TeenCancerAmericaLogoResearch shows that cancer survivorship for teens and young adults has not improved in over thirty years, while major improvements have been made in both pediatric and adult cancers. Even though teens are more likely to better tolerate serious treatment than the other age groups, the actual outcomes do not reflect success. Teen Cancer America (TCA) asked why—and is working towards improving outcomes for teens and young adults, based on their hypothesis.

Kids can’t wait to be teens, and teens can’t wait to be young adults—they long for independence from their parents, anticipate the drama of high school, and the ultimate freedom of college and working.  These years are a time for young people to discover who they are and who they want to become. Peer relationships are of the utmost importance and a sense of belonging is key. While change is inevitable and often scary, these years are filled with wonderful self-discovery: unparalleled creativity, unique talents, first loves, potential careers, and in some cases, a blossoming family.

Imagine now the shock of a cancer diagnosis in the midst of all the typical developmental, social and emotional changes a teen is already experiencing.  One minute life revolves around friends, music, clothes, sports, video games, school and plans for the future; the next minute all of that comes to an abrupt halt with an unimaginable diagnosis and treatment that assaults their entire body. They find themselves in a hospital with no peers, feeling isolated, scared, and wondering if there actually is a future for them.  At this point hair loss, nausea, fluctuations in weight, and sheer survival are, sadly, their chief preoccupations.

Questions start spinning:  “What lies ahead? How will this impact my future relationships? Will treatment change my looks? What about surgery — will anyone marry me if I’m missing a leg? They say my treatment might make me infertile and I may not ever have children—yet they treat me like a child in this hospital!”  This scenario is the heartbreaking, overwhelming reality for many teens with cancer.

Teen Cancer America recognizes that teens and young adults fall into a sort of “no man’s land” when it comes to treatment–they aren’t really children, but shouldn’t be classified as adults either.  Indeed, hospital staff is accustomed to toddlers in pediatric wards or seniors in adult centers, but a seventeen year old presents a different challenge all together, and has completely different psychosocial needs than children or adults.  Issues include poor self-image, temporary or permanent physical changes due to treatment, loss of peer group and acceptance, unwanted dependence, social isolation, depression and loss of hope due to an influx of unknowns.

“Here in the U.S., when a young person up to the age of eighteen (in some places twenty-one) is diagnosed with cancer, they are likely to be treated in a pediatric hospital along side young children. Walls are often decorated in bright primary colors and visits from costumed superheroes aren’t uncommon.  After turning eighteen, the same teen would end up in an adult hospital among much older people, again feeling out of place,” explains Simon Davies, Executive Director of Teen Cancer America.

Following in the footsteps of the highly developed and successful Teenage Cancer Trust – Teen and Young Adult Cancer Program out of the United Kingdom, Teen Cancer America is designed to help hospitals and healthcare professionals bridge the gap between pediatric and adult oncology care.

With the knowledge that peer relationships and a sense of belonging is vital, Teen Cancer America aims to educate and support hospitals and outpatient facilities in the development of specialized units for this age group.  The units are a place just for teens and young adults where the cancer experience is understood, patients can relate to one another, and the importance of living life fully through the cancer journey is nourished.

Teen Cancer America’s work supports the coming together of physicians and allied healthcare professionals in both pediatric and adult oncology so that the teen and young adult cancer patient care fills the medical and psychosocial needs of this unique age group.  The organization aims to educate and support hospitals and outpatient facilities in the development of specialized units for teens and young adults.

Teen Cancer hopes to light a fire in America’s health systems, so that teens are treated like the young adults they are, with their own set of physical and emotional needs. We believe this is an essential step for teen cancer survival rates to improve and match the better rates seen in children and adults.

About Teen Cancer America

Teen Cancer America partners with hospitals to provide strategic guidance in the establishment of specialist units and services for teen and young adult cancer patients. Teen Cancer America’s vision is to ignite a movement that changes the way teens and young adults with cancer between the ages of 13 and 25 are treated and supported in America. Our mission is to improve the quality of life and outcomes for teens and young adults with cancer, support those affected by their cancer, and facilitate access to the best possible age appropriate care and support. For more information go to www.teencanceramerica.org

Hilary Gan
Hilary Gan, Hospital Programs and Services Director, is a certified Child Life Specialist with a Bachelors Degree in Child Development and a Master of Arts in Psychology. Following her work at Mattel Children’s Hospital UCLA for the past 20 years, Hilary was an integral part of UCLA’s team helping to establish the UCLA Daltrey Townshend Teen and Young Adult Cancer Program. She lead the very active UCLA Teen and Young Adult Advisory Board and has focused on building UCLA’s TYA community and program expansion.
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