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Gilda's Club offers yoga sessions, which can reduce stress and improve the immune system.

Hidden illness afflicts 1 in 4 cancer patients and their caretakers

by Alison Flowers and Colleen M. Padia
Dec 09, 2008


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A commemorative quilt hangs in Gilda's Club Chicago, featuring the hopeful messages of those affected by cancer.


Alison Flowers, Colleen M. Padia/MEDILL

Chicago's own Gilda's Club on N.Wells Street supports "the whole family," one social worker says. 


Alison Flowers, Colleen M. Padia/MEDILL

Roz Wattel discusses her work with relaxation therapy and how it helped her fight her own battle with cancer.

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Research shows 'talking it out' can really work

Depression fell significantly more in a group of patients with cancer that worked with nurses trained in depression management compared to patients who received traditional treatment, according to a new study from the University of Edinburgh.

Both groups had been diagnosed with depression, but the patients who were seen by the specially trained nurses reported less anxiety and fatigue than their counterparts. The researchers detailed this new approach in a 76-manual called “Depression Care of People with Cancer,” which emphasizes proper use of antidepressants, the importance of staying active and problem-solving skills.

Lynne Wagner, director of Supportive Oncology at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University at NMFF, said that the study is well done and offers valuable ideas for cancer treatment centers.

“The prevalence of depression is higher among cancer patients than the general population,” Wagner said. “Treating it is extremely important for a number of reasons -- it may compromise a patient’s overall health or follow-up care.”

Lurie has a team of clinical psychologists and social workers in place to help patients deal with depression, either through treatment with medication, therapy or referral to support programs like Gilda’s Club or the Cancer Health Alliance of Chicago. The center’s oncologists and oncologic nurses are also mindful of patients’ emotional well-being, said Wagner.

“I’m lucky that our leadership believes that psychosocial care is important to cancer care,” she said.

Support opportunities at Lurie are often subsidized through philanthropy, according to Wagner, but funding at other cancer centers could be a major hurdle for them to offer such services.

“Billing and reimbursement for mental health care is not at all comparable to medical care,” she said. “You generally lose money when you treat depression or anxiety in a center setting.”

Another obstacle for implementing recommendations of the study for some centers could be that physicians and nurses are already under pressure to be mindful of tertiary issues, like giving flu shots during flu season or looking for signs of domestic violence, both of which are done by oncologic nurses at Lurie.

“Nurses will say, ‘Oh great you want me to do one more thing,’” Wagner said.

However, emotional well-being is important to patients with cancer, even after their treatment is complete.

“Surgeons are baffled that patients coming in for their six-month follow-ups are depressed,” Wagner said. “To have to figure out who you are and what life means to you is a difficult journey.”


When her grandmother was diagnosed with lung cancer, Daniela Schreier was struck by the cold, removed and unapologetic medical environment surrounding her loved one.

Now a clinical psychologist, author and assistant professor at the Chicago School of Professional Psychology, Schreier treats cancer patients and their caregivers for depression. She believes it’s a vital part of the healing process that her grandmother missed.

“I can state straightforward there was no medical consideration for a potential depression and/or referral for psychotherapy,” Schreier said. “Often times it is the nurses that talk more to the family and patient than the docs.”

It was a radiation oncology nurse who asked Roz Wattel, a social worker and breast cancer survivor, this simple question: “Are you depressed?”

“And I said, ‘Yeah, I think I am. …When you are in your treatment, you're surrounded every week or every month or every day by medical people, and then all of a sudden, boom - you are sent out into the world with 'I'll see you in three months,' and you don't feel like you have that safety net.”

Depression affects up to 25 percent of cancer patients, according to the National Cancer Institute. Left untreated, depression can compromise the immune system.

“It’s a double hit for people,” explained Terrence Koller, executive director of the Illinois Psychological Association. “Depression is a life-threatening illness, and it accounts for some pretty serious side effects, such as loss of work.”

The days lost from work for depression exceed the days lost due to cancer, according to Koller. He said people lose an average of 26 days a year for depression versus 17 days for cancer.

Yet, loss of work is just one lifestyle change among many that can result from a cancer diagnosis and potentially lead to depression. The interruption of life plans, fear of death, changes in body image and self-esteem, as well as financial concerns are key contributors to developing this illness, according to the National Cancer Institute.

