For young adult survivors, coming to terms with a life-threatening illness is a unique dilemma.
ABSTRACT: Young cancer survivors are often unprepared to face the complexities of adjusting to post-treatment life. They may be pleased that treatment is ending but worried about losing the support, security, and scrutiny provided by their healthcare team. Uncertainty about the prognosis for long-term, cancer-free survival often threatens their sense of control, emotional well-being, functional adjustment, and comfort with future planning. Many feel isolated, mistrust their bodies, and must adjust to an altered self-image as well as changes in relationships and sexual functioning. It can be daunting to deal with physical late effects, challenges to daily living, and employment and insurance issues. Using direct quotations from young cancer survivors, this article shares their special perspective and provides guidance as to their informational, practical, and psychosocial needs.
For young adult survivors, coming to terms with a life-threatening illness is a unique dilemma. They face the developmental tasks of youth with a challenged world view and a compromised physiology; completion of treatment does not mean the end of cancer. They may have difficulty returning to school, work, or other activities and are often forced into greater dependency on their family of origin, during a period when separation is a major life-cycle task. The transition from life as a patient undergoing treatment for cancer to a more independent role in close relationships and the world at large can be particularly challenging. Social relationships may not withstand the stigma of cancer, and the potential for recurrence of cancer can be anxiety-provoking even with a good prognosis.
Young adults (15–39 years of age) are eight times more likely than children under the age of 15 years to be diagnosed with cancer. Each year in the US, an estimated 70,000 young adults are diagnosed with cancer, and about 1 million young adult survivors are already grappling with issues related to the aftermath of the disease and its treatment. Unfortunately, these survivors often lack access to networking and professionally led services geared towards the post-treatment period. This article will discuss issues relevant to young adult survivors. Personal statements quoted here come from young adults who participated in support services at an academic cancer center. All identifying information has been changed to maintain confidentiality.
IMPACT OF SURVIVORSHIP
Survivors often describe themselves as “rubber bands,” stretched increasingly taut through the treatment period and sometimes beyond. After treatment ends, the band may “snap” and the emotional impact of the cancer experience can catch up with them. This is the point at which many survivors begin to process the totality of their cancer experience; the physiological, emotional, and practical impact.
Most cancer survivors experience physical changes and challenges that are direct results of cancer and treatment. Adapting to short and long-term consequences of treatment often takes longer than anticipated. Common concerns include fatigue, physical losses, scarring, cognitive changes, sexuality, fertility, and sudden-onset menopause.[2–4] All of these issues have a significant impact on young adults and are best summarized in the phrase “loss of healthy self.”
Survivors often experience physical changes as concrete reminders of the impact and ongoing meaning of cancer in their lives: “How do I begin to explain the deformities? I have an access for dialysis which is very noticeable. I can see it, feel the blood gushing constantly, and I can hear it. It's a constant reminder, like the scars, of everything that I've been through.” The process of physical recovery after treatment is affected by the process of emotional recovery and vice versa: “I'm 24. I'm tired of being weak, in pain, a cripple.”
Some of the changes will be visible, forcing survivors to develop new systems for negotiating social contact as they determine how best to address the inevitable stares, questions, and comments. Even when changes are not visible, survivors must adapt to the reality of living with physical challenges that only they can choose to disclose. For many, this raises issues related to self-image and the need to define the line between privacy and secrecy: “The image everyone else sees is someone put together and ‘normal.' What we see is scarred, reduced in strength or stature.”
Among young adult survivors, the issue of compromised fertility can be particularly salient.[5–7] It is “invisible,” yet it can have a significant impact on both private and public aspects of identity. Young adult survivors living with cancer-related infertility must not only integrate this change into their own sense of self, but also must determine how and when to disclose this issue to friends, family, and potential partners: “I won't be able to have children. I'm not only dealing with a huge loss but [also] I'm not married, and looking for a partner is difficult enough; all this extra stuff to deal with is overwhelming.”
For young survivors who do retain their fertility, there will be other issues to confront: “We found out that I am pregnant. I want this baby. I don't want to have to give it up to take chemo if I have a recurrence. I want it so badly that I fear this is when the bad test results [indicating recurrence] will come.” The physiological aspects of survivorship weigh heavily on young survivors' ability to allow themselves to contemplate, to plan, or even to hope for their future.
Among the physical after-effects, fatigue is nearly universal and can be particularly distressing.[8–10] “When people look at me they see a young woman who should be bursting with energy. Being so weak is the hardest thing. Everyone in the group could relate.” Many young adults are not aware of fatigue as a potential consequence of treatment and may misinterpret this post-treatment symptom as a sign of failure to recover or as a recurrence: “It was reassuring to hear people talk about fatigue. I'm unnerved by how tired I still am even now, almost 2 years later.”
