challenges faced by cancer patients whose treatment course is finite. Some suffer from ongoing depression or anxiety as a result of their cancer experience. They may also worry about the effects of cancer on their spouses, their children, their employment and finances, and on their futures. And they face uncertainty in not always knowing what they can do to keep themselves healthy.

Research provides some indications of what treatments could help. A number of studies have shown small to moderate, but significant psychological improvement, in cancer patients who receive certain medications or other therapies, notes Kornblith. Examples of these therapies include anti-anxiety and antidepressant medications, education, support groups, individual and group therapy, identification and reinforcement of positive coping skills, relaxation techniques, and training in problem-solving skills.

“Group therapy can be extremely helpful,” adds George Fisher, MD, PhD, an associate professor of Medicine at Stanford University in Palo Alto, California. “People with long-term cancer often feel alienated from others. Group therapy allows them to talk about their feelings and mingle with people who feel the same.”

Ultimately, meeting the psychological challenge of chronic cancer requires a lot of perspective-taking and compartmentalizing, Passik says. “Suddenly, you want to live every moment of every day,” he observes. “But this is just not possible. You can’t live in the moment all of the time.

“You need to cultivate being involved in life with enough denial to put the cancer at arm’s length.”