By Shari Roan
Illustration by David Senior
In the days that followed the discovery of a mass in her abdomen, Judith Carden was stunned and frightened. After awakening from surgery and learning she had ovarian cancer, her feelings vacillated, and she felt determined to fight. But midway through her chemotherapy treatments, she was sad and exhausted.
That was just the beginning of an emotional journey that has paralleled and, to some extent, overtaken Carden's physical battle with cancer. Despite superior medical care and a good prognosis, the retired nurse's life was upended by a range of baffling, intense emotions. Even after completing treatment, a bout of depression hijacked her return to a normal life.
"The anxiety and depression are so bewildering," says Carden, who was 67 when she was diagnosed in 2008. "You feel frustrated because in your mind you're saying, 'I'm so lucky to be alive.' I wanted to get out and do things. But I wasn't able to."
The emotional toll of cancer, such as Carden experienced, can be devastating for patients. Addressing that toll has emerged as a vital aspect of treatment and recovery, says Anne Coscarelli, PhD, director of the Simms/Mann UCLA Center for Integrative Oncology, which helps patients and family members focus on wellness during cancer treatment and recovery. New research shows a cancer diagnosis can reroute an individual's emotional life journey and even affect the success of treatment and survival.
"When I started working in the field 32 years ago, there was little attention paid to the psychological issues people had during treat-ment," Dr. Coscarelli says. "The focus was on how to get the cancer under control. Now we're paying attention to the whole person with cancer. There is a greater awareness that cancer affects more than just the body."
Depression, anxiety, fear and sadness are common emotions following a diagnosis, according to the American Cancer Society (ACS). Psychological distress tends to affect men and women equally, and is often more common among younger people with cancer and those who endure long and complicated treatments. While some people experience minimal angst, a majority of patients experience what is often called "reactive depression," a period of anxiety and worry that eventually eases as the patient adjusts, according to the National Cancer Institute (NCI). Still others face more serious emotional distress, such as profound sadness that can last for weeks or months. About one-quarter of cancer patients develop clinical depression, the ACS estimates - a rate that that is two-to-three times higher than in the general population.
"Sixty-six percent of cancer patients have what we call an adjustment disorder," says David K. Wellisch, PhD, professor of psychiatry and biobehavioral sciences. "It's very common. The issue becomes, is it transient, or does it persist and become clinical depression?"
People who have had a previous bout with depression appear more likely to suffer depression following the diagnosis, while those who seem resilient to life's hardships tend to cope somewhat better.
"The style to which people are involved in life psychologically is going to be very much the style to which they react to cancer," Dr. Wellisch says. "If they are a chronically anxious person, then the reaction is going to be severe anxiety. If one is a depressive type, they are likely to be depressed. If they are active copers - gathering support and actively approaching their problems - that is how they will likely respond."
But it's a myth that emotional suffering is an inevitable part of the cancer experience, says Annette Stanton, PhD, professor of psychology and senior research scientist at the UCLA Norman Cousins Center for Psychoneuroimmunology. "The first myth is that depression is a natural consequence of cancer. But most people, in fact, do not get clinically depressed," she says. "The second assumption is that as you recover, your depression will recover, too. We don't really know that that's true."
Since it's not always clear who will become emotionally distressed or how long those feelings might last, a growing number of experts refer patients to places like the Simms/Mann Center, which is part of UCLA's Jonsson Comprehensive Cancer Center, for psychological support during cancer treatment.
That emotional fallout from cancer is understandable. Despite greatly improved survival rates from even 15 years ago, cancer remains a feared disease. And cancer treatment, while vastly improved, is typically harsh and prolonged.
Tests. Biopsies. Surgery. Radiation. Chemotherapy. Physical therapy. Pills. Prosthetics. Transfusions. It can be a daunting experience for even the most stout of heart, says Dr. Coscarelli. She refers to the emotional fallout as Coscarelli's Law: "For every physical effect, there is an equal reactive psychological effect."
Cancer upends one's current and future plans in the rudest fashion. Suddenly, an individual is forced to confront mortality. Changes in physical appearance can diminish self-esteem. People worry that they will become a burden to their loved ones. Work and financial insecurities emerge. Family members are affected. Dealing with the changes creates constant stress.
"There are all these other things that happen to people as a result of a cancer diagnosis," Dr. Coscarelli says. "Their lives are turned upside down."
