When I was diagnosed with a brain tumor at age 24 there were no Adolescent and Young Adult (AYA) programs. I was treated at an adult hospital and participated in support groups with other cancer patients almost three times my age. You bet I felt like the odd one out. Luckily, in one of my groups I met a young man, George, just about five years older than I was. Although he had testicular cancer, that was close enough for me. We bonded and became friends for life. It was good to know someone I could relate to.
Being a young adult with cancer has its own unique challenges. Cancer was only one aspect of who I was, but it was overwhelming to think about. My friend George understood how cancer affected all the other areas of my life—how do I tell someone I’m dating? Will anyone want to be my life partner if I cannot have kids? I was employee number one of a start up company when I was diagnosed—what will happen to the company if my treatment keeps me away indefinitely? Who am I, really? How can I re-engage in my life if it might all be taken away again? “Why me?” It was hard to even ask these questions without feeling hyper-emotional.
Having cancer was hard enough, but the unbearable part was feeling I had to go through it alone because nobody else “got it.” When I was approached by Ann Morey, a volunteer with American Cancer Society, over twenty years ago to help her start a group for young adults affected by cancer, immediately I knew Ann was one of those people who “got it.” Her son, Peter, had had melanoma in his early twenties. She wanted to do something to connect “kids,” like her son and I had been, with other young people facing cancer.
Although Ann’s original idea was to have concerts for young people to raise money for cancer, I told her how isolated I felt when I was going through my cancer and still, several years out at that time, often felt lonely and disconnected. My stories resonated with her because she could imagine that her son must have felt the same way. So together we decided to create a support group instead, Healthy Young Attitude. At that time there were just a couple of national resources to support this young adult age group.
Now thanks, in large part to Teen Cancer America, AYA programs are being formed at hospitals throughout the country. According to Hilary Gan, Hospital Programs and Services Director at Teen Cancer America, “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.”*
Young people in this country deserve comprehensive specialized care, specifically designed to meet the unique needs of this age group. Every young person should have access to the appropriate protocols and clinical trials for their own diagnosis. Clear communication across the health care continuum, from pediatric through adult oncology, is a necessary part of this process. A few of the special services hospitals with comprehensive AYA programs offer include:
- Specially designed facilities geared towards older teen and young adult cancer patients (most successfully done with the support of the young people themselves)
- Psychosocial and educational support services tailored to the needs of this age group
- Fertility preservation and counseling
- Career guidance
- Support for late effects which may last years after treatment
- Peer Support, one of the most critical elements
It is crucial for teens and young adults to be treated with respect to the physical and emotional needs of their age group. AYA specific units and programs do exactly that.
*Read Hilary Gan’s April, 2015 guest blog for Digging Deep on AYA and Teen Cancer America.