OUTWARDLY, 2017 looked like a good year for Justin Birckbichler. He finished chemotherapy for stage IIB testicular cancer in January, a few months after his diagnosis and surgery in October 2016 at age 25. By March, he was showing no evidence of disease. That fall, he started a new teaching job at an elementary school in Spotsylvania Courthouse, Virginia.
But inside, Birckbichler felt unsettled. He had anxiety about upcoming scans and experienced mood swings. He met with a counselor in the summer but felt she couldn’t relate to his cancer experience. In October, the night before the first anniversary of his surgery to remove a testicle, he experienced a full-blown panic attack. He was watching an episode of the TV series Stranger Things in which a doctor was explaining the anniversary effect—a phenomenon in which someone experiences distress surrounding the anniversary of a traumatic event. Birckbichler remembered his own surgery anniversary, and his anxiety flared.
It wasn’t until December that Birckbichler, who had experienced severe clinical depression as a high school student, sought more help. “I’m weirdly obsessed with Christmas,” he says, but that year the song Jingle Bell Rock didn’t even make him smile. At his next appointment, Birckbichler told his oncologist how he was feeling and got a prescription for antidepressants.
For Birckbichler and many other cancer survivors, mental health is often relegated to the sidelines after a cancer diagnosis. Treating the cancer itself is the focus for patients, health care providers, family members and friends. Yet research suggests that as many as 1 in 4 cancer patients experience depression, described by the National Institute of Mental Health as a mood disorder in which people experience symptoms such as sadness, anxiety or hopelessness for most of the day for at least two weeks. People who are depressed may feel irritable, empty or have difficulty staying interested in activities they previously loved. A cancer diagnosis can trigger these feelings: An analysis of more than 4,000 people with cancer in Germany found they were five times more likely to be depressed than the general population, according to findings from a 2017 study published in the European Journal of Cancer. And the risk of suicide in cancer patients is more than four times that of the general population, according to a study in the Jan. 14, 2019, Nature Communications.
For cancer patients, untreated depression can mean they stop taking prescriptions, skip their cancer treatment or start engaging in behaviors like smoking or overeating that can harm their health. Because untreated depression is widespread, researchers are seeking ways to recognize it sooner in cancer patients and treat it more effectively, while cancer survivors who have experienced depression are trying to raise awareness to help others.
Efforts to Recognize Depression
Depression among cancer patients in treatment is often hard for health care providers to notice because many of its symptoms are nearly identical to cancer symptoms and side effects: weight loss or gain, sluggishness, changes in eating or sleeping habits, and lack of interest in usual passions, says Deepti Chopra, a psychiatrist at the University of Texas MD Anderson Cancer Center in Houston. Chopra adds that psychiatrists can detect depression despite the overlap in symptoms.
Paul Craft / Julia-art / Shutterstock.com / Photo Illustration by SPARK Publications
In 1997, the National Comprehensive Cancer Network (NCCN) released a screening tool known as the NCCN Distress Thermometer to evaluate people’s emotional state and stress levels. This tool has been updated regularly in the past two decades; in July, the NCCN announced that the free screening tool had been translated into 46 languages. As part of the Distress Thermometer, patients are asked to rate their level of distress on a scale of 0 to 10 and to complete a checklist indicating whether they’re experiencing a number of family, emotional or physical problems. “It’s similar to taking someone’s vitals, their blood pressure, their heart rate,” says psychologist Christian Nelson, chief of the Psychiatry Service at Memorial Sloan Kettering Cancer Center in New York City. Since 2015, the Commission on Cancer, a consortium of professional organizations that sets standards for cancer care, has required its accredited cancer centers and institutions to screen all patients for distress—a term that includes depression and anxiety.