“We must remember that a cancer diagnosis can be very devastating,” Schreier said. “We want to address that early on, the anxiety and the feelings of depression.”

Schreier contends that the earlier the depression is detected, the more effective the treatment. Psychotherapy treatment and psychotropic medication are typical approaches to treating depression, and it should not interfere with the treatment for cancer itself, according to Koller.

“We want to have a crisis intervention like we would for anyone else,” Schreier added.

An important step in this process, however, is making sure oncologists recognize signs of depression. In Schreier’s experience with her grandmother, no one made the necessary referral.

“Everybody tries to treat what they should be treating,” Schreier said. “But nowadays, they are making advancements. Doctors are trained to ask about depression.”

Koller’s experience has been more promising. He said that professionals such as medical psychologists often work in oncology units.

“Oncologists are more than willing and have shown a lot of ability to refer to psychologists for help for these patients,” he added.

But another, more fundamental dilemma confronts these professionals. How do they know the difference between a major depression and the normative grief and shock that follows a cancer diagnosis?

The simple question “How sad have you been in the last two weeks?” has been shown to be an effective way to differentiate sadness from depression, according to Dr. Jamie Von Roenn, medical director of the Northwestern Hospice and Palliative Care Program.

“I also talk to patients about how they spend their time,” she said. “A loss of enjoyment of normal activities is a major hallmark of depression. In advanced cancer, hopelessness is probably the best indicator.”

“I think what distinguishes [depression] is how long it goes on,” said Laura Grimes, a Chicago-based clinical social worker who specializes in grief work for cancer patients and their families and partners. “It’s all about how debilitating it is. …it’s a very gray area, though.”

What Grimes sees as the worst part of a cancer diagnosis is the isolation people can feel. This is why she thinks it is important to connect them to a group with members who have similar needs and experiences.

One such group is Gilda’s Club, a worldwide organization named for comedienne Gilda Radner, who died of breast cancer 1989, with satellite “clubhouses” that provide social support for people with cancer and their families and friends. It hosts new member orientations several times a week, and staff members will then recommend a support program tailored to what the member needs.

“Our support groups are run by licensed facilitators, but [the participants] get their support from each other,” said Gilda’s Club program manager Cathy Silver. “We consider everybody who’s been through this the experts.”

Gilda’s Club also seeks to treat the whole family, according to Grimes, who has run groups for the organization.

“Everybody [in the family] carries their own guilt,” she said, citing that patients may feel guilty for feeling like they are monopolizing everyone’s time. They can “feel like a burden.” Meanwhile, kids may have a hard time admitting to their own feelings when they see their parents struggling, Grimes said.

Caregivers, too, may experience guilt for wanting to consider their own needs. This group is often overlooked when it comes to a cancer diagnosis, according to the experts.

Schreier described her work with a young woman whose mother is in the final stage of lung cancer. Her mother has been prescribed anti-depressants, but doesn’t take them, which also affects her daughter’s well-being.

“Certainly she is very depressed,” she said. “Family members who are very stressed out, sometimes they are left out.”

But not all caregivers, or even people with cancer themselves, experience depression. It is not unusual for a person who is originally diagnosed to grieve for a month and go through a minor depression, according to Koller.

“People become sad, but [they] deal with it,” Schreier noted. “But not everybody becomes depressed.”

Those who have been depressed before their cancer diagnosis, however, generally will become more depressed, according to Schreier.

Major depressive disorder affects almost 15 million American adults, with an average age of onset is 32, according to the Depression and Bipolar Support Alliance. Age of onset for cancer, as well as the likelihood of developing it, depends heavily on family history, much like depression.

An additional stress to dealing with both cancer and depression is juggling finances. Treatment can be very expensive, according to Koller.

Depending on the insurance, four to 30 hours of psychotherapy treatment may be warranted, according to Schreier.

“Some of my clients are entitled to 50 sessions a year. Some don’t get any,” she said.

For those people with cancer who experience hopelessness, Schreier can teach them emotional coping skills. She will tell them that emotions start, but that they also end.

“They’re not eternal,” Schreier will say. “Replace ‘I am helpless, I am useless, I am going to die anyway’ with ‘I can fight this. I can do this. I have reason to live.’”