Treating Adolescents and Young Adults (AYA) with Cancer

A cancer diagnosis in adolescence or young adulthood can bring many emotions. Knowing what to expect can help you feel more prepared as you navigate this journey.

Who treats adolescent and young adult (AYA) cancers?

Adolescents and young adults with cancer might have different types of doctors on their treatment team. This depends on the type and stage of cancer and the treatment options. These doctors can include:

• Cancer surgeons (surgical oncologists) are doctors who use surgery to treat cancer. Surgeons often specialize in treating a certain part of the body or a body system (such as the bones and muscles, the reproductive system, or the digestive system).
• Medical oncologists are doctors who use chemotherapy, targeted drugs, and other medicines to treat people with adult cancers.
• Pediatric oncologists are doctors who use medicines to treat childhood and adolescent cancers.
• Radiation oncologists are doctors who use radiation to treat cancer.
• Nurse practitioners (NPs) and physician assistants (PAs) are health professionals who are trained to practice medicine alongside doctors.
• Physical or occupational therapists are professionals that can help people with cancer maintain or regain physical function during treatment, especially after surgery or long hospital stays. 
• Social workers are professionals who can support families with emotional, financial, and other stresses and connect them with resources for assistance. 
• Dieticians or nutritionists are professionals who monitor a person’s weight and nutrition to help make sure you’re as healthy as possible during treatment. 
• Psychiatrists, psychologists, or counselors are professionals who can help people with cancer and their families cope with the stress of a cancer diagnosis and its treatment. 

Many other health professionals might be part of the cancer team as well.

What treatments are used for adolescent and young adult (AYA) cancers?

Different types of cancers need different types of treatment. The treatment plan for cancer depends on:

• The type of cancer
• If the cancer has spread
• How fast the cancer is growing
• If clinical trials are available
• Age at diagnosis
• Individual needs and preferences

Depending on the type of cancer, more than one type of treatment might be used. For example, radiation or chemotherapy might be used to shrink a tumor before surgery. Or chemotherapy might be given after surgery to kill any remaining cancer cells.

See your specific cancer type for more information on how it is treated.

How does cancer and its treatment affect young adults?

Cancer and its treatment can affect many areas of a young person's life. These might include finding the right doctor, planning for long-term health, managing finances, school, relationships, and fertility.

Finding the right doctor and treatment center

There are very few doctors who focus specifically on adolescents and young adults with cancer. The type of doctor you have or the treatment center where you get the best treatment depends on your age and the type of cancer you have.

Cancers that are more common in children, such as acute lymphocytic leukemia (ALL), bone sarcomas (osteosarcoma and Ewing sarcoma), and  rhabdomyosarcoma, are often best treated by pediatric oncologists. They have more experience with these types of cancer.

Cancers that are more commonly seen in adults, such as melanoma or thyroid cancer, might be best treated by doctors who treat older adults and see these types of cancers more often.

For some cancers (especially childhood cancers like ALL and bone sarcomas), the more aggressive treatments used for children have been found to improve outcomes for adolescents and young adults as well. But for other cancers, the results are not as clear. Again, this can depend on the person’s age and the type of cancer.

Thinking about long-term health effects of treatment

Adolescents and young adults often live for many decades after cancer treatment. Because of this, the cancer care team will consider long-term health when planning treatment whenever possible, not just how well treatment works right now. Some treatments are designed to work just as well while causing less harm to a person’s health later in life.

Short-term and long-term side effects can be prevented or lessened by staying as healthy as possible.

Learn more about long-term and late effects and how good nutrition and physical activity can help you lead a healthy life.

Paying for treatment and managing insurance

Young adults are likely to be less financially stable than older adults. Young adults are also more likely to be uninsured or to have very limited health insurance when compared to children or older adults. If this is true for you, it might be more difficult to seek medical care in the first place. Or you may wonder how you’ll afford cancer treatment, which can cost a lot.

Financial resources might be available. Talk to your care team or social worker to learn what financial help is available.

Talking with the care team

Communication between patients and their doctors can be challenging for anyone, but it can be especially so for adolescents and young adults. Many cancer doctors are more comfortable dealing with other age groups.

For some pointers on how to talk with your care team, see Communicating with Your Cancer Care Team.

Joining a clinical trial

Clinical trials are carefully controlled research studies that help doctors learn more about promising new treatments or procedures.

Clinical trials can give access to newer treatments that aren't yet widely available. Sometimes they may be the only way to get some newer treatments. They are also the best way for doctors to learn better ways to treat cancer. Still, they might not be right for everyone.

Research shows that adolescents and young adults are less likely to participate in a clinical trial than children, which makes improving treatments for these cancers difficult. Common barriers include:

• Lack of knowledge about clinical trials
• Financial concerns
• Enrollment restrictions
• Lack of clinical trials at a nearby hospital or treatment center
• Limited time

If you would like to learn more about clinical trials, start by asking your doctor if your clinic or hospital conducts clinical trials. See Clinical Trials to learn more.

Staying in school or keeping a job

Cancer and its treatment can also affect your ability to go to school or work. Doctor visits, appointments for exams and treatments, time needed to recover from treatment, and later follow-up visits can all make it hard to study or work at a time when many young people are just starting their independent lives.

How treatment may affect fertility

Some adolescent and young adult cancers and their treatments can cause changes in your body that affect the ability to have children (fertility). Talk to your cancer care team about the risk of infertility with treatment. Ask if there are options for preserving fertility, such as sperm banking or egg freezing.

Maintaining communication and friendships

Young adults can often feel isolated and out of place during cancer treatment. You may not see many people your age who are dealing with the same issues you are. Some friends and family members might not know how to talk to you after your diagnosis. This may cause relationships to grow distant.

If you or someone you know has cancer, and you’re struggling with how to maintain the relationship, these resources may help.

Managing priorities

Many adolescents and young adults struggle with the loss of independence that comes with a cancer diagnosis. They might feel that they need to put their long-term plans, such as school, career, dating, or family building on hold, which can be disorienting. A cancer diagnosis can cause a major shift in priorities which can affect a person’s mental health. Some might find it difficult to ask for help when it’s needed.

Cancer and Mental Health: How Caregivers, Friends, and Family Can Help

Coping with body changes and relationships

Cancer treatment can also affect sex drive, self-confidence, and body image. This might make dating, romantic relationships, and sex challenging. Young people with cancer can struggle with relating with other people their own age after experiencing cancer.

Other things to consider

Seeking a second opinion: If time allows, consider getting a second opinion to feel more confident about the treatment plan you choose for your child.

Clinical trials: Clinical trials study new treatments and may offer access to promising options not widely available. They are also how doctors learn better ways to treat cancer.

Integrative and alternative methods: You may hear about herbs, diets, acupuncture, massage, or other ways to relieve symptoms or treat cancer. Integrative (holistic) methods are used along with standard care, while alternative ones are used instead of standard care. Some of these may help relieve symptoms, but many aren’t proven to work and could even be harmful. Talk with the care team first to make sure anything you're considering is safe and won’t interfere with your treatment.