Simms/Mann UCLA Center for Integrative Oncology

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Young Adults with Cancer: An Overview

Anne Coscarelli, Ph.D.

“Cancer wasn’t just a detour for me. It was a head-on collision that changed every single thing in my life…I was stuck in my parents’ spare bedroom for the foreseeable future. I had to quit my job, ask my parents for spending money, and get permission from my doctors to travel. And I certainly wasn’t dating.”*

Receiving a cancer diagnosis is rarely an expected event. It creates tremendous upheaval, fear, anxiety and concern about the future. Whether it comes early in life or late in life it is a traumatic experience that is marked by a sense of crisis and loss. There is a growing body of literature recognizing developmental life phase as an important component in understanding and planning for the needs of patients and family members. While many issues are universal, there are unique needs for patients who are young adults. Life phase cannot be ignored if we hope to treat the whole person and meet their myriad needs.

STATISTICS

The frequency of cancer in young adults begins to describe and define this population. Each year approximately 70,000 individuals are diagnosed with cancer during their 20s and 30s here in the United States. Half-a-million cancer survivors were diagnosed between the ages of 20 and 45. There are 250,000 women living with breast cancer who are under the age of 45. Cancer occurs in individuals 20 to 39 three times more often than in patients under the age of 15. These statistics underscore that there is a growing number of young adults who will experience a cancer diagnosis during their early years.

WHO ARE YOUNG ADULTS?

Defining young adults is a complex task. At the youngest end of the continuum, these patients may still be teens raising questions about who should care for them. Are they pediatric patients or should they be treated in the world of adults? These very young adults may not be comfortable in either setting in part because neither is geared toward their needs, both medically and psychologically. The other end of the continuum is harder to define. When does young adulthood end and middle age begin? Some developmental psychologists might suggest 40 while others might choose 35. More and more adults have the option of choosing to begin a family in their late 30s to mid 40s blurring this biological marker. The tasks of young adulthood may be the more important definers than a particular number and recognition that within the group of “young adults” there are sub-groups in different stages of life. They are not by any means a homogeneous group.

DELAYED DIAGNOSIS

Young adults unfortunately sometimes experience a delay in diagnosis. Cancer is not a disease that is expected in young adults. They are presumed to be healthy. Symptoms may be vague and attributed to factors such as lack of sleep, viruses and other more common young adult explanations. As a result, other options are considered long before a cancer diagnosis. Young adults also may postpone their initial visits to doctors because they are not overly concerned or they may lack health insurance. The feeling of being invincible which is a normal state for young adults can hamper their decisions to seek outside consultation or even push a hesitant physician to do a more thorough work-up. In the aftermath of a delayed diagnosis a young adult with cancer may have strong feelings of regret, guilt, sadness, loss, grief and especially anger. Family systems may also be plagued by these feelings at the time of the diagnosis as they view with hindsight the symptoms and actions not taken. These feelings are common in patients of all ages when the diagnosis is delayed. They need to be addressed by the individual as they process the impact of the diagnosis and the future.

LACK OF EXPERIENCE IN THE HEALTH CARE SETTING

Young adults with cancer often feel powerless in the health care environment. Many have never had substantial contact with a large medical team, multiple doctors from different specialties, hospitalizations, procedures, and scans. Lack of experience with the medical environment may occur at any age, but the young are more likely to be health care naïve. They may never have had to use their health benefits and some may not have them at all. Dealing with authorization, second opinions and the bureaucracy of the health care system is overwhelming. Assistance from older adults in one’s life may be especially helpful at this time. Social workers can provide needed information regarding navigating the system and introducing patients to their options. Seek information, ask for help, and don’t give up. In addition, think about the tools that may be available.

A key tool is organizing information. Many patients develop a system to organize their records and track information that they receive. Carrying a notepad to all appointments and recording key information including the date and the name of the person and how to reach them for follow-up information is essential. Tape recording consultations with physicians can allow you to review information at a later time by yourself or with others. Taking someone to appointments is another way to help remember what was said and to have someone available to help process information. Making lists of questions in advance of meetings can also help make certain that time is utilized effectively and answers are obtained.

THE PSYCHOLOGICAL CRISIS

It is well documented that a cancer diagnosis is a psychological crisis. It is a time that is marked by anxiety, fear, worry, sadness, loss, depression and anger to name a few of the most commonly expressed emotions. A growing body of literature suggests that psychological distress is more pronounced in young adults, who tend to be more anxious, have more body image related concerns and experience heightened levels of fear related to recurrence. Young adults who go into remission may experience more distress in the aftermath of the initial diagnosis and treatment, which affects their ability to resume their previous level of activity.

