Long-term and late effects of cancer treatment in children and teens

Treatment for childhood blood cancer may consist of chemotherapy and other drug therapies and may also include radiation therapy or allogeneic stem cell transplantation. There are risks for long-term and late effects common to all of these treatments, and these may include problems with learning, fatigue, bone or joint pain, and an increased risk for developing a secondary cancer.

Some long-term and late effects become evident with maturation (puberty), growth, and the normal aging process. However, early intervention and healthy lifestyle practices (not smoking, good nutrition, exercise, regular screenings, and follow-up) can help lessen any future late effect's occurrence or severity.

Talk with your child's treatment team about possible long-term and late effects. Their risk for developing long-term or late effects can be influenced by:

• Treatment type and duration
• Age at the time of treatment
• Gender
• Overall health

Long-term and late effects can affect your child in a number of ways. The range and severity of potential long-term and late effects vary. Some children will either have no significant long-term, late effects, or very mild effects, and others may have serious complications. 

Physical effects 

Chemotherapy and other drug therapies 

Children treated with chemotherapy, drug therapy, or other therapies may be at increased risk for the following side effects:

• Fatigue
• Growth delays
• Thyroid dysfunction
• Bone or joint pain, or other bone health issues
• Secondary cancers such as acute myeloid leukemia, myelodysplastic syndromes, brain tumors, breast cancer, or osteosarcoma (bone cancer)
• Heart conditions/damage (chronic heart failure, heart muscle injury)
• Lung damage (scarring, inflammation, acute respiratory distress syndrome, lung failure)
• Peripheral neuropathy  

Cancer treatment may also affect reproductive health. The risk of fertility issues depends on the specific treatment. 

Learn more about these side effects and how to manage them in children and teens.

Radiation therapy  

Radiation therapy uses ionizing radiation to kill cancer cells. Due to damage of nearby tissues, patients who receive radiation treatment may be at risk for side effects later in life, such as secondary cancers and organ damage. The risk depends on the area treated and the type and dose of radiation used. Current radiation methods available can minimize the damage done to nearby tissues. 

Children who have had radiation therapy to the head and neck can develop: 

• Growth hormone deficiency
• Hypothyroidism or hyperthyroidism
• Hearing loss
• Vision problems such as cataracts or glaucoma
• Dental abnormalities
• Brain or thyroid cancer
• Osteoporosis (low bone density)

Some children who receive radiation to the brain may not reach puberty at the normal age. A small percentage experience premature puberty, while in other children, puberty is significantly delayed.

Radiation therapy to the chest can cause:

• Lung damage (scarring, inflammation, breathing difficulties)
• Heart damage (scarring, inflammation, coronary heart disease)
• Breast cancer
• Thyroid cancer
• Hypothyroidism or hyperthyroidism

Children who receive radiation therapy to the neck and chest or total body irradiation (TBI) before a stem cell transplant have an increased risk for breast cancer later in life. Current recommendations for patients include monthly breast self-examinations; an annual clinical breast examination until the age of 25 years and then every six months; and a yearly mammogram starting at the age of 25 years or eight years after radiation therapy, whichever happens later. Patients assigned male at birth should have careful lifelong follow up. 

Radiation therapy to the testes or stomach radiation may cause fertility problems, including premature ovarian failure or premature menopause. The effect of radiation on the ovaries and testes depends upon age, dosage, and location. 

Total body irradiation for individuals undergoing a hematopoietic stem cell transplant can potentially cause ovary or testes failure, leading to fertility issues. High-dose radiation to the spleen can increase the risk of developing repeated bacterial infections.

Children's Oncology Group

The Children’s Oncology Group provides recommendations for monitoring late effects in the resource Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent and Young Adult Cancers. The information is reviewed and updated regularly by experts in survivorship care. The guidelines are written for healthcare professionals; therefore, it is best to review the guidelines with the help of your child’s healthcare team. The “Health Links” documents provided with the guidelines are written for patients and their families. As you read through these resources, write down any questions you want to address with members of your child’s healthcare team.

Psychological effects

Most childhood survivors of cancer are psychologically healthy. However, some studies indicate that a small number of childhood blood cancer survivors were more likely than healthy peers to report changes in mood, feelings, or behavior, including depression or posttraumatic stress disorder (PTSD). Talk to your child’s healthcare team if you notice any changes in your child’s mood or behavior, especially if these changes begin to interfere with their daily life.

Cognitive (Thinking) effects

Learning difficulties can begin either during treatment or may become evident months or even years after treatment. Mathematics, spatial relationships, problem solving, attention span, reading and spelling, processing of information, planning and organizing, and concentration skills are all areas of learning that may be affected. Problems with fine motor coordination, which might cause poor handwriting, can also develop.

