Childhood cancer survivors are at risk for developing treatment-related health problems called late effects. These can result from both the cancer itself as well as the treatment for the cancer. Unlike side effects that occur during or right after treatments (such as chemotherapy or radiation therapy), late effects are defined as occurring several years after a cancer diagnosis and successful treatment. Because almost 79% of children treated for cancer survive five years or more after treatment and are presumably cured, preventing and recognizing late effects is an important part of cancer care.

Late effects risk

Any cancer treatment may cause late effects. Treatments such as chemotherapy, radiation therapy, bone marrow transplant, and stem cell transplant harm healthy cells and cancer cells. Surgical procedures may also cause late effects. A child's risk of developing late effects depends on:

• Type and location of cancer
  
  
• Area of the body treated
  
  
• Type and dose of treatment
  
  
• Child's age when treated
  
  
• Genetics/family history
  
  
• Health problems that existed before the cancer diagnosis

Before treatment begins

Parents of a child diagnosed with cancer should discuss the possibility of late effects with a pediatric oncologist (a doctor who specializes in treating children with cancer) before treatment begins. Any cancer treatment, such as chemotherapy or radiation therapy, may cause physical or emotional late effects. Not all children will develop late effects, but a pediatric oncologist can help patients and families understand and weigh treatment risks.

These questions may be helpful when you talk to your child's doctor about follow-up care:

• What are the potential late effects of the treatment you've recommended?
  
  
• What can be done to lower risks for late effects during and after treatment?
  
  
• What symptoms of late effects should I look for?
  
  
• What do I do if I notice a late effect?
  
  
• Do you have experience with treating cancer survivors?
  
  
• Can you recommend a follow-up clinic that specializes in late effects?

During treatment

If your child is being treated for cancer, work with your child's doctor to create and regularly update a detailed summary of treatment information. This document can be used to create an individualized plan for late effects screening and check-ups. It's also important that other health-care specialists who treat your child have a copy of the treatment summary. The treatment summary should be given to your child when they complete therapy. They should be updated and made available to the survivor as they enter adulthood.

A treatment summary should include:

• Patient's name and birth date
  
  
• Original diagnosis date and date of any recurrence (times the cancer returned)
  
  
• Type of cancer, including details such as tissue or cell type, and stage or grade
  
  
• Place of treatment, and name and phone number of the primary oncologist
  
  
• Dates of all treatments, treatment types, methods and areas of administration, dose amounts, and number of treatment cycles
  
  
• All drugs used in treatment, with names, doses, and number of cycles (this includes drugs such as steroids and antibiotics)
  
  
• Treatment-related complications
  
  
• Date of treatment completion
  
  
• Diagnostic tests performed and results
  
  
• Possible long-term effects based on treatment and possible symptoms
  
  
• Recommendations for late effects screening tests and check-ups

After treatment

Check-ups and screening tests. Most childhood cancer survivors need to see their doctor at least once a year for a check-up, even if they feel healthy. Depending on the treatment received, a survivor may also need specific screening tests that can help detect late effects early. Screening tests may include imaging tests, such as x-rays or computed tomography (CT) scans, blood tests, and physical examinations. Screening recommendations are available at www.survivorshipguidelines.org. Recommendations vary depending on a patient's treatment and health history. Talk with your doctor to determine which screening tests are needed and how often.

Follow-up clinics. Many hospitals and health facilities now offer follow-up clinics or services for survivors of childhood cancer. Follow-up care generally begins two years after treatment and focuses on monitoring late effects and general wellness (survivors continue to see their oncologist for check-ups aimed at detecting recurrence). Follow-up clinics are staffed by health-care providers familiar with the possible late effects of childhood cancer, and provide a number of services, including:

• Education on potential late effects for a survivor's specific diagnosis and treatment
  
  
• Screening for and monitoring of late effects
  
  
• Referrals to doctors who specialize in areas of the body affected by late effects
  
  
• Help with treatment-related school and work difficulties
  
  
• Support for emotional issues of survivors and family members
  
  
• Wellness education and programs
  
  
• Education on reducing health risk-taking behavior, such as smoking and tobacco use
  
  
• Information on reproductive health
  
  
• Transition to adult health care
  
  
• Assistance with health insurance and financial issues

Some clinics will see survivors until they are 18 years old, while others will see patients of any age. Ask your doctor to help you locate a follow-up clinic that meets your needs, or visit www.acor.org/ped-onc/treatment/surclinics.html, or www.beyondthecure.org/resources/follow-up-clinics to view listings of follow-up clinics. If you can't find a clinic near you, some clinics are willing to see a survivor for a thorough, one-time evaluation and develop a long-term health-care plan for late effects.

Minimizing risk of late effects. Practicing healthy behaviors can minimize severity of late effects and reduce the risk for second cancers and other diseases.

• Don't smoke or chew tobacco, and avoid secondhand smoke
  
  
• Protect skin from sun exposure
  
  
• Limit alcohol consumption
  
  
• Avoid illegal drug use
  
  
• Eat a healthy diet low in fat and high in fiber
  
  
• Exercise regularly
  
  
• Get recommended vaccinations, such as a flu shot

Symptoms of late effects

Several parts of the body can be affected by late effects, which means there are a wide range of symptoms that can indicate a treatment-related health problem. Talk with your doctor if you experience these or any other symptoms:

• Chest, bone, or abdominal pain
  
  
• Breathing problems or frequent coughing
  
  
• Extreme fatigue
  
  
• Blood in the stool or urine, chronic diarrhea, or constipation
  
  
• Nausea or vomiting
  
  
• Hearing or vision changes
  
  
• Headaches
  
  
• Memory or attention problems
  
  
• Growth problems
  
  
• Skin problems, such as dry skin or sores that won't heal
  
  
• Menstrual problems in women
  
  
• Depression or anxiety

Additional Resources

Candlelighters Childhood Cancer Foundation

National Cancer Institute: Late Effects of Treatment for Childhood Cancer

More Information

Cancer.Net Guide to Childhood Cancer

Childhood Cancer Survivorship

Late Effects of Childhood Cancer (Part II)