Adolescents and Young Adults (AYA) and Cancer: Treatment and Survivorship
About the Lecture
This panel, presentation, and Q & A considers the biology of AYA cancers, history, and research as well as distinguishing important issues that are unique to the AYA population both during treatment and through survivorship. Both medical and psychological issues, as well as support options and resources, are addressed. Both AYA’s and their families are encouraged to attend as topics such as treatment management, fertility, late effects, psychological distress, emotional support and research needs and actions are brought together by this team of experts working at the forefront of AYA and cancer.
Herbert Eradat, MD, UCLA Assistant Professor of Medicine and medical oncologist/hematologist, Jacqueline Casillas, MD, UCLA Associate Clinical Professor of Medicine, pediatric medical oncologist/hematologist and Associate Director UCLA LiveSTRONG™ Survivorship Center of Excellence, Kauser Ahmed, PhD, staff psychologist and Thomas J. Pier, LCSW, oncology social worker Simms/Mann – UCLA Center for Integrative Oncology tackle the wide range of concerns of individuals diagnosed with cancer during the age range of 15-39, also known as adolescents and young adults with cancer or AYAs.
This is a summary of a lecture presented on October 9, 2012.
Adolescents and young adults, AYA’s, are the one group of patients with cancer who have not experienced the same gains in survival rates when compared to children or older adults. Cancer occurs more frequently between the ages of 15 and 39 than under the age of 15; the number of newly diagnosed patients between the ages of 15-39 years is 70,000. Getting precise numbers is challenging at times because different analysis have used 15-39, whereas others have used 15-29. The 15-29 year age group represents about two percent of all new cancer diagnoses overall. The types of cancer that occur in the 15- 29-year-old age group is unique: e.g., 11% are male genital cancers (with 99% of these being cancer of the testes), 11% are in the endocrine system, 20% are lymphomas, 9% are female genital system cancers, 6% are central nervous system cancers and 15% are invasive skin cancers (75% of which are melanoma). The frequency of cancer types changes from 15-30 years of age, so the patterns at either end of the spectrum are very different.
Most research has focused on clinical trials for pediatric patients under the age of 21. More than 90% of all cancer patients under the age of 15 years are treated at institutions that participate in National Cancer Institute (NCI) sponsored clinical trials. The majority of patients under 15, approximately 55-65%, are enrolled in clinical trials with controlled protocols, which ensure systematic evaluations of the outcomes of treatment approaches. In contrast among patients 15-19 years of age, only 20%-35% of cancer patients are seen at such institutions.
Multiple studies assessing adult versus pediatric protocols for acute lymphoblastic leukemia (ALL) have shown that AYA patients have a higher mortality rate when treated on adult protocols compared to those treated on pediatric protocols. Pediatric protocols tend to treat patients with very intensive treatment regimens and in the hospital setting, which may be a factor in having a positive prognosis.
While cancer survival has improved by 1.5% per year for children younger than 15 and adults older than 50 years of age the cancer survival rate for the 15 to 24-year-old group has improved by less than .5% per year. Cancer survival has not improved at all in the 25 to 34-year-old group. These numbers clearly indicate that AYA’s need better organized and research-driven care!
There may be some biases that make it more difficult for young adults to be treated on pediatric clinical trials. These biases may be with the providers. The age policy has been to treat individuals over the age of 18 in a community setting rather than in a setting geared toward treating pediatric patients where there are open pediatric clinical trials. Eighty percent of young adults are treated in a community setting. Many of the cooperative group trials have age limitations that stopped at age 21 although this is now changing moving that age limit to 39. Economic factors may play a role both in terms of ability to pay and ability to be hospitalized because of the young adult’s need to work. There are also insurance-based factors that can dictate the site of care as well. In California there are options for children services that help to cover the costs of care for the under 21 population. Finally, patient preferences must be factored into this as well. The limited data on AYA clinical, health services issues and biological differences is a major problem. We do not know enough about age-specific cancers, the difference in the behavior (aggressiveness) of the cancer in AYA’s as well as differences in ability to tolerate treatment. Even when eligible for pediatric clinical trials, AYA’s are often treated by an adult oncologist in the community setting who may not have access to enrollment onto these trials.