Childhood blood cancer patients may receive therapy that affects the central nervous system (CNS). The CNS includes the brain and spinal cord. Therapies that affect the CNS increase the risk for cognitive effects including 
educational issues. Examples of these therapies include:

• Methotrexate or cytarabine, if given in high doses intravenously (IV) or injected into the spinal fluid (intrathecal [IT])
• Total body irradiation (TBI), prior to a stem cell transplantation

Receiving cancer treatment at a younger age also increases risk. Significant cognitive effects are more often associated with treatment plans that include radiation to the brain or brain surgery, neither of which are routinely used to treat childhood blood cancer.

Talk to your child’s healthcare team about any educational or learning issues that cause concern. A pediatric psychologist can perform neuropsychological testing to evaluate your child for any signs of these potential late effects.

Returning to school

Consider educating family members, friends, school personnel, and healthcare providers about your child's possible long-term and late effects of treatment. In particular, talk with teachers about your child's needs before they return to school, as they and other school personnel may not be aware of the potential for long-term and late effects of treatment.

Neuropsychological testing: Any child who is at risk for cognitive effects or is having difficulty in school should have neuropsychological testing done by a licensed pediatric psychologist or neuropsychologist to check for possible learning challenges. Ask your child’s healthcare team for a referral. Find out if neuropsychological testing is covered by insurance, as it can be expensive.

When testing is complete, schedule time for the neuropsychologist to explain the results and make any recommendations for adjustments or accommodations that can support your child at school. If needed, ask the neuropsychologist to help explain the recommendations to the school staff. These recommendations will also be used to help determine if your child needs a formal education plan, such as an Individualized Education Plan (IEP) or 504 Plan.

School psychological assessment: If neuropsychological testing is not an option, a school-based assessment may help to determine your child’s educational needs or may be required by the school. These assessments are usually performed to determine if your child is eligible for special education programs. Generally, school-based assessments are less effective at linking cancer treatment with learning or behavior problems. Ask your child’s school administrators for more information.

Be your child’s advocate

Parents may need to educate other family members, friends, school personnel, and healthcare providers about long-term and late effects. Here are some steps parents can take:

• Talk to your child's doctors and discuss the potential for long-term and late effects, as well as an ongoing plan to evaluate potential effects of treatment
• Keep a record of physical and emotional symptoms that your child experiences and discuss them with your child's treatment team
• Make sure that your child's oncology team, primary care providers, and specialists—cardiologists, allergists, and endocrinologists, for example—are in communication
• Keep all medical records, including dates and locations of treatment, specific drug and supportive therapies (such as blood transfusions),  doses, and specific sites and amounts of radiation therapy, if applicable. Keep copies of blood, marrow, and imaging test (MRI, CT scan, X-ray) results.
• Ask your child's doctor for a written summary of your child’s cancer treatment, including names of all drugs used, whether radiation was used, what type of surgical procedures were performed, and whether your child experienced any unusual or severe acute complications of cancer therapy
• Help your child develop and maintain a healthy lifestyle after treatment ends, including appropriate exercise, sun protection, good nutrition, and not smoking. Enlist the help of health professionals as needed.
• Keep follow-up appointments with the oncology team, even if your child is feeling well

Transitioning to adulthood  

Your child’s need for follow-up care will continue even after they become an adult. Educate your young adult on the importance of follow-up care.

Keep in mind that the day your child becomes a legal adult, members of the healthcare team will start asking them to make medical decisions and sign consent forms. Your young adult will need to give providers permission in order for healthcare professionals to communicate with you about their medical information.

Your young adult will need to determine who will be the primary decision maker for their continued medical care. Some young adults may feel more comfortable leaving their parents in charge of their care. Other young adults may wish to take a more active role. You may need to step back and allow your child to make decisions. Either way, be respectful of their wishes. Remind them to tell members of the healthcare team who will be the main contact person.

If your young adult moves away for college or work, they will need to find new healthcare providers to continue follow-up care. They can ask members of the healthcare team for a referral to a survivorship program in their new city. If there is not a survivorship program nearby, help your young adult to find a good primary care provider who can provide the necessary follow-up care.

Your young adult can also ask the insurance provider for a list of in-network providers. Any new providers will need to know their detailed medical history and survivorship care plan. You and your young adult should work with members of the healthcare team that treated the cancer to coordinate care and transfer medical records to new providers.

For childhood cancer survivors, maintaining health insurance is very important. Young adults can remain on a parent’s health insurance plan until they turn 26 years old. After that, they will need to find their own health insurance plan. Young adults also need to learn how to create and follow a budget and to manage their finances.

Visit Got Transition for a list of available healthcare resources and more information for you and your young adult about the process of transitioning from pediatric healthcare to adult healthcare.