Nearly 16,000 children are diagnosed with cancer in the U.S. each year, according to the American Childhood Cancer Organization. Thanks to advances in treatment, survival rates in general are higher, but for survivors, there can be a hidden cost: their mental health.
A JAMA Pediatrics analysis of several studies found that children, adolescent and young adult cancer survivors have an increased risk of depression, anxiety and psychotic disorders after going into remission compared with siblings and peers who never had cancer.
“For many children and young adults diagnosed with cancer, the entire process can be profoundly traumatic,” Dr. Asha Patton-Smith, a child and adolescent psychiatrist at Kaiser Permanente, tells Yahoo Life. She explains that “facing the possibility of life or death and enduring extended courses of treatment can trigger overwhelming anxiety” and may resemble “post-traumatic stress disorder.”
‘It felt scary to step back into normal life’
Olivia Stern, now 22, was diagnosed with acute lymphoblastic leukemia when she was 12. She remains cancer-free but says that the mental health impact of her treatment lingers. “I have been diagnosed with generalized anxiety disorder, prescribed medication and have been in therapy,” she tells Yahoo Life.
Stern says that “two of the major hurdles of being a survivor that I have had to overcome are my anxiety about relapsing and survivor’s guilt. Every time I find out someone I know dies of cancer, it tends to hit me a lot harder than the average person. I get very fixated on it and spend a lot of time feeling self-conscious about my own life purpose.”
Stern shares that she feels “a very heavy burden to accomplish something since I am one of the lucky ones who survived.” However, she says she doesn’t feel “lucky” all the time because her life as a childhood cancer survivor is “very different from the average.”
Returning to normal life and connecting with peers can be a challenge for survivors. Many children only have “the time and energy to mourn their loss of normalcy” after treatment is over, Dr. Asher Marks, director of pediatric neuro-oncology at Yale Cancer Center and associate professor of pediatrics at Yale School of Medicine, tells Yahoo Life. “We find that our patients struggle to identify with their peers,” he says. “While other adolescents are worrying about homework, sports, fitting in and social media likes, our patients are fighting for their lives.”
That was the case for Courtney Toney, who was diagnosed with primitive neuroectodermal tumor, a rare form of Ewing’s sarcoma, when she was 15. “Things that I would have cared about before seemed trivial and insignificant after facing cancer,” she tells Yahoo Life.
Now in her 30s, Toney says that one of the biggest surprises of ending treatment “was how hard the transition into survivorship was for me. It felt scary to step back into normal life.”
After Toney’s treatment ended, she felt anxious about participating in activities she’d once enjoyed because she was used to being careful about everything she did while in treatment to avoid complications. She found she couldn’t just “turn off” those concerns. Toney shares that she also developed survivor’s guilt when one of her friends died after a recurrence.
Toney says that she didn’t discuss her complicated and “confusing” feelings about life after cancer with anyone because she thought it would be a burden. “Everyone was expecting me to just be happy and excited to be back to normal life,” she says, and she didn’t want to let them down.
Grappling with survivor’s guilt, anxiety and ‘unresolved trauma’
Marks says that “anxiety, depression and loneliness are at the top of the list” of mental health struggles he sees among childhood cancer survivors.
He says there are “a multitude of reasons” for this. Following treatment, many survivors are monitored closely after they are in remission. “Every scan and every blood test comes with the potential to show recurrence of their cancer,” so it’s harder to put the experience behind them.
Stern still worries about the potential health impacts of the cancer treatments she received, even years later. Those concerns include “iron deposits in my heart, my inability to have children or my bones being too frail, all from the damage that chemo caused.”
Although she has not encountered any long-term impacts of chemo yet, she constantly worries that something will go wrong eventually.
How old a child is at the time of diagnosis may impact how likely they are to struggle with their mental health after treatment. Initially, “younger kids bounce back easier than adolescents and young adults,” Marks says.
However, young children who survive cancer may struggle with their mental health years later. “Many of the kids I work with, who battled cancer at a very young age, often present with panic, anxiety or depressive symptoms” in their teenage years, Patton-Smith says. This may be because they are grappling with survivor’s guilt, are dealing with unresolved trauma or experienced cognitive impairment as a result of their treatment.
Elliot Scales was diagnosed with Wilms tumor, a type of kidney cancer, when he was 4 months old. He is now 5 years old and doing well. Elliot’s mother, Myrna, tells Yahoo Life that Elliot doesn’t remember having cancer, but she thinks “everything Elliot went through impacted his mental health.”
As part of his follow-up care, Elliot is assessed by a medical team every six months. Myrna says that Elliot is “starting to ask why he has to go to the doctor all the time. He’s starting to notice the differences.” Elliot also experiences anxiety, especially around doctor’s appointments. “He will cry and scream,” Myrna says. “We have to talk with him and prepare him before his appointments. As a parent, it’s hard to see your child struggle with anxiety.”
Even though Elliot is still young, he is able to express his feelings. “I don’t like it. Too much attention on me. And people always looking at me,” he tells Yahoo Life.
Myrna worries about what the impact on Elliot’s mental health will be as he grows, but she tries to focus on the positive. “It could have been worse. So we are so thankful,” she says.
What can be done to help survivors’ mental health?
Patton-Smith says that “therapy, overall awareness and early interventions are of paramount importance.”
That’s not to say that helping childhood cancer survivors cope with their mental health struggles after treatment is easy. “I wish I could say that we simply refer to a psychologist and let therapy work its magic. But it’s not that simple,” Marks says.
However, he explains that he approaches all of his childhood cancer patients as being “high risk” for developing mental health issues. “Interventions start early” and focus on “coping skills and resilience,” Marks explains. Talk therapy and medications can help, he says. Patton-Smith adds that “group therapy can be highly effective.”
There’s also greater awareness now about the importance of addressing mental health after cancer treatment. Back when she was released from treatment, Toney remembers that “we had a big binder of possible long-term effects, but there wasn’t a plan in place to address mental health or the mixed, confusing emotions I was feeling,” she says. “My family and friends did not know what I was struggling with because I did not feel like I could, or should, talk about it.”
Toney now works for the hospital where she received treatment, Children’s Hospital of Orange County (CHOC), and says that things have “changed significantly” since she underwent treatment. “Mental health services are seen as an integral part of cancer treatment,” she says. “CHOC has a survivorship clinic for patients to have their long-term treatment effects addressed, including the mental and emotional impacts,” she says.
The children’s hospital where Stern received treatment ran programs for kids who had survived cancer, which she found “invaluable.”
However, she says there’s one thing she wishes there were more of: “a community to talk about how childhood cancer has affected my life.” Stern adds: “There is a very small population that truly understands how this affects one’s life, and thankfully I made a few lifelong friends that do truly get it, but I wish there were more.”