At St. Luke’s Hospital of Kansas City in Missouri, a distress screening is given as part of every patient visit, including treatment appointments, says psychologist Savannah Geske. In a July 2019 paper in the Journal of Psychosocial Oncology, Geske and psychologist Rhonda Johnson, also from St. Luke’s, reported that using the NCCN Distress Thermometer resulted in a 69% increase in the number of patient referrals to supportive services, which included counseling, occupational therapy and physical therapy. During the COVID-19 pandemic, St. Luke’s has continued to use distress screening, and after a slight decrease in patient referrals in spring 2020 due to the lockdown, the number of referrals to supportive services has returned to previous levels, Geske says.
Caregivers of people with cancer have mental health care needs.
Many cancer organizations offer support tailored to caregivers, who can experience physical and emotional strain when their loved one is diagnosed with cancer. In 2009, Linda Hoetger’s husband was diagnosed with an aggressive prostate cancer that had spread to his lymph nodes. Before his diagnosis, she had experienced both depression and anxiety. After his diagnosis and treatment, her depression symptoms returned stronger than before. “It’s hard,” says Hoetger, who lives near Columbus, Ohio. Even when her husband went into remission, she says, the experience “messed up my sleep horribly.”
Over the years, she tried devoting herself to favorite activities like crafting and scrapbooking. She also participated in support groups, but she found other people’s experiences too different from her own to be helpful. In early 2020, Hoetger began seeing a psychiatrist, who prescribed medication that has helped with depression.
Teresa Ipong-Garcia, a licensed marriage and family therapist who is also the group facilitator for the organization Latinas Contra Cancer, has led cancer support groups in the San Francisco Bay Area for nearly 20 years and has implemented culturally sensitive mental health programs for Latino survivors and their families. She has seen firsthand the importance of supporting a survivor’s caregivers and family during diagnosis, treatment and survivorship. A loved one’s cancer may impact a caregiver’s hopes and dreams for the future and create uncertainties, fear and sadness. “At times, caregivers themselves have a tendency to minimize these feelings because the caregiver is not the one facing cancer,” Ipong-Garcia says.
Still an Unmet Need
Not all cancer survivors get the help they need for depression. When Sharon Rivera-Sanchez of Richmond, Virginia, started losing her hair during treatment for triple-negative breast cancer in 2015, she felt as if she was on a dark and lonely road. Except for a small circle of family members and a close friend, she says, “I don’t feel like anybody was interested in my mental health.” When she spoke to a counselor about how upsetting it was for her to sit in the treatment waiting room, she says the counselor told her to stop freaking herself out.
For some survivors, the darkest times occur after treatment is completed. “We’re doing so much better [at helping people] during treatment,” says Rebecca Palpant Shimkets, a Georgia-based public health consultant working in behavioral health. “We have a long way to go post-treatment.”
In 2001, Shimkets was diagnosed with thyroid cancer at age 29. The surgeon who removed her thyroid gland said her cancer was highly treatable. Still, Shimkets was not prepared for the depths of depression that followed the surgery and radioactive iodine treatment intended to destroy any remaining cancer cells. Finding the right dosage for the hormones she needed to take after surgery led to weight fluctuations and mood swings. And although she was unemployed after 9/11 and felt like she had lost her sense of purpose, Shimkets still didn’t recognize the seriousness and severity of her depression, despite having a background in psychology. It took concerned family members and friends to set her on a path toward psychological healing that included counseling, medication and the support of loved ones.
Researchers are looking into how depression may be linked to specific cancer types and their treatment. Close to half of patients with head and neck cancers—which include oral, salivary gland and throat cancers—report symptoms of depression, according to the American Head and Neck Society. Along with side effects, treatments for these cancers can affect how people look; surgeries that remove tissue or bone can alter a person’s face, and both radiation and surgery can create visible scarring. These changes, Chopra says, along with the potential effects on a person’s ability to speak, eat and drink, can alter how people feel about themselves.
Depression can also affect the way people experience their cancer symptoms and treatment. A study published in November 2019 in the journal Lung Cancer found that one-third of patients who were recently diagnosed with advanced non-small cell lung cancer had moderate or severe symptoms of depression. Those with severe depression were more likely to experience pain and think their cancer treatments wouldn’t help.