There is an ongoing debate about who is the best provider of care for the AYA population. In some situations, the site of the cancer may help to define whether they are treated in an adult environment or a pediatric one. For example, adult oncologists are accustomed to dealing with breast and colon cancers, and thus specialists, in these areas may see mostly adults whereas pediatric oncologist may not have the expertise to treat these diseases even when they occur in pediatric patients. There are some diseases that cross over the pediatric and adult practices and these include ALL and the lymphomas. Recent research suggests that treatment outcomes of AYA’s with all types of cancer are superior when treated on a pediatric versus an adult treatment protocol. AYA’s aged 16-20 years of age (treated between 1988 and 2001) who were on a pediatric clinical trial (n=197) had an overall survival of 67% while those on the adult clinical trials (N=124) had an overall survival of 46%.
If early work suggests that a new treatment might be better than the standard treatment, doctors will carry out studies to compare the new treatment with the best available standard ones. This is called a randomized controlled clinical trial and is the only reliable way of testing a new treatment. Often several hospitals around the country take part in these trials. They use the same drugs and procedures and document the outcomes and analyze the data together. They do this so that they can accrue a large enough sample of patients to help inform them if there is a difference and to obtain the results more quickly by working together among multiple trial sites. The value of a clinical trial is that it often has the newest drugs and/or newest treatment strategy. It is important to know that having a physician suggest a clinical trial does not necessarily mean that it is a last-resort treatment option for the patient. It might be just the opposite; it might be the next best treatment option. It simply means that the physician thinks the patient and/or society potentially may benefit from the treatment being studied.
Before any trial is allowed to take place, an ethics committee must review the study protocol and approve it. They make certain that rules are followed and that protective measures are in place for patients, including making certain that the trial will accrue enough patients to meet its goals and assess the necessary information. Your doctor must have the patient’s informed consent before starting someone on a clinical trial. This means that the patient understands what the trial is about and why it is being proposed as a treatment option. A patient is supposed to know exactly what is involved and what is expected from them. Even after agreeing to take part in a trial, patients can still withdraw at any stage if they change their minds. This is always true and is always stated in the written consent form. Whether a patient decides to participate in a trial or not, the decision should not affect a doctor’s attitude toward caring for the patient.
In a randomized controlled clinical trial, some patients will receive the best standard treatment while others will receive the new treatment, which may or may not prove to be better than the standard treatment. In order to make certain that the treatments can be compared accurately, the type of treatment a patient receives is decided at random, typically by a computer, and not by the doctor treating the patient. This is because it has been shown that if a doctor chooses the treatment, or offers a choice to the patient, he or she may unintentionally bias the result of the trial. A treatment is better either because it is more effective against the disease or because it is just as effective and has fewer unpleasant side effects. Some people wonder if they will get an inactive treatment such as a sugar pill. This does not happen when there is already a standard treatment available. Researchers want to compare the new treatment to what exists.
Clinical trials are conducted in four phases. In order for a trial to progress to the next phase, it requires that researchers carefully study the results of the previous phase and determine that there is reason to move forward. The four phases are described below:
• Phase I clinical trials are the first step in testing a new treatment in humans. Phase I clinical trials are designed to study how the human body reacts to the treatment and what side effects might occur at different dosages. Because Phase I trials may carry significant patient risk, only a small group of patients participate, and only those who likely would not benefit from other treatments.
• Phase II clinical trials help researchers determine the safety and effectiveness of a treatment in patients with specific types of cancer. In other words, researchers are looking to answer this question: Does the new treatment have an anticancer effect?
• Phase III involves large numbers of participants and helps researchers decide if a new treatment is as good as, better than, or inferior to the best available standard treatment. Phase III clinical trials compare the results of people taking a new treatment with the results of people taking the best available standard treatment.
• Phase IV trials involve thousands of people in the study of potential side effects not apparent in Phase III. Phase IV clinical trials are conducted after a treatment has been approved by the Food and Drug Administration (FDA) and is being marketed.
Historically, 90% of children younger than 15 years of age with cancer are managed at institutions that participate in NCI-sponsored pediatric trials. Only 21% of adolescents 15 – 19 years of age participate in clinical trials. Estimates for 20-29 year olds is far lower. Presumably, this deprives AYA’s of access to contemporary treatment approaches and clinical expertise that could improve outcomes. Increasing enrollment of AYA’s on clinical oncology trials is critically important as a strategy for improving survival.
