A Survivor’s Perspective on Young Adults With Cancer

February 12, 2009

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.

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).[1] 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.[2] 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.

Negative comments and actions (or the lack of positive support) from others resulted in feeling uninformed and unable to make critical decisions, overburdened with responsibility, like a piece of meat and just a statistic, like a textbook rather than a real person, upset, angry, and in emotional pain, alienated, lost and forgotten, and feeling the burden of having to support and reassure family members and friends. Some survivors indicated that as a result of negative communication or actions of others they felt their life just was not the same anymore.

Supportive communication that helps young survivors make sense of their cancer experience and its impact on their current and future identities and social situations not only can be helpful but also perhaps transformative, particularly for adolescents and young adults-for whom life is challenging and transformative already, without the specter of cancer looming. Attention to promoting positive communication and support and minimizing stressful communications or actions may promote the psychological healing of young survivors, as well as their successful (re)integration into society.

Cancer survivorship is a life journey initiated by the shock of being told you have cancer. It continues throughout a period of trying to adapt to life-disrupting aspects of treatment and its side effects, and ultimately transitions into one of several possible extended periods of off-treatment cancer-free survival, chronic health problems, or the end of one’s life. While all cancer patients experience stress and disruption in their relationships, body and self image, and goals and dreams, the nature and extent of that stress and disruption depend on the time in life when cancer is diagnosed. Today, research suggests that large segments of the adolescent/young adult population are not getting what they need. Young adults with cancer are still reporting going to support groups “attended by people grandma’s age,” and feeling isolated as a result. Fortunately, new and existing organizations are emerging to offer information and support and assistance relevant to young adults. These online, as well as brick-and-mortar organizations, are offering young survivors valuable basic and disease-specific cancer information, as well as information and guidance on scholarships, ways to remain engaged in physical activity, and connection to others who share a similar experience and “get it,” thereby offering opportunities to address mutual concerns, boost self image, raise confidence, improve independence and decrease feelings of social isolation, depression and anxiety (see sidebar, “Selected Resources for Young Adult Cancer Survivors”).

When I think back on what I went through, I recall painful medical procedures (bone marrow aspiration-ouch), friends who were there for me and those who were not (including those who said some really stupid things), sperm-banking (kind of fun), and hours spent at the base of a toilet seat (not fun). I remember so many mounting insurance bills and little to no understanding of what they meant or how much I owed to whom. I recall the judge who eventually ruled in my favor after several denials to receive social security disability benefits. After finally being approved to receive benefits, I asked the judge what happens to people who do not have the time or support to keep battling the system to get what they need, and he said “Those are the people who fall through the cracks.” I can recall being told of the high likelihood that I would be “cured” of Hodgkin’s disease, yet believing that I was going to be some sickly kind of guy for the rest of my life. And I recall the challenges (and costs) of unsuccessful attempts at technology-assisted reproduction and discussions with my wife Joanne about not being able to have children. (We eventually adopted and now have our wonderful 6-year-old daughter, Sierra Grace.)

I am encouraged by current advances in cancer research that contribute to a growing number of people, young and old, who are able to say ‘I had cancer AND I survived.’ Yet our care for cancer patients, survivors, and their families must move ever forward in support of their efforts to cope with potential long-term debilitating physical and psychosocial effects, and should also promote survivors’ abilities to adapt, transform, and grow, and thereby achieve as enriching a life as is humanly possible.

 

References:

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).