They may interpret this physiological symptom from a psychological standpoint as a lack of motivation or depression. Further, many hold themselves responsible for it, adding guilt and frustration to their healing process: “I don't know why I can't seem to get myself going; there must be something wrong with me.” Most are relieved to learn that fatigue is a common problem and that there are techniques for coping.
Most young survivors have not previously dealt with serious health challenges. Nor have they focused in any significant way on general health maintenance. Cancer is a crash course. They assume responsibility for managing complicated post-treatment medical care with little or no preparation, background, or experience. They find themselves facing an unexpected learning curve at a time when they need to focus on the developmental tasks of young adulthood-identity building, family separation, social networking, establishing intimate relationships, career development, and education.
Thus, the ending of treatment and/or changes in follow-up schedules can become particularly difficult transitional periods, fraught with new concerns and insecurities: “Similar to the anxiety involved in ending treatment is the anxiety involved in reducing the frequency of follow-up appointments and scans. Sometimes I don't want to go, [but] sometimes I feel as though I'm only okay when I have a report stating as much.” Many young adult survivors are unprepared, and often unwilling, to grapple with the complexity and time involved in mastering information related to the varied late-effects of treatment. As a result, they are vulnerable to poor or inconsistent follow-up care.[12,13]
Young adulthood is not a stage of life in which one normally confronts illness. Cancer disrupts the natural course of development and sets the stage for a period of emotional adjustment that will influence every aspect of life. One crucial aspect of adjustment is the reworking of previously held perceptions of normalcy to fit a scarred sense of health, integrating the cancer experience into a still-developing adult identity: “What I most hope to accomplish is to face the pain that I have endured, face the fears that I have been left with, and come to terms with my new paradigm.”
Myriad emotional issues can arise when treatment ends. Chief among them is a confrontation with uncertainty. While most young adults face the world with a feeling of invulnerability, a belief in possibilities, and an anticipation of their future, a diagnosis of cancer jeopardizes all of this: “I feel like I lost my innocence, my youth, my sense of invincibility that meant so much to me.” In the aftermath of a life-threatening illness, many young adults report that their perception of security has been altered. This heightened sense of vulnerability can lead to hypervigilance of the body, consuming fear of recurrence, and an inability to move forward or to plan for the future.[9,14] “I no longer have this naivet about myself and my body. I can't enjoy my relatively healthy state. It's like I'm waiting for the axe to fall.” Paradoxically, these feelings can lead to high risk behaviors: medical nonadherence, smoking, alcohol or drug use, unsafe sex, and a failure to attend to practical responsibilities.
Feelings of uncertainty and loss of control have far-reaching implications, including an impact on self-image. For the young adult constructing an adult identity, this untimely insecurity confuses and hinders the process of development. Cancer and its treatment often force young adults back into the family of origin and a more dependent role. This regression, both understandable and common, can be experienced as a “double-edged sword”; necessary and comforting on one level, infantilizing on another.
At no point does this become more poignant than the transition off-treatment, when patients are losing the comfort and scrutiny provided by their medical team and family members are, emotionally, moving on. The ambivalence of the transition back to “adult life” takes on a new sense of complexity and urgency: “I am constantly questioning myself. Should I work? Should I travel? Should I save for graduate school? How am I going to move out if I don't get a job?”
For many survivors it also forces a premature confrontation with the limitations of relationships and familial connections: “It has always been comforting to know that my parents were there to rescue me. Not the case during my illness and thereafter. They certainly were there and would do anything for me, but for the first time in my life, I knew that they couldn't rescue me. I alone must face [my] fear of death.”
The cancer experience is also notable for its impact on formative belief systems. Issues of race, ethnicity, class, sexual orientation, religion-culture-have a significant influence on how survivors will make sense of their illness: “I'm Japanese-American; I'm not sure how my parents would have handled a ‘woe-is-me” attitude. They wouldn't have reacted negatively, but it would have been a change from the more Japanese approach of ‘internal suffering' and swallowing bitterness.” Religion is another aspect of culture where this dynamic is often expressed. As young adults wrestle with the role that spirituality plays in their lives, cancer can deepen their commitment or threaten their faith. Often it does both.
Whether or not a survivor identifies with a religion, the post-treatment period presents an opportunity to explore spiritual and existential issues. Many young survivors find it deeply healing to consciously process the experience as they seek ways to understand it-to assign it meaning and purpose in their lives. This process of adjusting to a new sense of self can precipitate an early experience of existential “aloneness” that magnifies feelings of difference, isolation, loneliness, envy and, sometimes, contempt for healthy peers who are not confronting these issues in such a powerful way: “I listen to friends now, but I just can't relate. You just want to shake people and tell them to get a grip.”
Ultimately, survivors have a need to process and make sense of the cancer experience as a “whole”; of who they are both in spite of and because of it, to make sense of their peers and their relationships given their altered perspectives: “I feel that I am able to see things much more clearly than before. This clarity sometimes is not wanted.” They need to mourn losses and changes, to learn how to cope with uncertainty while remaining fully invested in their daily lives.