Barriers for AYA’s
Getting an accurate diagnosis as an AYA can often be a challenge. Cancer is not common in the AYA age group, and they often go to the doctor multiple times before the diagnosis is made. AYA’s have the highest national rate of being uninsured among all ages less than 65, thus lack of medical insurance can complicate or delay diagnosis. AYA’s may no longer be on a parent’s insurance policy, or they may not have obtained a job that offers insurance. Getting treatment when uninsured is difficult, and a patient may end up in the ER when a crisis occurs; thus, making it the location for diagnosis. In addition, AYA’s have the lowest rates of primary care use of any age group. They are often thought of as healthy, and this assumption can also create delays in seeking medical attention. Decision-making processes can be complicated, depending on the age of the AYA. Is it the AYA’s decision or the parents? How much input should each have? There are other important issues that make treatment of AYA’s more complicated. Trying to manage a complicated treatment schedule and maintain a balance in work or school can be barriers that need to be addressed. It often places a great deal of hardship, educational and financial, on AYA’s. Further there are interpersonal issues such as relationships with parents, significant others, peers, and the absence of peer support. Further AYA’s have reproductive preservation concerns.
There are important issues that AYA’s need to keep in mind. First, AYA’s who are returning to a doctor several times for the same symptoms, should push for additional testing to be done. When a diagnosis is made, review the diagnosis with the doctor or team of doctors. Ask about and review options for treatments, clinical trials, and resources for support that can be used through the cancer journey. Ask about whom to turn to when symptoms arise and what is the plan if the treating doctor is not near the AYA when something changes. Identify risks for both acute and late effects and determine what is being done to minimize these risks.
The definition of a survivor by the National Cancer Institute (NCI): “An individual is considered a survivor from the time of diagnosis, through the balance of his or her life. Family members, friends, and caregivers are also impacted by the survivorship experience and therefore included in this definition.” The number of survivors in the United States from 1971 to 2002 has been growing steadily from less than four million to more than 10 million, with about 12 million believed to exist now.
As more patients have been cured from cancer, physicians and researchers have been able to follow them long-term. The advantage of this is that they have begun to learn some lessons about the costs of the cure. One of those lessons has been about the late effects of cancer treatment. Late effects are defined as any chronic or late occurring health problem—physical or psychological or social— that persists or develops beyond the five years from the diagnosis of the cancer. Some examples that have been identified include weakening of the heart muscle from specific chemotherapy drugs or radiation, thyroid problems after radiation, and school or concentration difficulties because of radiation to the head. In 2006 the Institute of Medicine issued a survivorship report. It noted that survivorship care is a neglected phase of the cancer care trajectory. Cancer care is often not coordinated and patients often feel lost in transition. The best model of survivorship care is not yet known with regard to who should follow the patient. Some think the oncologist should follow whereas others believe that a primary care doctor can follow. The answer may be different for different types of cancer and should be discussed. It has been recommended that all survivors have a treatment summary/survivorship care plan written and in their possession. The reason for this is that cancer treatment is complex; it is often multi-modal involving chemotherapy, radiation, and surgery. As a result, it involves a multi-disciplinary team of doctors involved in the care. The treatments are often toxic with significant side effects. Further it requires coordination between doctors, between inpatient and outpatient settings and between medical and psychosocial care.
A survivorship treatment summary/survivorship care plan should include information on the disease and history, who oversaw each treatment, what treatment happened, and specific information about dosages and timing. This is needed so that late effects can be tracked and patients with a likelihood of developing certain late effects can be appropriately screened and followed. If late effects are likely from the treatments then a plan needs to be in place for future screening, including any complications related to psychosocial issues as well. Information about care coordination is also important. Sometimes these summaries are done by the primary treating physician at the end of treatment and updated if additional treatments are needed later. However, some patients do not have this, and it can feel like a difficult task to accomplish. Survivorship clinics, such as the one at UCLA LiveSTRONG™ Survivorship Center of Excellence, will do this for survivors and suggest additional care that may be needed to help to ameliorate late effects. Fitzhugh Mullan, MD was diagnosed with cancer, and began the survivorship movement and he wrote:
“Survivorship should be studied as a phenomenon in itself rather than a byproduct or afterthought of basic research on cancer treatment. As a concept, survivorship has biomedical and psychosocial components. On the biomedical side, secondary tumors, the long-term effects of treatment, reproductive health, and long-term health maintenance warrant systematic investigation. On the psychosocial side, insurance discrimination, barriers to employment, and education of youth about cancer need to be explored….This strategy promises to produce important improvements not only in the quantity of survivors but in the quality of survivorship in the future.”
