When my doctor told me that I would have to put my life on hold at age 25 because tests confirmed that I had Hodgkin’s disease—cancer!—my life changed totally. I had to quit my job, move back in with my parents, and wonder about the quantity and quality of the rest of my life.
After completing therapy, I found a support group for young adults with cancer at Stanford University. I went to one of their meetings, and that night a long-time participant came back to visit the group. He was 41 years old and many years beyond treatment. Having just completed 10 arduous months of chemotherapy, I was uncertain as to what my life, and my health, were going to be like. Seeing this fit 41-year-old long-term survivor of Hodgkin’s disease gave me hope that I, too, could one day feel strong and healthy again. I attended the support group a few other times but did not attend on a regular basis. Just knowing the group was there if I needed it was a source of support for me.
As an oncology social worker, I have witnessed the variety of ways that people cope, or do not cope, with cancer. Through my own personal experience, and by observing others, I recognize that cancer has an impact on so many aspects of people’s lives—physical, emotional, social, spiritual—and that these effects can vary depending on when in life the cancer occurs. Before I was diagnosed with cancer, I was a young man living on my own and wanting to make independent (and, I hoped, responsible) decisions about how to live in the world. Cancer imposed a whole new set of challenges in my life, and to get through many of these I needed support from family members, friends, and medical professionals.
Today’s young adults diagnosed with cancer are faced with many of the same uncertainties and challenges that I confronted more than 20 years ago: feeling different from peers who do not have cancer and can go out on a Friday night without worrying about neutropenia putting them at risk of getting very sick; having sporadic and inadequate health insurance and having to make employment decisions around whether or not insurance is included as a benefit; fearing rejection when considering if, how, and when to reveal a cancer history and possible infertility to an intimate or potential life-long partner.
Now as a professor of social work I am involved in research, examining what young adult survivors want and need as they negotiate the challenges of cancer diagnosis, treatment, and life disruption. I have found that to a large extent, adolescent and young adult cancer survivors want and need emotional support and counseling for themselves and family members (but not necessarily from mental health professionals) and guidance around self-care (ie, diet and nutrition, exercise, and fitness). Many young adults want and benefit from camp and retreat programs where issues regarding health care, body image, school, relationships and sexuality, intimacy, and infertility are discussed.
Cancer care for adolescents and young adults should address these issues of concern. With Internet usage so prevalent in this population, development of age-appropriate web-based resources has great potential. Also, clinicians ought not overlook the observation that for some young adult survivors, alcohol and substance use and potential abuse is a salient issue, just as it is for many adolescents and young adults who have never had cancer.
In a recent series of focus group interviews, young adults detailed what they found to be helpful and what they found to be hurtful during their cancer treatment. In survivors’ own words, they often associated the positive comments and actions of others with useful information that helped them understand their situation and gave them an enhanced sense of control over treatment. Many survivors suggested that they were able to find the love and support that promoted their hopes and dreams and contributed to feeling normal and cared for. Positive communications and support, they said, often relieved their feelings of anxiety and isolation; helped to put life in perspective; offered hope and inspiration; enhanced their ability to make important decisions about treatment; alleviated pain and suffering, improved their quality of life; and contributed to their feelings of self-worth, feeling normal, and being able to look back and laugh.
1. Zebrack B: Information and service needs for young adult cancer survivors. Supportive Care in Cancer, In Press.
2. Zebrack B, Chesler A: To Foster Healing Among Young Adult Cancer Survivors: What helps? What hurts? (unpublished manuscript).