For many patients, social support mitigates some of the distress caused by cancer. Having close friends and family to provide comfort, support and help often assists patients through this time. However, for young adults the primary resource, family and friends, may be a double-edged sword. Developmental life phase and the needs brought by the cancer diagnosis may intersect in such a way to make dealing with cancer more complicated for the young adult. Young adults are in a period in which they are defining themselves with regard to their independence from their nuclear family, building their careers and engaging in the task of intimate relationships and/or child bearing and childrearing. Further, dealing with life-threatening disease is not a natural part of their social/peer network, thus creating a huge potential for isolation. A cancer diagnosis can disrupt each of these tasks in substantial ways.

CHANGE IN PERSPECTIVE/ WORLD VIEW

Young adults who have cancer are forever changed by the experience, which may alter their worldview in both positive and negative ways. Life is often seen as more fragile with the more realistic and accurate understanding that life has a beginning and an end. For some young adults this can lead to a feeling that life is to be lived now. They may not see the benefits of saving money, delaying life choices, or postponing gratification. It can also lead to a sense of fragility that makes them more cautious and concerned about health issues and life choices. Planning for the future may become an impossible task that can lead to immobilization.

For some survivors the close brush with mortality creates a preciousness of life that normally would not come until a later phase in life. The value of each day increases and some find cancer to be a kind of gift to their perspective. This can lead to life decisions and choices that increase meaning in everyday life and the removal of parts of their lives that no longer serve them. The preciousness of life can also be a burden. The inability to live more freely without concern for the future is a loss. There is a significant loss of innocence. As an appreciation for mortality sets in, young adults with cancer may develop feelings of anger and resentment as they face real grief and the sense that life will never be quite the same. Fears that they have lost the opportunity to fulfill their life dreams can abound.

Cancer can also become a means to avoid dealing with difficulties that pre-existed the cancer. Relationship problems, financial concerns, job choices all can be postponed during a cancer diagnosis. When the task is moving forward into survivorship, those same problems may be there. It can be hard to go back and address them. That being said, for some young adult survivors cancer can be the catalyst to take on these issues and bring them to resolution.

The change in worldview can have very different implications for the individual and most young adults will benefit from opportunities to talk about these experiences. Both counseling from an individual therapist and group support with other survivors can be especially helpful in this process.

PEER RELATIONSHIPS

One of the great difficulties that comes with changes in perspective is that peers may fail to understand the young adult with cancer. Part of what binds peers together is their shared view of the world and similar life tasks. After a cancer diagnosis, young adults often feel that they are set outside the box of their peers. This can come from changes in their perspective and the feeling that their peers really cannot appreciate or understand what they have and continue to experience.

Many young adults who survive a cancer diagnosis feel a pressure to return to “normal” as soon as possible. This idea negates their experience and how it has changed them. Some young adult survivors report a pressure from their peers to move on and forget about what has happened to them. Focusing on the future rather than allowing the young adult survivor to process how life has changed can be an alienating experience. The peer group may need the survivor to move on so that they can avoid having to face their own issues of mortality and concerns about death. For young adult survivors, there is often a new “normal” that may vary considerably from their prior view.

Young adults with cancer can attempt to raise these concerns with their peer group. While some may be sensitive and understanding, others may not be able to grapple with these issues. Seeking support from others who have experienced a cancer diagnosis at a young age can help as an intermediary step.

AUTONOMY AND DEPENDENCE

A young adult who is in the process of or has recently separated from parents may suddenly need a caregiver when treatment begins. Parents are often the ones who are in the best position to provide the shelter and nurturing especially if the young adult does not have a life partner. Many young adults who had lived on their own and established themselves as independent adults are placed in a dependent position. The need to give up their own housing and move in with parents may be driven by financial concerns as well as the immediate concern for caretaking as the young adult enters the rigors of treatment. This disruption in autonomy creates conflict for young adults who often feel that they are moving backwards in time. Having achieved their sought-after independence they may be required to surrender it. At the very least independence is challenged. It can put strains on the relationships between parents and young adult children even in the best family situations.