This section addresses the unique psychosocial considerations for AYA’s during treatment and through survivorship. Quotes from real patients are included throughout.
Focus on Adolescents and Young Adults: As we mentioned at the beginning of the article, both pediatric and older age groups have seen cancer survival rates improve while the outlook for AYA’s has remained about the same for decades. Once it was understood that such a large population group lagged behind others in survival improvement, researchers began examining why this disparity exists. In recent years, adolescents and young adults with cancer, previously referred to as “the forgotten demographic,” have become a focus of clinical attention and research. In addition to the medical aspects of this disparity already outlined here, there are myriad psychosocial factors that also have an impact.
Health Insurance and Finances: AYA’s are a unique population because of their developmental phase of life. Many of them are growing into their adulthood and working to establish their autonomy; they often lack financial resources and may have difficulties with access to health insurance. Even those who have health insurance coverage often find themselves underinsured by state or university coverage or capped plans. Their finances may be strained by high deductibles or exclusions related to cancer coverage. Most insurance plans have age limits barring adult children from being insured through their parents’ plans at age 26. (Recent changes in health care policy are expected to bring about improvement in this area.) The Department of Health and Human Services estimates that these changes will affect 2.5 million young people, most of whom are uninsured.
• “Aging out” of insurance coverage: “So here I am, six cycles of treatment down, six cycles to go, and how am I supposed to celebrate my 26th birthday when it means I am going to get kicked off my mom’s insurance halfway through chemo?” Abby, 25, lymphoma survivor
Delaying Medical Attention and Low Adherence to Treatment: Research indicates that AYA’s have the lowest use of primary care of any age group and that they frequently delay seeking medical attention. When they do seek medical attention, their providers may mistakenly attribute their health worries to such causes as accidents or injuries. Cancer is often over-looked or under investigated. When someone in their mid-20s goes to a doctor for fatigue many doctors just assume too much work or partying, not cancer! AYA’s typically lack experience in medical settings and also likely lack experience in self-advocacy when that becomes necessary. These factors often lead to diagnosis at a later, harder-to-treat stage. Once diagnosed AYA’s often have low adherence to treatments and can be lost to follow-up when they make major transitions in their lives, move to new cities or experience other life events. College or career is too often a higher priority than their health needs.
Falling Behind: For most people, becoming an adult involves crucial milestones related to identity formation, developing intimate relationships, and starting or raising a family. AYA’s often feel “off track” with their life plans; they feel different from their peers, left behind, outpaced or forgotten. Goal setting is frequently disrupted, and the things that young people have hoped for are delayed or abandoned. Some have discussed feeling “kidnapped” or losing their sense of self in the process of treatment. Education requirements for high school, college or graduate school may be delayed due to rigorous treatment protocols or as a result of related side effects. Jobs and careers, sometimes not yet well established and therefore, lacking such benefits as flexible schedules or significant time off, may be compromised or lost altogether. There are resources available to assist working people to sustain their employment or return to the workforce.
Family: Most, if not all, young adults acknowledge that when they were diagnosed with and treated for cancer, their entire family was affected. Most often the roles of family members change and adult children are often brought back into their families of origin and returned to situations they had left or outgrown. Parents are required to provide essential instrumental help such as providing housing or transportation, financial assistance when possible, and emotional support – all at a time when young adults most often are individuating from their parents. Decision-making by young adults can draw parents back into their day-to-day lives and usually requires parental participation in medical appointments, reducing hard-won privacy and independence. Siblings, older or younger, may be called upon to assist or support in new ways. AYA’s and their families experience difficulty in maintaining appropriate, healthy relationships when the independence of early adulthood is challenged and young adults find themselves relying again, sometimes very heavily, upon family. It is important to find ways to communicate about these issues, to come to a common understanding of decisions and the values that inform decisions, and to work together to address the needs of everyone in the family system.