A critical aspect of this “investment” is the willingness to connect with others. Young adult survivors face the challenge of re-entering their peer group with an intimate knowledge of their vulnerability and mortality. The typically healthy young adult may not be able to relate to the experiences of those with a catastrophic illness: “My noncancer friends are well-meaning, but they don't understand and just say, ‘you look great.'” The sense of being misunderstood and unsupported or misunderstood and smothered can fuel an impulse to rethink and even terminate relationships.
These feelings, coupled with fears of rejection and loss, often challenge the ability to build new relationships. “I'm never going to find a mate. Who is going to want me with all this baggage? Who is going to deal with my insanity, my menopausal 80-year-old body?” Issues of disclosure, particularly for those who are dating, become paramount: “You never know when is too early to tell someone but the longer you wait, the more you start to wonder if you waited too long.”
Some young adult survivors will successfully maintain their pre-existing relationships and build new ones, but they too may harbor a sense of “aloneness” that even their most intimate relationships cannot pierce: “This experience with cancer is a very selfish one-I recognize that it impacts those around me-but it truly is mine and mine alone.”
Cancer sparks an “early” confrontation with personal mortality that can deepen the typical existential musings of this group: “When your mortality is brought out of the abstract and turned into a reality, it is a hard cross to bear, and even harder because you do it alone. While my husband may grieve over the possibility of losing me, I would be saying goodbye to him, our son, and to life itself.” This heightened sense of mortality can play itself out in numerous ways. For many, the process of coping with multiple emotional issues and identity shifts can lead to self-imposed pressure to make sweeping lifestyle changes.
This pressure, combined with societal expectations of the cancer survivor-the myth of the epiphany-can be a tremendous burden for young survivors: “Shouldn't I always be thankful, shouldn't it be that I never get upset by the small things and always focus on how fragile life is? I feel that I have betrayed myself because I am not acknowledging how lucky I am all the time.” While some will make major life changes, many will not and will find this pressure to be an impediment to the process of acclimation to life beyond cancer.
Just as the cancer experience has an impact on physiological and emotional aspects of development, practical matters are also affected: roles, relationships, goal-setting, education, career, finances, insurance.[19–21] Cancer and its treatments interrupt normal developmental pathways. In addition to the emotional aspects of intimate disclosure, for example, young adults may struggle with the practical aspects of public disclosure. They may be inclined to disclose that they are cancer survivors because of the prominence of the experience in their lives, but they may be justifiably concerned about the implications of telling educators, employers, and new acquaintances about their illness: “At first, you tell everyone. Then you realize your vulnerability. Then you share more wisely.”
School, work, financial development, plans, and relationships can be cut off, put on hold, or challenged in any number of ways during treatment. All of this must be addressed during the post-treatment period: “I have lost my self-discipline, my sense of achievement. Every hurdle, whether it is prejudice in hiring a cancer survivor or anything else, diminishes my hope of pursuing my dreams.” These concerns are the external defining elements of daily life that enable young adults to develop a sense of identity and purpose and to function in the world. Often, these are the issues that survivors first identify as distressing.
Ultimately, social issues at every level become salient for young adult survivors. Access to information relevant to cancer survivors' legal rights, resume writing, job hunting, disclosure, and the opportunity to connect with others who have faced the social hurdles that arise in the wake of cancer, can be an indispensable asset in the process of recovery. “We're all similar in a big way- everyone thinks we're out of the cancer world and dealing REALLY well. But, in our own minds we're not, we're still very much there. It's comforting to know that there are people who understand what it feels like to be you.”
The end of treatment can signal a complex period of recovery. For young adults, the most salient concerns that arise are as closely related to their developmental stage as to the cancer experience itself. Physical, emotional, and practical recovery can be assisted and supported through appropriate clinical services and interventions. Psychoeducational support services such as those provided by organizations like Memorial Sloan-Kettering's Post-Treatment Resource Program, CancerCare, the Lance Armstrong Foundation, I'm Too Young For This, or Planet Cancer can be critical factors in healing.
These organizations can be significant resources as young adults grapple with the process of integrating the cancer experience and seek to reduce the negative and intractable power of cancer. A sense of normalcy can be regained and the motivation to move forward can be more firmly established. The illness and its aftermath can come to be understood not as a defining aspect of the self but as just one of many aspects of a survivor's identity: “It's all part of feeling a new sense of being you. It's strange how this can simultaneously make you feel more confident and more insecure.”
Given the current national interest in cancer survivorship, and the issues unique to this population, the field is ripe for an increased focus on young adult survivorship. The intersection of post-treatment recovery and young adult development presents highly promising entities for clinicians and researchers. In spite of the losses, the sadness, the anger, and the confusion, young adult survivorship is potentially a period of significant growth, possibility, and hope.
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