Parents often struggle with the fact that their young adult “child” has been diagnosed with a life-threatening illness. The diagnosis violates the assumption of the natural chronology to life in which parents age, become ill and die before children. Parents who are struggling with their own sense of loss often reach out and attempt to provide extra support and care to their young adult child. For some young adults this is welcomed, but it also can be a mixed blessing that leads to resentment of being infantilized. The dynamics of this can recreate some of the old adolescent-parent struggles in which the young adult feels angry and conflict seeking as limits are imposed. The young adult may feel a need to strive for independence and the parents may strive to nurture even beyond the needs of the young adult. These different orientations can heighten conflict at an already highly stressful time. Anger about the illness, the true cause of the confinement, may be directed at the parents, the nurturers. Parents can feel overwhelmed with feelings during these times as they feel frightened, tentative about expressing anger at someone who is ill and resentful that their good intentions are misunderstood. These issues are significant and should not be ignored.

It is extremely important for patients and families to be aware of these issues as they enter this new territory. First, it must be acknowledged that everyone is under tremendous stress. Having an awareness of the independent needs of the young adult and the needs to nurture can assist in the decision making and influence such things as how much support is really needed, the timing of it and the awareness that there can be too much. It is essential that parents and their young adult children discuss these issues with an eye toward recognizing how to preserve autonomy and at the same time meet the needs of caring for the person with cancer. Professional help from a social worker, family therapist or psychologist may be an important investment in family preservation.

The issues of autonomy go beyond emotional issues of caretaking; they also often reach the realm of financial concerns. A young adult may have to leave a job, and thus, become financially insecure and dependent on family again. Loss of income for young adults is especially hard. It can affect them with regard to their sense of themselves as productive members of society and their self-esteem. They often have not had the opportunity to develop a cushion that older adults have achieved from years of work. Young adults often lack disability compensation and sometimes are without health insurance as well. Becoming financially dependent on family can be another psychological assault and a source of great concern and worry.

Career and work issues are significant life tasks for young adults in which job promotion, accelerating commitment to work, developing identities as workers, and seeking greater rewards and status are central issues. A cancer diagnosis in this phase can set them back, make them seem less attractive in the job market, lead to being passed over for promotion and leave them with unexplained holes in their resumes. These become additional sources of stress and disrupt the young adult’s future as an autonomous individual. Young adults may want to seek counsel regarding their legal status via disability, maintaining a job and future hiring. As they move from active treatment to survivorship, career counseling may be an important intervention to assist in re-establishing their autonomy.

INTIMATE RELATIONSHIPS

A major task of young adulthood is developing the skills to establish an intimate relationship with a life partner. Young adults are heterogeneous with regard to their development in this area with some having never married, others dating, some in committed relationships living together and others legally married. Young adults in relationships face a different set of issues than young adults who are not in an established relationship.

Young adults who have established relationships at the time of the diagnosis may have a built-in support system that can help buffer them from the stressors of a cancer diagnosis. The stronger and closer that relationship, the greater likelihood that they will feel supported. However, even in the best relationships, cancer presents a significant challenge for the patient and the partner. The young adult patient with cancer may worry that the cancer has made them a less valuable partner, which can lead to withdrawal, anxiety and distress. The young adult patient often worries about the demands that the illness places on the partner and has significant concerns about how it will affect the long-term relationship. Fears of abandonment abound during these times. Young adults are often not prepared for this level of crisis early in their relationships and may not have developed the communication tools needed to work through the difficulties. Couples counseling even for a brief time can be especially helpful.

Young adults who date or are in more casual relationships must confront many unique challenges. They may become too ill to continue their pursuit of relationships and have changes in body image that affect their sense of themselves as sexual and intimate partners. Young adults who have recovered from cancer are faced with questions like, “When should I tell someone that I am a cancer survivor?” There are major concerns about abandonment and lack of understanding. The cancer experience, which changes the young adult’s worldview, also affects the ability to share a common worldview with potential partners. These are barriers to deepening relationships and achieving satisfaction with this aspect of life. It can delay the opportunity to meet partners during the actual treatment phase, but also during the physical and emotional recovery process. Peer support from others who have dealt with both life threatening illness and dating issues can be helpful. Individual counseling is another avenue to explore the anxieties and fears that inevitably surface as the young adult re-enters the “in search of partner” scene.

SEXUALITY AND FERTILITY

Sexuality, body image, and fertility can all be challenged by a cancer diagnosis. Cancer can seize any one or all of these placing the young adult at risk for loss, grief, sadness and despair. Focus on the life-saving medical plan, which occurs early in the diagnosis, may delay attention to sexuality, body image and fertility. These issues should never be ignored no matter the age of the patient, and they should be specifically addressed from both a psychological and physical perspective from the point of diagnosis into survivorship.