• Autonomy: “I went from being stoked about my new job as a personal trainer, hanging out with my girlfriend, and finally feeling like I had my own life, to living in my parents’ house again, asking them for money and for rides to the doctor, and totally missing out on the fun my friends were having. I felt like a kid again, and not in a good way.” Nick, 28, sarcoma
• Perspective: “It really gives you a different perspective on life than most of your peers have. It sounds cliché, but it gave me a lot of time to reflect on my life and what I want to do with it. You become so much more aware of what you’re capable of and how strong you are. It opened my eyes to so much more in the world. It also made me a lot closer to my family.” Forrest, 21, leukemia
Sexuality and Body Image: At a time when dating and sexuality are central to development and self-understanding, cancer diagnosis and treatments have a profound impact on AYA’s. Positive body image is challenged as a result of hair loss, new scars and other bodily changes, weight gain or loss, fatigue and other side effects. Developing a healthy sexuality and fulfilling sexual expression can be enhanced through counseling from qualified mental health professionals and by various community resources. Many young people experience a rapid advancement into a sense of adulthood, which requires learning new ways to talk about themselves safely and with maturity. Disclosure of a cancer diagnosis can be very difficult and requires careful consideration, planning, and support. Disclosure often brings with it fear of rejection and worry about loneliness and isolation. Issues of sex and sexuality may be uncomfortable or challenging for adolescents, young adults, their parents, and their providers to address directly. Still, addressing them is essential, respectful, validating and supportive for AYA’s.
• Looks aren’t everything: “My looks were kind of taken away, too. I was so self-conscious about how I looked that I didn’t even try. But that also made me realize that looks aren’t everything, and everyone is beautiful in their own way. God, I sound so cheesy.” Forrest, 21, leukemia
• Dating game: “I ended up with these scars which no one will ever see until I take my shirt off. It really throws a wrench in the dating game. When do you tell him you’ve had cancer? What do you say about the scars? What kind of reassurance can you offer that he can jump into a relationship with you? Will he run for the hills no matter what?” Karyn, 35, breast cancer
Fertility: Fertility and childrearing are essential components of the lives of many young adults. More attention has been paid in recent years to issues of fertility and cryopreservation for people with serious illnesses. Yet sometimes these needs are overlooked for younger people, those who are single, and those who are required to start a treatment quickly. Then when fertility is considered, financial constraints, time limitations, access to technology and resources and advance planning make executing a young person’s wishes difficult. AYA’s may also face delays in bearing children as a consequence of adjuvant and maintenance treatments and the real and significant uncertainties about sustained remission and risk of recurrence. Deciding when or if to start a family after cancer treatment can be a difficult process.
Importance of peer support: Adolescence and young adulthood is a time when deepening friendships and intimate relationships are imperative for healthy growth and development. AYA’s in cancer treatment are often separated from friends who are at college and risk becoming isolated from peers who are a core means of support.Time commitments for appointments and the need to travel for treatments can mean friends are not readily available. Finding ways to reduce isolation, remain connected, and build social supports is crucial to healthy coping.
Use of Technology and Social Media: Through technology, many AYA’s find connectedness, support, information and distractions from the boredom that often accompanies treatment. We encourage young people to maximize the benefits of technology while also mindful of some of the pitfalls. It may take extra time, effort, and energy to keep up. Frequently fear of vulnerability/exposure accompanies social media usage. With thoughtful consideration, technology can provide significant support and access to resources not otherwise accessible.
• Peer support: “I got diagnosed right before sophomore year, so all my friends were headed back to school and I had to come here for treatments. Luckily I found an on-line chat group of other kids going through treatment, and I used Facebook to keep in touch with everyone. I think those two things, as much as chemo, saved my life.” Elena, 20, acute lymphoblastic leukemia
Under-addressed Psychosocial Considerations
Pain and Palliative Care: Pain management education and access to palliative care are often overlooked in AYA cancer care. Assumptions about how young people can handle pain or worries about substance abuse or addiction limit conversations about these very important aspects of cancer care.