Then there is the impact of treatments that cause pain, sap energy, dull the taste of food and interrupt sleep. "Cancer clearly is a threat to one's survival," says Michael Irwin, MD, director of the Cousins Center for Psychoneuroimmunology. "To survive, the patient has to undergo these treatments that are quite severe and interfere with his or her ability to enjoy life."
Patients who are experiencing psychological distress should first undergo a comprehensive physical evaluation, says Thomas Strouse, MD, medical director of the Stewart and Lynda Resnick Neuropsychiatric Hospital at UCLA and an expert in the psychiatric aspects of medical illness and cancer-pain management. About half of the patients referred to him for possible depression actually have under-managed or unmanaged pain or other side effects of treatment.
"It's easy for the clinician to call it something like depression, but that may not correctly or helpfully summarize what's really happening," Dr. Strouse says. "I tell the patient, 'Let's get your pain under control and talk again in a few days.' Often, what I find myself doing is not prescribing Prozac but helping optimize the anti-nausea regimen or the anti-pain regimen or the anti-fatigue regimen."
There is some evidence that depression can be caused by the cancer itself. Inflammation, triggered by the immune system as a natural response to illness, alters substances in the brain that play key roles in mood and cognition, Dr. Irwin says. The process involves over-production of cytokines, protein messengers that regulate the immune system and, as researchers have only recently learned, affect these neurotransmitters.
"A lot of immunologists were skeptical that these cytokines would have any effect on the brain,"Dr. Irwin says. "Indeed, these effects are robust and immediate. They actually can activate changes in the brain and the central nervous system that produce these behavioral changes."
"Understanding who is at risk to over-produce inflammatory cytokines following cancer diagnosis and treatment is critical. A past history of depression and sleep disturbance may make people sensitive to activation of the inflammatory process and also increase the chances of having a depression," Dr. Irwin says. "For some people, cancer treatment activates these biological signals, and they can't easily be shut down."
Inflammation can also contribute to other common side effects of cancer treatment that occur with depression, including fatigue and cognitive complaints. Research conducted by Julienne Bower, PhD '98, associate professor of health psychology and a research scientist in the Cousins Center and UCLA's Jonsson Comprehensive Cancer Center, has shown that inflammation may underlie the persistent fatigue that occurs in approximately one-third of cancer survivors.
The cancer-depression connection is a two-way street, it seems. Resolving psychological distress may affect recovery, remission or survival, Dr. Wellisch says. "Depression or anxiety can seriously interfere with one's ability to tolerate treatment. It interferes with the quality of life of the family. It interferes with a patient's ability to readjust and go on without immobilizing fears that he or she is going to get cancer again."
There is also evidence that poor mental health has an independent effect on the outcome of treatment and survival. A 2012 study, published in the journal PLoS, looked at 217 cancer patients and found 23 percent of people were depressed. Those people did not survive as long as similar patients who were not depressed, even after doctors controlled for factors related to their disease.
The depressed patients also had different patterns of cortisol secretion. Cortisol is a hormone produced by the adrenal gland in response to stress. Research has shown chronic stress causes the body to become less sensitive to cortisol, and the hormone loses its effectiveness in regulating inflammation.
The potential for depression to affect treatment outcomes has led some major medical centers, such as UCLA, to provide mental-health screenings to many patients as a routine part of cancer care. Dr. Irwin calls such an emotional assessment the "sixth vital sign" - one of a handful of key measures that show how a patient is faring.
A mental-health check-up might be helpful at the conclusion of cancer treatment, too. Perhaps one of the most startling realizations to come out of research on cancer and psychological distress is that many people hit the mat, emotionally, in the recovery phase.
That's what happened to Carden. She embraced six cycles of chemotherapy and seven weeks of daily radiation. "I felt I had a job to do," she says. "It was like, wow, I'm in there fighting. I can do this. It's a good feeling."
But months after finishing treatment, a friend prodded her to seek counseling at the Simms/Mann Center. The once-confident clinical-research nurse had become withdrawn and lacked the energy to pursue activities she once enjoyed.
"When I became untethered from treatment, I kind of fell apart," she says. "I became less confident and depressed. I wasn't in control anymore."
After the crisis has passed, people with cancer realize that their lives have changed, says Josephine McNary, MD, a psychiatrist at the Simms/Mann Center. From 60-to-70 percent of people who seek psychological treatments do so after completing cancer treatment.
Carden was dismayed that some physical symptoms, such as fatigue, lingered long after her last cancer treatment. An NCI-funded study, published in October 2012, found that one-third of cancer survivors have mental problems or physical side effects such as pain or fatigue that affect emotional well-being long after the cancer is treated. Ten percent of cancer survivors reported poor mental health compared to 6 percent among adults without cancer, according to the study, published in the journal Cancer Epidemiology, Biomarkers & Prevention.