Addressing sexuality and reproductive health concerns may require some initiative at the time of diagnosis for the young adult. It may not be something that he or she feels comfortable discussing and the presence of parents at meetings with physicians can further complicate the freedom to discuss concerns. There are a number of resources for young adults dealing with these issues that can help. Information is the most powerful tool in this arena with the recognition that even with the best information, the outcome may not be exactly as desired.

Loss of fertility is a real problem for many patients, but there are steps that one can take to increase the likelihood of being able to have children after a cancer diagnosis. The good news is that after a cancer diagnosis, there are no data to suggest that the risk of having a child with birth defects is any different than that in the general population although waiting a period of time is often recommended. One of the most important tasks is assembling a list of questions and seeking answers from a variety of specialists. Some of the questions that a young adult patient may want to ask are listed below:

Are there any long or short-term consequences from the treatments on reproductive function?
Is infertility a possible or likely side effect of the treatment?
Are there options that can be exercised to preserve fertility before, during or after treatment? e.g., sperm banking, egg freezing, embryo freezing.
Will time spent on fertility preservation or choices lead to a poorer outcome with regard to cancer treatment?
How can I determine if I am infertile after treatment?
Will the treatment accelerate or push me into menopause? What are the consequences of this on fertility and sexuality?
If infertility is a likely or possible outcome, what options are available to me if I still want to parent children?
Will there be any consequence to me if I become pregnant after treatment?
How long should I wait after treatment is finished?
Can you refer me to a fertility preservation specialist for a consult now?
What are the costs involved in fertility preservation and will my insurance cover it? If not, will you help me talk to my insurance company?
Can you refer me to a mental health professional who is knowledgeable about these issues and can help me adjust to these changes?

Sexuality can also be seriously affected. Body image may change and young adults may be faced with scars, loss or changes in body parts and function, loss of body hair, and loss of physical conditioning. These all can affect one’s sense of desire and desirability. Fatigue from the rigors of treatment also can affect sexuality. Hormone levels may be temporarily or permanently altered depending on the type of cancer and treatment. It is important for patients to ask their physicians about what to expect even if one is not currently sexually active. Depending on the site of cancer, there may be steps that need to be taken to preserve future sexual function. If a partner does exist, it may be very important for the partner to be included in this discussion. Possible questions to address include:

How might my hormone levels be affected by these treatments?
What can I expect with regard to sensation after treatment?
Are there specific techniques/ practices that I need to know/learn to preserve my ability to engage in sexual intercourse?
What changes should I expect?
Are there decisions regarding treatment that can preserve my sexual function? What are the consequences of these decisions?
Are there choices for surgery that will preserve my body image?
Are there choices for surgery that will preserve sensation in breasts or sexual organs?
Can you refer me to someone with a specialty in sexuality to further discuss my concerns, options, choices?
Can you refer me to a mental health professional that can assist me in dealing with these changes?

It should be noted that young adults who are gay or lesbian may have some unique needs and concerns. It may be more difficult to seek information, as they may feel that their medical team is neither sensitive to their concerns nor knowledgeable. Young adults who have not shared their sexual orientation openly are at highest risk for not having their information needs met. Young adults may fear stigmatization from their medical team or alienation from their parents. Lack of awareness on the part of the medical team or fear of sharing this personal information should not stand in the way of getting answers to important questions that may affect sexuality for the rest of one’s life.

Help can be obtained through many resources. Young adults can seek out professionals who may be more knowledgeable about gay and lesbian sexuality through advocacy organizations. Clinical social workers may be able to help find support and referrals even in less open communities. Anonymity can be preserved through the use of the Internet, telephone calls to physicians or by contacting mental health professionals outside one’s local community.

CHILDREARING

Young adults who have young children at the time they are diagnosed with cancer face a multitude of concerns. They face specific challenges in their ability to provide care for their children during and after a diagnosis. Caring for young children requires a great deal of time, vigilance and energy which may be in short supply during cancer treatment. Caring for young children may place burdens on the partner who may also be trying to maintain employment to meet the financial changes. Children present their own set of issues regarding their concerns, how to communicate effectively with them, how much information to share and how to provide adequate care. Family members may be needed to assist with these demands and to provide respite care for the parents.