End of Life Care: Planning and decision making around end of life care are difficult topics to face at any age, but particularly for younger people. Patients, families, and providers are collaborating to battle cancer, and discussions about these issues may be postponed or neglected. Professional guidance can be crucial for facilitating difficult conversations and planning for quality of life for younger patients and their families.
Cultural/Language Considerations: Most research in the field of young adult cancer is done with white, well-educated, middle to upper-middle-class English-speaking participants. This has led to significant cultural and linguistic barriers to providing psychosocial support. There is growing appreciation for diverse cultural backgrounds and values and the importance in providing culturally competent psychosocial care, yet significant work toward reducing socioeconomic, cultural, and linguistic barriers remains.
• Cultural impact: “My parents are from Japan. They raised me as they were raised … to internalize suffering. I wanted so badly to join a support group but I worried that they would see me as weak. I eventually met a “cancer friend” and told them I was going because she asked me to go. It’s the best thing I have done for myself.” Sumiko, 35, early stage colon cancer
Lesbian, Gay, Bisexual and Transgender Populations: At this time in our culture, young Americans are finding more safety and freedom as they come to understand their sexuality and gender identities and share more openly. Even so, tremendous fear, risk, and difficulty remain for many who are in the process of coming out or identify as gay, lesbian, bisexual or transgender. Dealing with these issues while coping with a cancer diagnosis and its treatments can be very complicated. Having opportunities to connect with community resources and safe places for support is essential.
• Coming out: “If I wanted my boyfriend to be able to visit in the hospital that meant I had to tell my parents that I’m gay. I am already asking too much of them as it is to get me through this cancer. There’s no way I could lay that one on them now. But I sure miss him.” Miguel, 23, lymphoma, post stem cell transplant
Growth through the Cancer Experience: In addition to challenges addressed above, going through a cancer experience can be a time of tremendous growth. Research indicates that AYA’s who manage their cancer experience with moderate or high levels of success also find feelings of self-efficacy and mastery. These are key to future successes and to integrating the cancer into their lives as survivors. During this seeking/questioning phase of life, many find spirituality important in solidifying their beliefs and facing uncertainty and major doubts. We encourage AYA’s to seek out pastoral counselors and clergy to support them in addressing questions of fairness, meaning in life, and relationship with spirituality and faith communities.
• Spiritual growth: “Man, I have been to hell and back. I questioned God, then I raged at God, then I decided there was no God. There was so much loneliness and isolation. But now that I have had a chance to process this whole thing, to think about what it all means to me and my family, to really look at what I value about being alive, I feel like my faith has grown up with me. I know God in a different way, a way that is my own. And I feel like no matter what happens, I will always hang onto that.” Will, 23, testicular cancer
The journey of AYA Cancer Survivorship is defined by movement. Being a survivor is not a fixed state; rather it is a fluid and evolving identity. It is processed differently at different stages of the survivorship continuum and at different points in an individual’s life trajectory. And it is marked by both periods of stability and sense of mastery over the experience, and just as unexpectedly, events that propel one into a period of vulnerability and uncertainty about what is ahead.
For the purposes of this talk, we will refer to three stages of the Survivorship Trajectory—each with its own challenges. The Initial Transition to Survivorship begins with the end of treatment and the beginning of the recovery process. It is typically understood as between 0-6 months. Ongoing Survivorship, from six months to two years, is the period of learning to define the “new normal” and make the necessary adjustments to living after a cancer diagnosis. And last, Long-Term Survivorship, understood as any point after two years, is the time during which individuals come to understand the unique dimensions of their own survivorship.
Each stage presents its own psychosocial challenges for survivors, particularly those in the AYA survivor population. The Initial Transition to Survivorship is marked by the loss of the treatment structure, the schedule of treatment and the security that it provides. Often, the first fears about the uncertainty of remaining cancer fear emerge in this time, and any new symptom can trigger worries about recurrence. This can be an especially isolating time, as many people in the young cancer survivor’s support system can focus on the success of completing treatment and wanting the young survivor to put the cancer experience behind him or her. Survivors often say it is difficult to balance this perspective with their own feeling that they are not anywhere near “back to normal.” For AYA survivors, much can change in their peer groups’ lives in a short period of time—friends may have graduated or moved to start new jobs or married in the time that a young person is going through treatment. The feelings of isolation can be that much more pronounced when individuals feel out of step with the developmental trajectory of their peers.
