Adolescents and Young Adults with Cancer

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Types of Cancers in Young Adults

Cancer researchers, advocates, and a cancer survivor introduce the topic of adolescent and young adult (AYA) cancers. AYAs with cancers have received relatively little attention compared with children and older adults with cancer.

About 70,000 young people (ages 15-39) are diagnosed with cancer each year in the United States – accounting for about 5 percent of cancer diagnoses in the United States. This is about six times the number of cancers diagnosed in children ages 0-14.

Young adults are more likely than either younger children or older adults to be diagnosed with certain cancers, such as Hodgkin lymphoma, melanoma, testicular cancer, thyroid cancer, and sarcomas. However, the incidence of specific cancer types varies according to age. Leukemia, lymphoma, testicular cancer, and thyroid cancer are the most common cancers among 15-24-year-olds. Among 25-39-year-olds, breast cancer and melanoma are the most common.

Evidence suggests that some cancers in adolescents and young adults may have unique genetic and biological features. Researchers are working to learn more about the biology of cancers in young adults so that they can identity molecularly targeted therapies that may be effective in these cancers.

The most common cancers in adolescents and young adults (AYAs) are:

Source:  SEER 18, 2007-2011, ages 15-39

 

Cancer is the leading cause of disease-related death in the AYA population. Among AYAs, only accidents, suicide, and homicide claimed more lives than cancer in 2011. You can learn more about incidence, mortality, and survival for young adults with cancer in the Snapshot of Adolescent and Young Adult Cancers.

Finding a Doctor and Hospital

Experts in the field of adolescent and young adult (AYA) cancers and cancer survivors answer the question: What would you tell an adolescent or young adult with cancer?

Because cancer in young adults is rare, it is important to find an oncologist who specializes in treating the type of cancer you have. Research is finding that for some types of cancer, young adults may have better outcomes if treated with pediatric, rather than adult, treatment regimens.

Young adults who have a cancer that typically occurs in children and adolescents, such as brain tumors, leukemia, osteosarcoma, and Ewing sarcoma, may be treated by a pediatric oncologist. These doctors are often affiliated with a hospital that is a member of the Children’s Oncology Group . However, young adults who have cancers that are more common in adults are often treated by a medical oncologist through hospitals that are affiliated with an NCI-Designated Cancer Center or a clinical research network such as NCTN or NCORP.

Learn more about finding a doctor and how to get a second opinion in: How To Find a Doctor or Treatment Facility If You Have Cancer. A second opinion may be especially helpful when there are complicated medical decisions that need to be made, there are different treatment options to choose from, you have a rare cancer, or the first opinion on the treatment plan comes from a doctor who doesn’t specialize in or treat many young adults with the type of cancer that you have.

Treatment Choices

Anxious woman talking with her doctor

The type of treatment you receive is based on the type of cancer you have and how advanced the cancer is (its stage or grade). Factors such as your age, overall health, and personal preference are also important.

Your treatment options may include a clinical trial or standard medical care.

  • Standard medical care (also called standard of care) is treatment that experts agree is appropriate and accepted for a specific disease. The A to Z List of Cancers has information about treatment for specific types of cancer. You can also learn about treatments such as chemotherapy, immunotherapy, radiation therapy, stem cell transplants, surgery, and targeted therapies in Types of Treatment.
  • Clinical trials, also called clinical studies, are carefully controlled research studies that test new ways to treat diseases, such as cancer. Clinical trials are conducted in a series of steps, called phases. Each phase aims to answer specific medical questions. Once a new treatment has been shown to be safe and effective in clinical trials, it may become the standard of care. You can get answers to commonly asked questions about clinical trials and search for a clinical trial for the type of cancer you have. More information about young adults and clinical trials is discussed in Overcoming Age Limits in Cancer Clinical Trials and Clinical Trials Offer a Path to Better Care for AYAs with Cancer.
Treatment decisions often come with questions and concerns, especially when considering participation in a clinical trial. We can help. Please contact our free, confidential Cancer Information Service (CIS) at 1-800-4-CANCER (1-800-422-6237) for information and for help finding clinical trials.