Researchers are still learning about the different ways people belonging to racial and ethnic minority groups experience and report depression. Amy Zhang, a cancer researcher at Case Western Reserve University in Cleveland, and her colleagues interviewed African American cancer patients with and without depression, as well as white cancer patients with depression. Their pilot study, published in the Journal of Mental Health in 2015, found that African Americans with depression often did not respond to questions in a way that would identify them as being depressed. For example, Zhang recalls interviewing some African American patients who “say they are not depressed, but they’re crying.” Developing more culturally sensitive screening methods may increase the number of people diagnosed with depression so they can get the help they need, Zhang says.
Treatments Are Available
Many kinds of support are offered for cancer survivors experiencing depression, and most people who are diagnosed and treated are able to successfully manage their depression, according to Shimkets. “People are resilient,” she says. “The saddest part is that people wait so long and suffer for so long.”
The American Cancer Society explains the symptoms of depression and offers tips for how to take care of your mental health and how caregivers can help.
The National Cancer Institute provides an overview of different treatments for depression, from counseling to antidepressants.
Researchers are developing depression treatment strategies tailored to specific groups of people. Nelson says older cancer patients experience “the double whammy of aging and cancer treatment,” which may limit their ability to work, pursue hobbies and continue other activities that give their lives meaning. These adults may describe their depression symptoms in ways that are not detected by distress screening, and in fact, cancer survivors over 65 are less likely to be diagnosed with depression than those in any other age group, Nelson says.
Nelson and a colleague designed a telephone-based psychotherapy treatment aimed at helping patients facing the challenges of cancer and aging. In the January 2019 issue of Psycho-Oncology, they published the results of a pilot trial offering older cancer survivors phone counseling to help them find meaning, develop coping strategies and strengthen their social connections. People who experienced the therapy had lower scores on a depression screening than those who had the same number of phone sessions with a geriatric social worker. Nelson, who is launching a larger trial to further test this intervention, says phone counseling is important because it can reach adults in rural areas who might be experiencing isolation because of their location. “We’ve all seen the benefits of doing things over the phone in the world of COVID-19,” he says.
Phone and internet support efforts are available for cancer patients with a range of ages, backgrounds and cancer types. SHARE Cancer Support, based in New York City, has support groups for breast, uterine and ovarian cancer patients and survivors in English, Spanish and Japanese, and these programs are now available online. The organization also has a helpline offering help in English and 20 other languages. “When a woman is diagnosed, the rug has already been swept out from under her,” says Ivis Febus-Sampayo, SHARE’s chief officer of diversity and inclusion and a three-time cancer survivor. “Imagine hearing that in a language you don’t understand.”
For Rivera-Sanchez, the triple-negative breast cancer survivor living in Virginia, a support group helped her create the social network she needed to deal with depression and other mental health concerns. She felt less alone and could put her challenges in perspective when she heard from others who had experiences similar to hers. Now she has started two initiatives to help other survivors, including an effort to promote diversity in clinical trials called Trials of Color. Her response to feeling down or afraid, she says, is to “try to step on the gas when I’m starting to feel that way.”
For Shimkets, finding meaningful work at the Carter Center Mental Health Program in Atlanta helped with her depression, both after her initial cancer diagnosis and again after a second thyroid cancer diagnosis less than five years after the first. Maintaining social ties is key to mental health, particularly after treatment is over, she says. “When you’re released from treatment, the scaffolding comes down,” Shimkets says of the support systems available during active therapy.
Often, communicating how you feel is the best first step toward feeling better. Once Birckbichler realized things that had once made him happy were no longer doing so, he talked to his doctor and started getting the help he needed. This now includes antidepressants and a therapist—a man whom Birckbichler feels comfortable talking with about his cancer and new concerns that might arise. He also participates regularly in activities that help him feel good, including exercise, writing and spending time outside. And he advocates for testicular cancer awareness and mental health support for cancer patients, survivors and caregivers.
“Cancer is a major life event and a major series of changes,” he says. “We need to continue to build awareness that we are going to go through mental health challenges.”
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