Adolescents and young adults face tough challenges when they hear the words “you have cancer.”
By Diana Price
Each year about 70,000 adolescents and young adults (ages 15 to 39) are diagnosed with cancer in the United States. This statistic can surprise people, says Matthew Zachary, founder of Stupid Cancer (also known as the I’m Too Young for This! Cancer Foundation, stupidcancer.com), the nation’s largest support organization for young adults affected by cancer. “Most people find it hard to grasp the concept that teens and young adults in their twenties and thirties even get cancer,” he says, adding, “The cultural consciousness of the average American is that cancer affects only old people and little kids.”
But the truth is, young people do get cancer, and when they do they need an entirely different type of support to address the unique issues—physical and psychosocial—that arise during this stage of life. “The most significant challenge for this population,” Matthew says, “is finding age-appropriate resources.” Organizations like Stupid Cancer help fill that need (see sidebar for additional resources), as do programs created specifically for adolescent and young adult (AYA) oncology patients at hospitals across the country.
We called on the directors of two of those programs—Karen M. Fasciano, PsyD, director of the young adult program at the Dana-Farber Cancer Institute, and Rebecca H. Johnson, MD, medical director of the AYA oncology program at Seattle Children’s Hospital—to shed some light on the most significant challenges that patients diagnosed with cancer as teens and young adults face.
Some types of cancer treatment can decrease fertility, and issues surrounding fertility can be a major concern for AYA patients who have not yet had children or have not completed their family. Unfortunately, patients are not always offered clear information about this impact of treatment, if they are offered information at all. “Currently, there is not a great way to predict who will become infertile as a result of their treatment,” Dr. Johnson says. “A lot of people are at risk of becoming infertile, but currently the best we can do to predict is to say, ‘You’re at low (20 percent or less), intermediate (30 to 70 percent), or high risk (80 percent or more),’ which are really pretty broad categories. And even low risk is one in five people, so this is a huge concern.”
Sometimes patients are not provided with even this general information and learn of the impact of their treatment on their fertility only later, when it’s too late for fertility preservation. “Studies have shown that [fertility preservation information] is not always offered at the time of diagnosis,” Dr. Johnson says. “Not every center has a standard practice for offering patients resources.” And even if patients are offered information, some of the preservation methods—for women, specifically—take a long time. “Time isn’t always an option for our population,” Dr. Johnson says.
In addition to the logistical and physical concerns related to fertility, AYA patients also deal with the emotional impact of issues related to fertility. “Young adulthood encompasses peak reproductive years, and creating a family and having children are normal drives for many young adults,” says Dr. Fasciano. “Actual infertility due to cancer treatment can be a huge loss for patients when they are already experiencing other losses or disappointments due to their illness and treatment.”
Young adults also often grapple with issues related to sexuality—both their concept of themselves as sexual beings and issues surrounding intimate relationships. Doctors may not always think to talk to their patients about the sexual ramifications. “Providers who are used to working with an adult oncology population may overlook the topic because they are used to patients being elderly, and providers who work with pediatric patients may overlook it because they are used to working with children,” Dr. Johnson says, adding, “It’s something that should be directly addressed with patients.”
In addition, patients often experience side effects—including hair loss, skin changes, and weight gain or loss—that alter their physical appearance in ways that make it hard for them to see themselves as sexual beings. “Young adults are concerned about sex appeal,” Dr. Johnson says, “and any feelings about physical difference are accentuated at this stage.”
Navigating intimate relationships can also be challenging. “Cancer is a challenge to any intimate relationship,” Dr. Fasciano says, but she also points out that “many young adults find that going through cancer treatment strengthens relationships.”
For those not already in a relationship at the time of diagnosis, deciding how and when to tell a new partner about a diagnosis can be difficult. Coping with this issue is made more difficult, Dr. Johnson notes, by the fact that “there are not many support resources for patients who are young and single and wanting to date.”
