Emotional Support for Young People with Cancer
Receiving a cancer diagnosis and going through treatment can make you feel as if you’re on an emotional rollercoaster. This is especially true for young adults. You may feel shocked, afraid, angry, sad, embarrassed, and lonely as you start treatment. Over the course of your illness you, like many other young people, may also feel hopeful, determined, and optimistic. These are often referred to as the psychosocial effects of cancer treatment. Just as you talk with your treatment team about the physical side effects of cancer treatment, it’s also important to talk about how you are feeling emotionally.
Depending upon your age and cancer type you may be treated at a children’s hospital by a pediatric oncologist, or at a university hospital or medical center by a medical oncologist who treats adults with cancer. A growing number of hospitals, including many NCI-Designated Cancer Centers, offer psychosocial support programs designed for young people with cancer. These programs may include art therapy, music therapy, adventure-based programs, fertility preservation programs, and young adult support groups.
Next Steps after a Cancer Diagnosis
As a young person, you’re probably new to the health care system and haven’t yet had to make major health decisions. Use the strategies listed below to gain a sense of control as you begin treatment.
Learn about your cancer type and treatment options. Being knowledgeable about the type of cancer you have and your treatment options can help you play an active role in your care. There’s a lot of information online and not all of it is relevant to your specific cancer diagnosis or to cancer in young adults. Keep in mind that based on your age and cancer type you may be treated according to a pediatric cancer treatment protocol or an adult cancer treatment protocol.
Many young people like to read everything they can about their cancer type and treatment options, whereas others prefer to get information directly from their doctor. It may help to think about the type of information-seeker and learner you are and to share your preferences with your doctor.
Advocate for yourself. You will find your voice on this journey as you learn how to articulate what is important to you. Speaking up about things that are important to you will enable you to get your needs met. While it may be challenging, especially in the beginning, advocating for yourself will help you to feel more in charge. You may want to ask your treatment team to recommend mobile apps to help you track key information such as appointments, medications, and side effects. There are also apps to help you manage pain and stay fit.
Ask questions. Think of the people on your treatment team as professors and coaches—knowledgeable and supportive experts who are giving you the best possible care and advice. To get the most from these experts, jot down your questions ahead of time and list your concerns in order of importance. During your appointment, repeat back key information and ask clarifying questions to make sure you’ve understood the information. As a young person you may have questions about preserving your fertility and coping with fatigue and hair loss. Here are tips to manage these and other cancer treatment side effects. You may want to ask your social worker or nurse about strategies to balance the demands of cancer treatment with attending school, working, and/or caring for young children.
Support for Young People during Cancer Treatment
Changes to your social life can be challenging. Here are ways to get the support you need during treatment:
Keep relationships strong. When you’re used to sharing your adventures and accomplishments with your friends, a cancer diagnosis, and the rigors of treatment, can put you at a loss as to what to share and how to stay connected. Relationships may feel awkward and strained. Friends may be silent because they don’t know what to say or what you need. It can sometimes feel like your life is moving backwards, especially if you’ve taken a break from college, quit a job, or moved home to receive treatment. Although you may put up a brave front to protect family and friends, being open about what you are going through is a good place to start with people you are close to.
Friends usually want to help but might not know how to reach out. You may need to take the first step. Think about what you feel comfortable sharing with, and asking for, from people, keeping in mind that your needs will probably change over the course of treatment. Sites such as CaringBridge, My Cancer Circle, MyLifeLine, or Lotsa Helping Hands can help you manage the challenge of sharing updates and asking for support.
Keep finding things that bring you joy. When life is filled with change and uncertainty, it can help to think about the people and activities that are most important to you. Reflecting on what’s most important can help you figure out ways to bring these into your new normal. Doing so can help you stay grounded. Over time, you, like many other young people with cancer, may also choose to explore new interests and develop new skills.
Journal your journey. Research has found that journaling can lower stress. Start small, a few minutes a day, and build up from there. There are different journaling strategies. Some people write down many thoughts and experiences. Others jot down a single thought or list a few things they are grateful for each day. Young cancer survivors have written blogs such as the Life Interrupted series and started organizations such as Lacuna Loft that offer creative writing workshops. Many hospitals also offer journaling programs.
Reach out to young adult advocates and patients. You may choose to connect with other young people who have been diagnosed with cancer and can relate to your experiences. Many organizations listed in the young adult cancer resources section were started by young adult cancer survivors. Books written by young adults with cancer, such as Planet Cancer and Everything Changes: The Insider's Guide to Cancer in Your 20s and 30s may also be helpful. There’s also an annual conference called CancerCon that connects young people who have been affected by cancer.
Consider physical activities. Staying physically active during treatment may help you feel better. Exercising can strengthen muscles that may otherwise become weak during treatment. It can also help to prevent fatigue and lift your spirits. What you’ll be able to do physically will vary over the course of treatment—ranging from movement exercises to strenuous workouts.
Meeting with a physical therapist can help you to choose exercises that are best for you. At times when it’s all you can do to manage your daily routine you’ll want to get advice from an occupational therapist. And when you’re up for it, you may want to look at the outdoor therapy programs listed in the young adult cancer resources section.
Making a Mental Health Care Plan to Navigate Your Cancer Journey
It is as important to take care of your mental health as it is your physical health. Your emotional well-being will shift as you go through treatment. It’s common to experience periods of anxiety and difficulty adjusting, as well as hope and optimism. Here are suggestions that can help:
Acknowledge your emotions. Although it’s normal to feel down at times, signs of depression are more serious and often include no longer enjoying your favorite activities, changes to sleeping habits, feeling worthless, and/or having thoughts about suicide. If you have these feelings every day for several weeks, they may be signs of depression. Learn more about adjusting to cancer, including feelings of anxiety and distress. The National Suicide Prevention Lifeline also has information that may help you or someone you know.
Meet with a mental health expert. Talking with friends and family may help. However, fears related to treatment, coping with distress, and issues with relationships can be difficult to talk about. Mental health experts, who specialize in caring for young people, can counsel you, as well as provide strategies and relaxation techniques that are tailored to you. These experts may include people such as psychologists, social workers, mental health counselors, and psychiatrists.
Ask about age-specific support groups and programs. While most hospitals offer cancer support groups, a growing number of hospitals also have teen- and young adult-specific groups and programs. Online and in-person coping and support programs are offered by groups listed in NCI’s young adult cancer resources section.
Consider mind-body practices to relax. Integrative medicine practices such as biofeedback, breathing exercises, guided imagery, hypnosis, meditation, and yoga are often of special interest to young people with cancer. You can learn about these and other integrative medicine practices on this A to Z list of health topics from the NIH’s National Center for Complementary and Integrative Health.
Rely on your faith or belief system. Focusing on your spiritual journey can help you to deal with hard times. Coping with hair loss, hospital stays, amputation, scars, and weight changes are particularly difficult issues that some young people with cancer experience. While not everyone identifies with a specific faith, some young people find that praying, meditating, and/or talking with a spiritual leader is helpful. Learn more about spirituality in cancer care.
Advancing Psychosocial Support for Young People with Cancer
Collaboration between young people with cancer and the people on their treatment team can help to design programs that are relevant to the needs of young people with cancer. You and your treatment team may learn more about working together in this article that discusses how adolescents and young adults with cancer collaborated and served as advisors for young adult programs.
There are a growing number of coping and support clinical trials for young people listed in the NCI Clinical Trials database and the NIH Clinical Trials database such as the Promoting Resilience in Stress Management (PRISM) Intervention. This PRISM clinical trial is working to reduce anxiety and depression in adolescents and young adults with cancer who are undergoing a stem cell transplant.