By Rachel Odo, LCSW
Clinical Oncology Social Worker
CancerCare, Inc.
New York, New York

Clarissa Potter, LCSW
Clinical Oncology Social Worker
Manager, Quality of Care Initiative
Memorial Sloan-Kettering Cancer Center
New York, New York | October 8, 2009
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.[1] 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.

PHYSIOLOGICAL CHANGES
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 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.[11]

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]

EMOTIONAL
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 naiveté 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 ordrug use, unsafe sex, and a failure to attend to practical responsibilities.[15]

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.[16] 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,[17] 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
This heightenedpossibility 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.[18]

PRACTICAL CONCERNS
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.[22] “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.”

CONCLUSION
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,[23] 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.

Financial Disclosure: The authors have no significant financial interest or other relationship with the
manufacturers of any products or providers of any service mentioned in this article.