The psychosocial challenges in Ongoing Survivorship are the challenges of defining the new normal, which now also includes regular scans, potentially worrisome test results and, in time, anniversaries of important and emotionally charged dates, such as when you were diagnosed or went through surgery. These can all trigger periods of renewed anxiety and unexpected emotional disruption. In this phase of treatment, individuals are also dealing with the ongoing late effects of treatment such as ongoing fatigue, pain, cognitive changes due to chemotherapy or changes to one’s functioning due to endocrine treatment. These changes can be frustrating as it is difficult for anyone to predict how long they will persist, and they serve as reminders that the cancer experience is not done. Perhaps the most difficult triggers in this phase of survivorship are those that come from outside one’s own experience—whether it is a news story about cancer or word of a cancer friend’s recurrence—they can take a good day and fill it unexpectedly with cancer related sadness and anxiety.
Long-Term Survivorship presents challenges for a young cancer survivor in navigating new life transitions. These include the initiation of a new job and need to maintain health insurance, beginning a promising new relationship and the questions that might present about fertility. Any new developmental milestone, including those that mark happy, promising events can introduce challenges related to being a cancer survivor. For young survivors, so many more of those milestones remain to be met as survivors and represent uncharted territory.
It is no wonder that anxiety and depression are higher among AYA survivors than in the adult survivor population, as is the incidence of suicidal ideation. Up to 25% of young adult survivors experience clinically significant systems of anxiety and depression. These symptoms of anxiety include being unable to control worries, not being able to distract oneself as needed, experiencing palpitations, shortness of breath and/or becoming preoccupied with certain rituals or behaviors as an attempt to manage worries. Symptoms of depression include feeling sad, tearful or unable to enjoy pleasurable things for two weeks or more. Other symptoms can include disruptions in sleep, appetite, low energy, feelings of guilt or worthlessness, and any thoughts of suicide. While it is normal for all survivors to grapple with complicated feelings, and to struggle with the various challenges of navigating life after cancer, it is not appropriate for anyone to feel afraid for their safety or wellbeing or feel that they are alone in these struggles. There are many avenues for finding assistance and support, and it is strongly encouraged that if a young survivor is experiencing these symptoms that they inform their medical team to begin the process of getting the needed help.
Their health care team can direct them to AYA specific support groups to help reduce feelings of isolation. Meeting with a knowledgeable therapist who understands AYA survivor issues can be helpful in processing complicated feelings and developing new coping skills. If needed, individuals may be directed to meet with a psychiatrist, as well, who can assist in treating the symptoms of depression or anxiety with appropriate medication to help someone get back on track.
Young survivors of cancer have some unique features that can complicate their course toward healthy survivorship. Young people report that they frequently coped with the many difficult experiences of a cancer diagnosis and treatment by being stoic and being perceived by family and their doctors as “a good soldier” or “trooper.” This coping strategy can be difficult to move beyond when they finish treatment and move on with their lives. Young survivors also speak of having very high standards for themselves and a need to make even more of their lives because they are aware that others did not survive their battle with cancer. These attitudes, while helpful in getting through some challenges can also make it hard for AYA survivors to express more difficult feelings or to ask for help when they might need it. Because they may not have developed other ways of coping, life after cancer can feel full of frustration and stress. Sometimes, individuals can respond with impulsiveness, anger, or risk-taking behavior.
In addition to these unique challenges, AYA survivors also gain specific strengths that can assist them throughout their lives. These include a greater life perspective than others their age and a corresponding sense of compassion for others who may be struggling. Young survivors have a demonstrated capacity for perseverance and resilience, and the ability to live with uncertainty, which is a fact of life for all humans. When young survivors can take the time to assess how being a cancer survivor has shaped them, they have the opportunity to develop better ways of coping with the ongoing challenges it presents and to make the most of the gains they have so richly earned.
We will close this discussion about AYA cancer with the words of one young cancer survivor:
“If being a cancer survivor is something I have to live with, I would rather not have it be a weight in the water that is always dragging me off course, but rather see it as an extra sail that I have to adjust to get where I am going.”