"We talk about the new normal of life after cancer," Dr. McNary says of the post-cancer emotional recovery. "People who expect to get their life back in the same way and resume life as normal - they are the ones who have a hard time adjusting. They don't realize it's a life-changing experience."
At the Simms/Mann Center, experts identify the source of the patient's distress and help them establish equilibrium for themselves. A wide variety of psychological and social support is offered because people differ regarding what they like and need, Dr. Coscarelli says. How an individual copes and what she needs depends on age, life stage, other events going on, past history of depression and experience in the past dealing with trauma or difficult circumstances, among other factors. "It's an individual equation for each person," she says.
For people diagnosed with major depression, psychotherapy and medication are typically recommended. More cancer patients would likely benefit from medications, such as antidepressants, according to the NCI; about 25 percent of cancer patients are depressed, but only 16 percent receive medication for depression.
Both psychotherapy and medication can be effective, says Dr. Stanton, who recently conducted a study, published in the Journal of the National Cancer Institute, on the treatment of depression in cancer patients. Among the various types of psychological treatments, one form called cognitive behavioral therapy - designed to help people understand and manage the thoughts and feelings that influence their behavior - seemed most effective.
But more research is needed to determine if cancer patients with depression would benefit from a more-specialized approach and what factors increase the risk of developing depression, she says. For example, Dr. Irwin and Dr. Stanton each have NCI grants to study risk factors, such as sleep disturbance and specific coping processes, that may lead to depression in breast-cancer patients.
The Simms/Mann Center provides individual counseling and support groups for patients and family members. "It is about identifying the problem, intervening and finding resources acceptable to the family," Dr. Wellisch says. "It's more acceptable now to admit you are stressed, anxious or depressed because you have cancer. It's not such a shame."
In addition to counseling, the center holds lectures and classes on nutrition, art therapy, mindfulness, relaxation, meditation, guided imagery, yoga, tai chi and other forms of exercise. According to Dr. Irwin, activities that involve both movement and a meditation, such as tai chi, may be especially helpful to reduce inflammation.
Mindfulness therapy - a practice derived from Buddhism that focuses on looking at life with an open and nonjudgmental attention - is also emerging as a powerful tool to steer people through the rigors of cancer treatment, Dr. McNary says.
Patients at the Simms/Mann Center who are interested in complementary medical therapies - such as vitamins, herbs or Eastern medical practices like acupuncture - can also have a consultation with a medical doctor who specializes in those therapies. Complementary medical practices often give patients a feeling of taking control of their battle with the disease, Dr. Coscarelli says. But safety should be considered. For example, St. John's wort, an herb touted for its antidepressant properties, can dilute the effectiveness of certain cancer drugs.
"Patients have known about and embraced complementary and alternative therapies, Dr. Strouse says. "Nowadays, doctors have a much more collaborate outlook. We want to know about it, too. We want to make sure it's not going to hurt you. We want to make sure there aren't drug interactions, for example, that might be harmful. But we welcome it."
Most of the services at Simms/Mann are free, the result of philanthropic support from the community and patient donations. While the center can't produce statistics on the number of lives saved, patients often report that treatment for their psychological distress was essential to their recovery, Dr. Coscarelli says.
She recalls a member of the center's board of directors who put it this way: "Medicine is not enough."
"I think that phrase coins what this center means to people," she says. "We provide these services because we think medicine alone is not enough. The goal is to make it easier for people on what is already a difficult journey."
It was with such support that Judith Carden found her way out of the long and dim tunnel of cancer and depression. She was counseled at the Simms/Mann Center, began taking an antidepressant medication and started exercising and doing volunteer work.
"It was so helpful to speak to people who understand what you're going through," she says. "I got myself out of my shell and back out in the world. I have days when I'm exhausted. But I've learned how to deal with it and not feel guilty or isolated or fearful. Cancer is a life-changing experience. And now, I feel very grateful for my life."
Freelance writer Shari Roan covered medicine and healthcare for the Los Angeles Times.
About one in four people with cancer will experience clinical depression, a level of depression that causes significant distress and interferes with daily functioning. The symptoms include:
Some of these things, such as fatigue, can be caused by the cancer treatment. But if you have five or more of these symptoms every day for two weeks or more, talk to a healthcare professional.
Source: American Cancer Society