Other psychological issues that are faced by the young adult with children have to do with concern regarding their ability to survive long enough to see their children into adulthood. Worries about who will care for their child should something happen to them abound. These issues are even more significant for single parents. If the parent hasn’t already determined who will parent the child(ren) in the event of death, it will be important to take time to address this important concern. Young parents often feel a sense of guilt that they are not providing their children with optimal caregiving. Feelings of loss, fear of loss and anticipatory grief are all normal feelings. These feelings add to an already complicated picture of psychological distress. Getting psychological support during this time is essential. Getting help, including support from family and friends in terms of tangible resources, financial aid, childcare, domestic assistance and help with errands is also a must during the acute phase and recovery. Communication is important between partners, parents and children. Social workers and psychologists may be especially helpful to families dealing with cancer and young children. Look for help whenever possible.

PHYSICAL CHANGES LATE EFFECTS

Although these issues have arisen in various parts of this article, there are some issues that need specific attention. Young adult survivors are at risk for certain secondary difficulties referred to as late or delayed effects from the treatment that they receive for their original cancer diagnosis. As patients live longer lives, some are more likely to develop secondary cancers from the chemotherapy and radiation treatments. There may be long0 term consequences and damage beyond those noted regarding sexuality and fertility. Patients can develop respiratory and cardiac difficulties from the toxic treatments. While preservation of life from the outset is the most important initial goal, the long term consequences are important too. Patients may benefit from knowing what these might be and how they should best be followed or screened. It is also important for young adults to keep accurate records about their treatments. Secondary effects may come years later and information such as drugs, doses, amount of radiation, and fields of radiation may not be readily available. Developing a system for keeping important information for future reference is especially important. Questions that survivors may want to ask their doctors include:

What long term consequences might I expect?
What should I pay attention to and how should I be screened?
Who is the best person to screen me?
Can you write an overall summary of my treatment, names of drugs, doses, amount of radiation, and fields of radiation that I can keep as a permanent record of my cancer treatment?
Are there things I can do to reduce the likelihood of late effects? If so, what are they and what are the data to support these ideas?
Is there a specialist who will follow me for late effects?

INTERVENTIONS

There are many resources available for young adults that should be considered during a cancer diagnosis and beyond. Here is a quick list to add to the suggestions already made:

Seek Information. Utilize all of the resources at your disposal, which include the Internet, pamphlets, books, the medical team, and centers like the Ted Mann Family Resource Center.

Support Groups. Support groups are a place where you can find others who are going through similar treatments or experiences. A group for young adults is ideal, but even finding a group that has one other person facing similar life tasks can be helpful. The Internet also has support groups and chat rooms with other young adults that make access to others easier. However, proceed with a measure of caution in unsupervised environments. Not all information and help from other survivors is appropriate for you. Remember to question what you hear, consult reputable resources and discard what does not apply or does not make sense.

Mental Health Professionals. Psychologists can be great resources to talk through concerns, figure out life goals, receive support, deal with loss, reduce anxiety and cope with depression. Psychologists teach specific techniques to help manage the thoughts and worries associated with diagnosis, treatment and survivorship. Clinical social workers with a specialty in oncology are often available in medical environments and many have excellent therapeutic skills for you or your family. Social workers also tend to understand the system well and can assist in accessing resources.

Medication. Psychotropic medication can be a wonderful tool, especially when used in combination with other forms of support, information and therapy. Utilizing anti-anxiety or anti-depressant medication to get through these difficult times can be a lifesaver. Do not be afraid to consider this as an option. Medical oncologists often prescribe these medications, however, it is wise to consider getting a psychiatric consult as they are more experienced with the range of effective medications and may be able to individually tailor the plan for you.

Enlist Support System. Friends and family members are great resources. If you are not feeling up to directing them, appoint one person to be in charge of organizing help. Friends can provide food, transportation, childcare, fun, errands or a stream of regular visitors for support.

Build in Positive Activities. Just because you have cancer does not mean you have to stop everything fun in your life. Think of things that you have done throughout your life that bring pleasure. Try to build these into your life substituting less intense activities for the more strenuous ones. Rent movies, play cards or board games, have friends over and have them bring the food or whatever will distract you from all of the medical experiences.

Find Silver Linings. The saying, “There are silver linings even in the darkest clouds,” can help you to look for meaning in the experience. Individuals who find meaning in the most difficult situations tend to develop better coping and adjust to the changes and limitations. Sometimes you have to look hard to find something that is positive. It may not come to you immediately, but be open to the possibility.

Know that the Resource Center is here to assist in the journey, for patients and families.

Anne Coscarelli, Ph.D.

Wallis Annenberg Director’s Initiative in Psychosocial Oncology

For reprint authorization, contact SimmsMannCenter@mednet.ucla.edu.