This second post I’ve chosen to share is parts of a long article I participated in back in the summer 2008 issue of Women&Cancer magazine. The piece sheds light on one of the hardest things I’ve had to do in life post-cancer treatment: carve out a relevant place for me in this world where I feel like a hugely uncomfortable foreigner in every area of life. Please note that I put in blue ink the sections of the article where I’m mentioned.
“A Place of Their Own”
Years of being shuffled between pediatric and general oncology has left adolescent and young adult oncology patients without appropriate care and has stalled research into low survival rates. Finally, some passionate advocacy and innovative research is beginning to bring attention to an underserved population.
By Diana Price
If you’ve spent any time in a cancer center or oncology office waiting room lately (and chances are, if you’re reading this, you have), then you’ll know that the average age in those rooms probably hovers right around the mid-60s. That’s a nice number, if you’re checking the weather and headed out on a walk in the noon-day sun, but if you’re entering one of those rooms for the first time as a young adult who has just heard “You have cancer,” that number is probably making you feel like you just crashed the wrong party.
The fact is, receiving a diagnosis of cancer if you’re between the ages of 15 and 40 places many young adults in a category that has them feeling as though they’ve entered no-man’s land: they’re definitely too old to benefit from the brightly colored toys and the visiting clown in the pediatric wing (where some on the younger end of the spectrum are still directed for treatment), and the psychosocial issues (isolation, relationships, fertility, career choices) that they’re facing leave them feeling misunderstood by many general support services offered in the adult centers. Welcome to somewhere in between, which, encouragingly, actually has a name of its own: Adolescent and Young Adult (AYA) oncology.
In recent years, under the leadership of several key AYA clinical researchers and fueled by innovative advocacy initiatives and data compiled on the topic for the first time, the word is finally beginning to get out about AYA oncology. The recent increased attention is welcome news for young adults and for the research and advocacy communities pushing hard for progress in the face of alarmingly low survival rates and lack of understanding on the part of many healthcare providers of the unique needs and challenges faced by the population.
As encouraging as the recent surge in momentum is, young adults confronting cancer today still face a tough road: their well friends pursue relationships and careers, plan families and look to the future, while many AYAs find themselves alone, navigating life and cancer within a community that isn’t aware of their needs and can’t always offer them optimal treatment. To truly make a difference for these young adults, the advocacy and healthcare communities agree, it will take a continued, concerted effort to combine awareness initiatives and directed research that highlights the unique needs of this underserved population.
Who Are AYAs?
Practically speaking, AYAs are young women and men diagnosed with cancer between the ages of 15 and 40 who face a unique set of challenges, both physiological and psychological, as they confront a diagnosis . . . The psychosocial issues that AYAs face also distinguish them from both pediatric and older patients. The wide age range obviously allows for a variety of issues, but it is characterized for many who fall in the AYA category by similar themes as they develop social lives and intellectual goals, plan careers, face fertility and family planning decisions, and generally move through many of the defining moments of young adulthood.
What’s It Like Being an AYA?
So what does it actually feel like to face “you have cancer” as a young adult? For many, a diagnosis leads to “the feeling that you’re the only one; surrounded by people much older and younger,” says Heidi Adams. “And your well friends can’t really understand because they don’t have that same experience of illness.” That sense of isolation, Heidi says, can lead to what for many is a loss of innocence as you face mortality for the first time.
At 24, Amy Barta, knows something about coming to grips with mortality and the long-term effects of cancer. Having undergone four relapses and two bone marrow transplants, since her diagnosis with Acute Promyelocytic Leukemia, Amy has spent many years managing treatment and fending off the stares of strangers curious about the physical evidence of her illness. Much of the time, Amy says, “I felt like I did not fit in the world.” But her few interactions with other AYAs helped her see herself as part of a wider community: “I saw patients occasionally in the Cancer Clinic who were in the same boat and had fought cancer for years. We can relate in a way unlike any other because we have endured the same obstacles.” Those obstacles, in Amy’s case, did not keep her from graduating from college this past spring, nor, she says, will the remaining effects of her treatment keep her from her dream of becoming a writer and having a family. “I try to avoid reflecting on solely negative aspects of my cancer battle,” she says. Instead, when she catches a stranger staring at her bald head now, “I wave and say ‘Hi,’” she says. “I’ve learned time and again that my own attitude largely influences how people respond to me.”
The Power of Community
The positive news for survivors like Amy who find themselves facing a diagnosis today is that the increasing momentum to address the issues affecting young adults has resulted in a vocal advocacy presence and more support for survivors.
Where Do We Go From Here?
It is this sense of understanding—of the psychosocial issues, of the need for research, and of the related care and financial considerations—that in the end will make a difference. And a positive change—real progress—is what everyone involved in AYA oncology is looking for. Simply put, Dr. Bleyer says, “Young adults with cancer, who have not fared as well as younger and older patients, deserve better.”