After Brain Tumor Treatment in Children

During treatment for a brain tumor, most people are focused on getting through treatment and managing side effects. After treatment, the focus tends to shift toward the long-term effects of the tumor and its treatment and worries about the tumor still being present or coming back.

It’s normal to want to put the tumor and its treatment behind you and get back to a life that does not revolve around it. Getting the right follow-up care offers the best chance for recovery and long-term survival.

Follow-up care after a brain or spinal cord tumor

For several years after treatment, regular follow-up exams will be very important. Talk with the cancer care team about developing a survivorship care plan. This plan can guide your next steps after treatment.

What’s usually in a survivorship care plan

A survivorship care plan might include:

• A summary of the diagnosis, tests done, and treatment given
• A suggested schedule for follow-up exams and tests
• A schedule for other tests that might be needed in the future, such as early detection (screening) tests for other types of cancer, or tests to look for long-term health effects from the brain tumor or its treatment
• A list of possible late- or long-term side effects from treatment, including what to watch for and when to contact the doctor
• Diet and physical activity suggestions

What to expect during follow-up visits

Whether the tumor was removed completely or not, your cancer care team will want close follow up, especially in the first few months or years after treatment. They will watch any tumor or scar tissue left after treatment for signs of the tumor coming back. They will also check for short-term and long-term side effects of treatment as part of these visits.

Follow-up visits may include:

• An exam that includes checking feeling (sensation), strength, balance, walking, and reflexes
• Imaging tests such as MRI scans
• Blood tests such as blood counts, hormone levels, and kidney and liver function tests
• Hearing test (audiogram)
• Vision test (this may be done by a specialist such as an optometrist or ophthalmologist)
• Cognitive test (to test how well the brain can learn, make memories, and perform tasks)
• Ultrasound of the heart (echocardiogram)
• Cancer screening tests

If treatment caused any damage to the brain, especially to parts important for walking, talking, or moving the arms and legs, physical therapy and rehabilitation may also be an important part of recovery after treatment.

Visits with the cancer care team will be frequent at first, but the time between visits may get longer as time passes. The risk of recurrence usually goes down over time. However, for some types of brain tumors the risk of the tumor coming back can last for many years. Ask your cancer care team about the specific type of tumor, how long imaging tests to check the brain may be needed, and the risk of the tumor coming back.

Even as the risk of recurrence goes down, routine doctor visits are still important because some side effects of treatment might not show up until years later. Follow-up care gives you a chance to discuss any questions or concerns that arise during and after recovery from cancer treatment.

To learn more about the possible long-term effects of treatment, see Late Effects of Childhood Cancer Treatment.

Emotional and social health in children and families affected by brain tumors

Once treatment is finished, emotional concerns can come up. Some might occur many years after treatment and can include:

• Dealing with physical changes that can result from the treatment
• Worries about the cancer returning or new health problems developing
• Feelings of resentment for having had cancer or having had to go through treatment or having health problems when others do not
• Feeling guilty for surviving cancer, when other friends with cancer did not
• Concerns about being treated differently or discriminated against by friends, classmates, coworkers, employers, or others
• Concerns about dating, marrying, and having a family later in life

It’s normal to have some anxiety or other emotional reactions after treatment. But feeling overly worried, depressed, or angry can affect many aspects of a young person’s growth. It can get in the way of relationships, school, work, and other aspects of life. With support from family, friends, other survivors, mental health professionals, and others, many people who have survived cancer can thrive despite the challenges they have had to face.

Parents and other family members, especially siblings, can also be affected, both emotionally and in other ways. Some common family concerns include financial stresses, job loss or relationship stress during treatment, and worry about cancer returning. Social workers and other professionals at cancer centers can help families find support. Reach out to your child’s cancer center for help when needed.

To learn more about helping children with brain tumors and their loved ones cope during and after treatment, see Childhood Cancer.

Long-term follow-up guidelines

To help increase awareness of late effects and improve follow-up care for childhood and adolescent cancer survivors throughout their lives, the Children’s Oncology Group (COG) has developed long-term follow-up guidelines for survivors of childhood cancers. These guidelines are used by doctors to create a survivorship care plan specific to your child or teen and their treatment. They can help you know what to watch for, what types of screening tests should be done to look for problems, and how late effects can be treated.

To learn more, ask your doctor about the COG survivor guidelines. You can also read them on the COG website: www.survivorshipguidelines.org. The guidelines are written for health care professionals, but patient education materials on some late effects of treatment are available on the site as well (as “Health Links”).