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AYA Cancer – What You Need to Know!

Adolescent & Young Adult Cancer

Each year in the United States, approximately 82,000 newly diagnosed adolescent and young adults (AYAs) delay their dreams while enduring debilitating treatment for cancer in a healthcare environment that does not adequately address their unique and difficult challenges. Treatment for AYAs is usually more aggressive than that of their adult counterparts — with debilitating, and often long-term, side effects.

With average treatment lasting two years, over 160,000 promising lives are put on hold each year. In addition to newly diagnosed AYAs, many childhood cancer survivors become teens with either secondary cancers or debilitating late effects of their earlier treatment — adding thousands more to our population base.

Today, the risk of being diagnosed with cancer for AYAs age 15-40 is 1 in 56 (as compared to 1 in 71 in 1975). For females, that increases to 1 in 47, and 1 in 43 for non-Hispanic white females (source, Archie Bleyer).

Cancer is the most common cause of non-accidental death for AYAs. Unlike many adult cancers, only a very small proportion of AYA cancers are caused by known environmental or inherited factors.

Not yet fully matured adults and no longer children, teens and young adults are often caught in a healthcare void – somewhere between the juvenile décor of a pediatric hospital and the quiet, harsh reality of an adult clinic. They fit neatly into neither.

13thirty Cancer Connect is dedicated to bridging this gap in service.

Need

Over the years, childhood cancer has received much needed attention with regard to treatment and cure, but three times more people are diagnosed with cancer within the second 15 years of life than in the first 15 years. Their needs have been overlooked.

Research and age appropriate services for this population have lagged miserably leading to poor clinical outcomes and diminished quality of life for teens with cancer.

Because our healthcare systems have traditionally focused on either pediatric or adult medicine, teens and young adults are caught in a difficult void without the advantage of cutting-edge research gains or age-appropriate resources and support.

Psycho-Social Challenges

Adolescence is a difficult transition with its physical, social, emotional, and cognitive changes.  With more developed abstract reasoning, teens think deeply about issues like fairness, justice, and individual rights, often leading to rejection of parental controls, challenge of societal norms, and a strong need to be “an individual.” Still young, however, teens need to “fit in”, to be part of a peer group that shares similar values and social behaviors.

For healthy teens, this transition is difficult. Cancer presents unique psychological, emotional, and social challenges for teens intensified by the sense of isolation experienced by most.

Teens are often abandoned by their peers who don’t know how to cope. Long absences from school and lack of social activity compound the difficulties.

Limited opportunities exist for teen patients to form new peer relationships as much of their treatment is often provided at outpatient facilities.
Teens with cancer suffer from poor self-image due to disfiguring treatment, decreased self-confidence at a time of emerging independence and autonomy, and diminished hope for a productive and positive future.

Young adults face many of the same challenges as teens but must deal with others like career and employment issues, infertility, and relationship problems.

Most conventional support services do not adequately meet an AYA’s psychosocial needs. When treated by pediatric clinicians, discussion about treatment and prognosis is often directed to parents rather than the teen, disempowering the teen from being actively involved. For young adults, most support groups are comprised of much older adults who have their own difficult, but very different, challenges. Difficult issues such as sexuality and end of life are often not broached for fear of burdening the AYA patient or because of the clinician’s discomfort. When treated by adult practitioners, AYAs often do not receive the nurturing and support they desperately need and may be used to if treatment began in the pediatric setting.

Family Challenges

Families of teens and young adults are also challenged. Open communication, trust, and respect are difficult at best for parents. When cancer colors the picture, these challenges are magnified.  Navigating healthcare systems and assimilating medical information while trying to care for their teenager is overwhelming. A parent’s stress has direct impact on teens who often try to protect their parents from additional pain. Siblings also struggle, having no supportive outlet for myriad emotions. Consequently, opportunities for shared experience and cherished time are often missed for families and teens alike.

Medical Outcomes

The clinical picture for AYAs with cancer is no brighter than the psychosocial one. In the last two decades, efforts to cure childhood cancer have reaped significant progress. Thankfully, many common childhood cancers now have survival rates of 75% – 80%. The same improvement in survival has been realized for many adult cancers.

Unfortunately, the same is not true for adolescents and young adults. Striking data show that mortality from cancer peaks between the ages of 15 and 25 with many adolescent cancers having survival rates of only 50% or less. Survival rates for this age segment have shown less improvement since 1975 as compared to other age groups.

AYAs also face an increased risk of secondary cancers and serious health issues as a result of their treatment. Why are AYAs at such high risk?

Studies suggest that teens and young adults are often diagnosed late, after the disease has advanced. A sense of invincibility often keeps teens from reporting abnormal pain or body change and parents, who are no longer checking their children’s bodies, do not see changes.

Pediatric professionals, unaware or untrained about early cancer signs in teens, may incorrectly diagnose and consequently mistreat potentially serious symptoms. Another hypothesized reason for the lack of improvement is lack of participation in clinical trials. Since Nixon declared the war on cancer in 1970, research efforts have focused on childhood cancer and those of older adults. AYAs have been dramatically under-represented.

It goes without saying that human life cannot be equated to business profits or return on capital investments. However, the debilitation or death of thousands of bright, talented, and motivated teens and young adults in whom our communities have made significant emotional, educational, and financial investment represents a staggering loss of potential societal contribution.

We must find a way to stir the collective consciousness of all who are in the position to make a difference.