Surviving Childhood Cancer — Growing Up Too Fast
Having cancer is at odds with normal childhood development. The illusion of immortality is crushed and young minds must face issues most come to terms with in mature adulthood.
What does it mean to have survived cancer? Who in my life means something to me? Who do I want to be?
These are questions that children who have survived cancer may find themselves asking. While their peers are thinking about shopping and swapping video games, childhood cancer survivors are often preoccupied with the meaning of life. In some respects, they are premature adults who present a new set of challenges to social workers.
“To face the possibility of death at a young age forces childhood cancer survivors to not only deal with issues such as who they are but also whom they care about, what it means to fight, and what it means to survive. They do that before the developmental stages predict that they should. That’s what I mean by ‘making meaning,’” she explains.
In a study of Latino childhood cancer survivors, Jones found that cancer changed their lives—often for the better. “They were on a difficult path [and] a frightening cancer diagnosis caused them to stop and look at what they value, what is important. The kinds of things they thought about were the importance of their family and friends, who stands by you, what it means to be a good friend, what it means to be with someone, the value of life, appreciating the little things as well as life, and gratitude for others. They found meaning and their lives changed by facing a life-changing illness,” she explains.
Gift of Gratitude
It is not a stretch to think that gratitude may be a protective factor for childhood cancer survivors when you consider that gratitude has been linked to healthy hearts. University of Connecticut psychologist Glen Affleck, PhD, found that cardiac patients who blamed their heart attacks on others were more likely to suffer another heart attack within the next eight years. On the other hand, cardiac patients who recognized the benefits of an initial heart attack, including a greater appreciation of life, had a reduced risk for a subsequent attack.
A University of Pittsburgh study of heart transplant patients found thankfulness and appreciation were positively related to improved physical and mental health at one year posttransplant. Thankfulness was also related to greater compliance with medical regimens and fewer difficulties with diet and medications.
A manifestation of gratitude is a desire to give back. Maria Bracamonte, MSW, a pediatric oncology social worker at the University of California, San Francisco (UCSF), has found that many of the young people who participate in the Survivors Clinic at UCSF have an urge to give back. “We see a lot of patients who have developed their strengths and resilience from managing their illness. They come into our clinic, and they want to find ways to give back to other patients and families. We have had patients who wanted to be a mentor to a patient who is going through treatment or wanted to be a camp counselor at a camp for pediatric oncology patients,” she says.
Jones has seen this, too. “A lot of survivors become healthcare professionals. They decide during their cancer experience that they want to help other kids. Often, they have been very inspired by a doctor or a social worker who really cared for them, provided for them, and gave them an opportunity to grow,” she explains.
The experience of surviving childhood cancer is often at odds with normal childhood development. “Adolescence is a time of immortality, a time of growth. Adolescents are forming their identities and developing possible selves. They are trying to become the biggest, most expansive person that they can as they try on these different ways of being in the world. There is a real paradox with this developmental phase when the adolescent experiences cancer,” Jones explains. Just when the adolescent is experiencing immortality, his or her life is threatened by cancer. When it is natural to rely on peers, cancer patients have to repress that desire because they are hospitalized and forced to depend on their families.
“In many ways, they are older, having been changed by this experience,” says Jones. “They relate with adults that are much older than they are, and they understand concepts that their peers don’t. They are thinking about life differently than their peers.
“At the same time, they feel cancer cheated them from their adolescent experience. They missed the experimentation phase, whether it’s unhealthy or healthy. To be pulled out of your social network at that time is very difficult and can create some of the dilemma that occurs afterwards. They feel both younger and older than their peers, and that makes it hard for them to feel comfortable reentering a social network,” she adds.
Bracamonte hears the same thing. “Part of it depends on when the patient was diagnosed. I see patients who struggle more because they were diagnosed later in adolescence or were diagnosed when they were in college. They are getting treatment for cancer when they should be off at college or graduating from high school,” she says.
Childhood Cancer Survivors
Studies of childhood cancer survivors have found that major psychiatric disorders among them are relatively rare. More typical are adjustment difficulties, such as increased health concerns, somatic complaints, and academic problems. Marriage may also be delayed (Zeltzer, 1993).
A minority of childhood cancer survivors experience extreme symptoms of depression and psychosocial distress. Risk factors for a poor psychosocial outcome include being female, being of low socioeconomic status, and undergoing treatment with intensive chemotherapy (Von der Weid, 2008).
Back to Life
At the survivors clinic where Bracamonte works, celebration is an element of getting back to life. “We celebrate what they have gone through and what it means in their lives. Some of these patients don’t have a lot of memories of their treatment—depending on their age—but the family has been greatly impacted and has needed support over the course of their treatment. Whereas other patients remember certain things about treatment, sometimes they have a lot of fears around their cancer coming back,” she says.
Helping childhood cancer survivors return to school is another aspect of Bracamonte’s work, which can range from getting neuropsychological testing to tutoring or getting an individualized education plan in place. Specialized testing is not easily covered by insurance, and so patients often need help. It is not uncommon for childhood cancer survivors, depending on their treatment, to have issues with memory and concentration. For that reason, testing is particularly important.
The survivor who has been out of school for a long time must often deal with social issues when integrating back into the classroom. Bracamonte says it is important to explain to school administrators what the child has endured. “Sometimes these kids come back and they look perfectly normal; it is helpful for the school to understand what the child has been through in treatment and what cognitive effects they may have. The educational impact of childhood cancer depends on the type of cancer they had, the type of treatment they had, and the age of their diagnosis,” she says.
Patricia Fobair, LCSW, a recently retired social worker and a cancer survivor, was on the cancer scene in the ‘60s and has been supporting survivors all along. The magazine she developed and published at Stanford University, Surviving!, just completed a 20-year run. She advocates good nutrition, exercise, and refraining from alcohol, a difficult regimen for adolescents. “I learned it when I was a patient and had to give up wine. Alcohol is not a friend of people going through cancer. Recurrence rates are higher for people who drink,” she explains.
Fobair ran a support group for cancer survivors at the Cancer Center of Stanford University Hospital. “Everyone needs to talk about the experience. Sometimes, it is important to talk to the young people and their families separately, especially when the young person is trying to leave home and get away from Mom and Dad,” she says. Fobair has also found that sometimes parents infantilize their children. “Whatever the normal separation device was, it was severely challenged by their cancer treatment,” she says.
Support for Social Workers
Walsh recommends that social workers have strong support system to cope with such challenging emotional situations. She suggests that they seek continuing education and information to enhance their skills. Good supervision is important, as are opportunities to network with other pediatric oncology social workers about different ideas, as well as for peer support. “When I was a pediatric oncology social worker and able to find someone else that could really identify with what I did, that was the source of incredible support,” she says.
More on the Horizon
— Lynn K. Jones, DSW, is a freelance writer and an executive coach and organizational consultant in Santa Barbara, CA. As a specialist in organizational culture, she supports leaders and organizations in developing mission-driven cultures.
Zeltzer, L. K. (1993). Cancer in adolescents and young adults psychosocial aspects. Long-term survivors. Cancer, 71(10 Suppl), 3463-3468.
Association of Pediatric Oncology Social Workers (APOSW)
Initiative for Pediatric Palliative Care (IPPC)
A Lion in the House
National Coalition for Cancer Survivorship (NCCS)
Cancer Advocacy Now!
Cancer Survival Toolbox