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From the shock of the cancer diagnosis onward, depression can take its well-documented toll on patients. Even patients who appear to pack away their fears during the grinding treatment journey to becoming cancer-free concede that when the regimen ends, they unspool emotionally.
There has been less attention paid to the disease’s emotional impact on spouses. They, too, can become depressed. But with the roles of caregiver and cheerleader thrust upon them, they may feel constrained about expressing their darker feelings.
Now a new analysis finds that within two years of a cancer diagnosis, the pervasiveness of depression in patients and their spouses tends to drop back to roughly the same levels as in the general population, only to be replaced by another mind-demon: anxiety, which can even intensify as time passes.
The analysis, which looked at 43 studies involving 51,381 patients with a range of cancers, found that over all, nearly 18 percent of patients experienced serious anxiety two to 10 years after their diagnosis, compared with about 14 percent of the general population. But in a cluster of studies that looked at couples, anxiety levels in that time frame grew to as high as 28 percent in patients and 40 percent in their spouses.
“Anxiety is a persistent problem long after the cancer has been diagnosed,” said Dr. Alex J. Mitchell, the lead author of the study, which appeared in The Lancet Oncology, and a senior lecturer in psycho-oncology at the University of Leicester in England. Psycho-oncologists, often based at cancer centers, look at the psychological and social effects of cancer on patients during and after treatment.
Unlike depression, anxiety has not been looked at extensively in the long-term cancer population, and even less so in partners. “It appears to be at least equal and perhaps more of a problem for spouses than patients,” Dr. Mitchell said. “But at least in the U.K., we’re poor at helping family members when the patient is affected.”
People who have not confronted a life-challenging illness may be perplexed by the residual anxiety in patients, long after they have successfully completed treatment.
“They think that when it’s over, it should be over,” said Jane Hyman, 66, a retired elementary school principal from Sharon, Mass., who was treated for breast cancer 16 years ago. “But the downside to being further out is that I’ve known many people who have had cancer more than once. “
Her body works like an unconscious calendar. In early June, she becomes edgy and nervous and begins staying awake till 2 a.m., reading. Then she and her husband check their real calendars and, sure enough, her annual checkup is just a few weeks away.
Dr. Laura B. Dunn, a professor of psychiatry and director of psycho-oncology at the University of California, San Francisco, said that although cancer is increasingly labeled a chronic illness, “it’s different from arthritis in that it’s more of a chronic threat. Some of us are wired to be attuned to threat.” The anxiety is understandable, she said, because “no one can guarantee you a cancer-free survival.”
“Some people can say, ’Yeah, it might recur, but I can’t control that,’ and they live their life anyway,” she continued. But others, because of genes, past experience or temperament, have more difficulty doing that, she said, and “the anxiety may not decrease over time.”
Dr. Mitchell said that in his clinical practice, key predictors of anxiety in family members included whether a caregiver felt out of control and unable to participate in the patient’s care; witnessed an unexpected or unpredictable deterioration of a loved one; and “transitioned from being in an equal relationship to being a caregiver, a role you didn’t ask for.”
In at least two of the studies, more women than men turned out to have greater rates of anxiety. In a prostate cancer study, more spouses than patients experienced it, while in a study of gynecological cancers, the patients tended to be more anxious than their spouses.
But those results may reflect, in part, that so many men are raised not to be forthcoming about feelings like depression or anxiety. “My husband keeps his game face on,” said Casey Malanga, of Milton, Mass., who is 33 and was treated for breast cancer in 2010. “He was never one to gush about his emotions. I think he does worry, but it calms his worry to say, ‘I know what they’ve done is still working, and they are always monitoring you.’ ”
A couple’s ability to manage anxiety may be more challenging when men are the patients, said Dr. Dunn, because the husband “doesn’t want to worry his wife with every ache and pain, so he doesn’t mention them. And he doesn’t want to be micromanaged over every little symptom. But if the wife finds out, she’ll worry even more because he didn’t tell her.”
The analysis did not identify certain cancers as having more psychological impact than others. Rather, the burden of the disease on an individual patient, including symptoms and treatment complications, was more telling than the type of cancer, Dr. Mitchell said.
Although the Lancet Oncology study did not look at the effects of cancer on children, other studies have noted the considerable emotional turmoil they can experience. Risk factors were variable, including the severity of the parent’s disease, the depression exhibited by the parents themselves, and the age of the child — teenagers tended to have more psychosocial problems than younger children.
There were drawbacks to the current analysis. Most of the studies had little information about the precancer mental histories of the patients, for example, and they used variable methods to screen for depression and anxiety. But the findings underscore the need to address the long-term consequences of anxiety and other mood disorders among patients and those closest to them.
“Even in an era of scarce resources, hospital-based psycho-oncology programs should probably not be exclusively reserved for patients,” said Dr. Ilana M. Braun, chief of the adult psychosocial oncology division at the Dana-Farber Cancer Institute in Boston Such programs, she says, should “be made available in some capacity to those in remission and to loved ones impacted by cancer in their family.”