We Still Don’t Know How to Handle Teens With Cancer

Among the many unique challenges that teens and young adults face when they get a cancer diagnosis is concern about their sexuality and body image. Already a fragile and transitory time, losing your hair, weight loss, and other side effects of teenager cancer treatments are particularly potent for these adolescents. "Society has problems dealing with sexuality to begin with, and these patients easily struggle with both their sexuality and body image," notes Dr. Damon Reed, director of the Adolescent and Young Adult Program at Moffitt Cancer Center in Tampa, Florida.

Another issue teens with cancer face is having to become more dependent on their parents, just as they were beginning to break away. "Being a teenager is hard enough," observes Mike Reing, MSPT, and co-founder of Advantage Physical Therapy in Falls Church, Virginia. "Teenagers are hardwired to try and seek independence, and then it's suddenly yanked out from underneath them. As a parent, you have to get very involved, because they are sick, but it is hard for these kids to figure out when it is safe to try and re-establish a sense of autonomy again."

On top of that, AYAs find it difficult talking to their peers about their illness, even their closest friends. During the teenage years, adolescents are often very focused on their own issues and insecurities. The empathy gene has not yet matured, and so it is almost impossible to understand what a close friend with a cancer diagnosis might be going through. If you do have a boyfriend or girlfriend when you are diagnosed with cancer, you are lucky indeed if you can maintain the relationship. “You almost always lose the girlfriend or the boyfriend, because you are getting cast as different,” Reed has observed.

In addition, having specific healthcare wards or centers that specifically address the physical and psychological needs of teens are still not all that common.  Adolescents and young adults are sometimes still treated in adult or children's wards, instead of a unit specifically for their age group.

The good news, though, is that things are changing. Reed asserts, "It's true that 20 years ago, no one was paying attention to the perils of this age group. A lot of people are, in fact studying young adults and cancer, but the information tends to not get decimated broadly."

In terms of support, Reing has seen some progress as well. He often refers his clients to Life With Cancer, an all-age cancer program in Fairfax Virginia, which offers education and resources specifically for teenagers.  Bitemecancer.org is an educational and resource website for teenagers and livestrong.org has a section devoted soley to AYAs.

Over the past several years, facilities and/or programs designed just for AYAs have been opening, including the Stanford Adolescent and Young Adult Cancer Program in Palo Alto, California, and the Teen and Young Adult Program at Memorial Sloan Kettering in New York City.

Other organizations such as bitemecancer.org offers national teen support programs, education and research for AYAs, and cancer.net has a page devoted to resources for teens, as does the National Cancer Institute. Reed observes, "these patients have an insatiable demand for knowledge, just this thirst to want more and more information on their disease. The typical [teenage] patient just wants to know that they are going to get better."

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