Suvivors with chronic disease can face ongoing challenges.
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. When John Elliott was diagnosed with the aggressive brain cancer glioblastoma multiforme in 2004, he was told he had 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”: for instance, 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 (see sidebar). 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.”
Recently approved cancer drugs, often referred to as “targeted therapies,” are contributing to increased survival rates, says George Fisher, MD, PhD, an associate professor of Medicine at Stanford University in Palo Alto, Calif. Targeted therapies refer to drugs that disrupt biochemical pathways that tumors rely on to grow. By targeting key molecules in these pathways, the drugs tend to be less toxic to noncancerous cells (although they can have other side effects).
Also, for some drugs, patients must continue their use for years or even indefinitely.
Targeted therapies have been extraordinarily effective for some rare diseases. For instance, imatinib (Gleevec) achieves remissions in the majority of patients with chronic myelogenous leukemia and also is effective against gastrointestinal stromal tumors, or GISTs, an uncommon cancer. Patients with more common tumors have also benefited from targeted therapies. Some recent successes include bevacizumab (Avastin) for colon, lung and breast cancers; erlotinib (Tarceva) for lung cancer; cetuximab (Erbitux) for colon and head and neck cancers; and sunitinib (Sutent) and sorafenib (Nexavar) for kidney and liver cancers.
Many patients on these medicines can live for years — perhaps indefinitely — with manageable side effects. “Targeted therapies have been extremely successful in some patients, converting their disease from a terminal to a chronic condition,” says Fisher, adding, “There are many more tumors in which these agents will likely be effective.”
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 (known as “comorbidities”); 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, a palliative medicine specialist, and colleagues including Kornblith found that cancer patients had on average five psychological and physical distress symptoms to deal with on a daily basis. Yet today, 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.”
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.
“Even with cancer survivors, 5 to 20 percent or more, depending on the cancer diagnosis and how long ago they were treated for cancer, will be negatively impacted by the cancer experience and will experience psychological distress one year or more after treatment,” says Kornblith. “Although their cancer and treatment may have been years ago, cancer-related thoughts, feelings and problems may continue to appear throughout their lives and impact quality of life.”
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 problem-solving training.
“Group therapy can be extremely helpful,” adds Fisher. “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.”
In addition, cultivating hobbies and new interests can help bring a sense of worth and direction to the life of a person in a long-term cancer battle, says Passik. That’s a strategy Elliott, who battled his deadly brain tumor with a regimen of temozolomide (Temodar) for three years, says he pursued out of necessity.
A mechanical designer/engineer from Aiken, S.C., Elliott never returned to work after his diagnosis because he no longer trusts his intellectual acuity. Instead, he now focuses his time on developing new and old interests like artistic ironwork, gardening and volunteer work with his church. “Now I spend my time doing things I like to do instead of things I have to do,” he says.
“The people who do best are those who don’t battle the disease but dance with it,” says Fisher. “That means you have to be flexible and you have to know and accept your limitations. You have to allow people to help you, but without surrendering to the disease.”
Lorber dances with his ongoing disease every day in his Long Island, N.Y., home, as he swallows 150 milligrams of Tarceva for the tumor that continues to reside in his lungs. Facing his situation squarely — by helping others with lung cancer — has yielded a sense of purpose and satisfaction despite his uncertain situation.
“I felt that I was mentally stable, so I felt that I could reach out to others and share my experiences,” he says. “If you don’t have [cancer], you don’t understand. You can’t relate in the same way.”
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 the time.
“You need to cultivate being involved in life with enough denial to put the cancer at arm’s length.”
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.
The people who do the best are those who don't battle the diesease but dance with it. You have to allow people to help you, but without surrendering to the diesase.