Finances and Insurance Issues
Young adulthood is a transitional time for many people, whether they are students, young professionals, or newly settled and starting families. It’s a time when a person’s financial life is not always secure and when insurance coverage is not a given. In fact, according to Dr. Johnson, “Pediatric and young adult patients are the most likely to be uninsured.” And, she says, even if they have insurance, managing insurance and financial issues can be hugely intimidating. Dr. Johnson is herself a cancer survivor, having been diagnosed with breast cancer in her mid-twenties. She remembers well the many hours on the phone and the maze of details she had to wade through while undergoing treatment and working. “The time it takes to navigate this aspect of the experience is overwhelming,” she says.
Dr. Fasciano adds that the financial burden that young adults face is significant and has long-term ramifications. “The cost of medical care is considerable—even with insurance; there are additional costs like transportation to the medical center, co-pays, and deductibles; and delays in education and career advancement that can result from treatment can have an ongoing impact on a person’s finances.”
Family Relationships and Friendships
Establishing independence—professionally, financially, and emotionally—is a hallmark of young adulthood. A cancer diagnosis can interfere significantly with this aspect of young adults lives, as they are often required to depend once again on family, sometimes moving back home to be cared for and giving up their own homes, peer groups, and careers. While this transition can be rocky, as parents and young adults renegotiate their relationships and learn to live together again, it can also be positive.
“Moving home is hard in that it seems a step back,” Dr. Johnson says, “but of course in most cases nobody can care for you like your parents.” In fact, she says, it is the young adults who must live on their own while undergoing treatment who elicit concern on the part of providers because “a peer group is much less likely to provide good care, versus a parent or partner who can provide more-dedicated support. Those who aren’t married or partnered are at risk of having their care fall through the cracks.”
In the face of this challenge to independence, Dr. Fasciano notes that it’s important for young adults to realize that “dependence does not negate independence. Independence is just expressed in different ways during illness.” While this can be challenging, as parents and their adult children learn to live together again, it can be a positive experience if both parties can learn to negotiate the new territory and honestly express their own needs.
Running throughout many of the issues that young adults must work through after a cancer diagnosis is the common thread of emotional upheaval. Coping with the many emotions that arise during this time, which can be magnified by side effects like fatigue and pain, Dr. Fasciano notes, can be a challenge. “Remember,” she says, “young adults are still mastering their understanding of emotions and developing emotional coping strategies and the ability to bear strong feelings.”
Support and Service
Two AYA programs provide young adult cancer patients with resources and community.
Cancer treatment centers across the country are increasingly recognizing the need for specialized services and support for adolescent and young adult (AYA) cancer patients. At Seattle Children’s Hospital, Rebecca H. Johnson, MD, medical director of the AYA oncology program, says the program she has helped develop includes a regular support group for AYA patients, a specially designed binder of educational materials for teens and young adults, and quarterly Look Good . . . Feel Better programming.
In addition, the hospital’s dedicated AYA life specialist works with other support organizations in the area to offer AYA patients opportunities for community building and education. While Dr. Johnson is happy to offer her patients these resources, she knows that there is much more work to be done to meet the needs of AYA patients. “To improve psychosocial and medical outcomes for this population, we have to continue to study the problem,” she says, “which will help us design programs that will really benefit this group.”
At the Dana-Farber Cancer Institute in Boston, Karen M. Fasciano, PsyD, directs the young adult program, which includes emotional support services, networking opportunities, educational programs, and a recently added private online community (YAP@DFCI) that provides a platform for young adult patients to connect and learn from one another throughout their journeys. Dr. Fasciano says that the online component is vital. “Young adult culture includes high utilization of Internet and social-networking resources, and a young adult program must provide some way to meet patients in this cultural setting.”
Resources for Young Adults
Stupid Cancer (I’m Too Young for This! Cancer Foundation) stupidcancer.com
Planet Cancer planetcancer.org
Fertile Hope fertilehope.org
Ulman Cancer Fund for Young Adults ulmanfund.org
Young Survival Coalition youngsurvival.org