Fertility Preservation Options

The effect of treatment on fertility is a special concern for young cancer patients. An oncologist, a patient advocate, and young adult cancer survivors discuss options for preserving fertility, current research questions, and policy concerns.

It is important to talk with your doctor about how treatment may affect your fertility. Learn about all of your fertility preservation options and see a fertility specialist before starting treatment. Research has found that although discussions of fertility preservation between doctors and young adult cancer patients are becoming more common, improvements are still needed.

Organizations such as MyOncofertility.org and LIVESTRONG Fertility also provide fertility-related support and advice to young adults and health care professionals. Fertility issues are also discussed in So Others May Benefit: Young Cancer Patients and Survivors Take Part in Oncofertility Research and Preserving Fertility While Battling Cancer.

Coping and Support

Cancer can create a sense of isolation from your friends and family, who may not understand what you are going through. As a young adult, you may feel like you are losing your independence at a time when you were just starting to gain it. Perhaps you just began college, landed a job, or started a family. A cancer diagnosis puts most people on a rollercoaster of emotions. Because cancer is relatively rare in young adults, you may encounter few patients your age. Moreover, treatment may require hospitalization far from home which can lead to emotional isolation. A desire for normalcy may keep you from sharing your cancer experience with your healthy peers, adding to a sense of isolation.

However, you are not alone. Cancer is treated by a team of experts who address not only the disease but also your emotional and psychological needs. Some hospitals offer comprehensive support programs. Support can come in many forms, including counseling, retreats sponsored by organizations that serve young adults with cancer, and support groups. This support can relieve feelings of isolation and help restore a sense of normalcy.

Young people with cancer say it’s especially helpful to connect with other young people who can offer insights based on their own experiences with cancer. Learn more about how other young people with cancer have coped in AYAs Are Not Alone: Confronting Psychosocial Challenges of Cancer.

After Treatment

For many young people, the completion of treatment is something to celebrate. However, this time may also bring new challenges. You may worry that cancer will return or struggle to get used to new routines. Some young people enter this new phase feeling stronger, whereas others are more fragile. Most young people say the transition after treatment took longer and was more challenging than they anticipated. While most of the side effects that you had during treatment will go away, long-term side effects, such as fatigue, may take time to go away. Other side effects, called late effects, may not occur until months or even years after treatment.

Although follow-up care is important for all survivors, it is especially important for young adults. These check-ups can both reassure you and help to prevent and/or treat medical and psychological problems. Some young adults receive follow-up care at the hospital where they were treated, and others see specialists at late effect clinics. Talk with your health care team to learn what follow-up care you should receive and about possible places to receive it.

Two important documents to get written copies of, and to discuss with your doctor, include:

  • A treatment summary, with detailed records about your diagnosis and the type(s) of treatment you received.
  • A survivorship care plan or follow-up care plan, which addresses both physical and psychological follow-up care that you should receive after cancer treatment. The plan is usually different for each person, depending on the type of cancer and treatment received.

Studies have found that many young adult cancer survivors are often unaware of or underestimate their risk for late effects. You can learn more in For Many Young Cancer Survivors, Late Effects Pose Lasting Problems, and Many Survivors of Adolescent and Young Adult Cancers Have Chronic Health Problems, Unhealthy Behaviors.

Get additional information about survivorship and learn about resources to help you talk with your doctor in Follow-up Care after Cancer Treatment, from the NCI Office of Cancer Survivorship.

Organizations Serving AYAs

A growing number of organizations serve the needs of AYAs with cancer. Some organizations help young people cope or connect with peers who are going through the same things. Others address topics such as fertility and survivorship. There are also radio and call-in programs that bring together young people and medical experts to share information and advice. You can also search a range of general emotional, practical, and financial support services in NCI’s list of Organizations That Offer Support Services. You are not alone.

Young Adults


Teens and Adolescents
Coping and Support
Fertility
Financial and Legal Resources
Survivorship



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