Long-Term Follow-Up for Children

At Memorial Sloan-Kettering, we recognize that follow-up care is critical to the health and well-being of childhood cancer survivors. Through our Long-Term Follow-Up Program, we screen, monitor, and manage the health of young survivors beginning approximately two years after treatment ends, checking for potential late complications and ensuring that our patients are achieving the best possible quality of life.

The program, directed by pediatric endocrinologist and survivorship expert Charles Sklar, is available to children and adolescents up to age 18 who have been off treatment for approximately two years. The majority of our patients are referred by their treatment team at Memorial Sloan-Kettering, although we do accept survivors treated elsewhere.

As a survivor, your child may be followed by his or her primary medical team to check for cancer recurrence. Our team of experts often works in conjunction with your child’s primary physician to monitor the heart and lungs, growth and development, as well as cognitive or learning issues resulting from treatment. Delayed or late effects occur in some but not all survivors, and may be mild, moderate, or severe. Some late effects may not be obvious until years after treatment.

We understand each survivor’s risk of long-term side effects is different, based on age, gender, and type of treatment. Therefore, we develop an individualized screening and counseling program based on your child’s characteristics and medical history.

Our services include:

• Initial Consultation and Treatment Summary – Dr. Sklar and our specialized nurse practitioners evaluate each child in the Long-Term Follow-Up Program. Before the initial consultation, we review and summarize your child’s medical records. We meet with a medical team – including a radiation oncologist, neuropsychologist, cardiologist, and primary medical oncologist – to discuss past treatment and to develop a plan for future healthcare management and screening. In addition to performing a complete medical exam, we review this summary at your child’s first visit. We also discuss the care plan that we have developed and any particular issues of concern. We can explain to your child and family the potential long-term complications of treatment and the likelihood that your child will experience these.

• Screening and Treatment for Late Effects – Our program’s mission is to – at the earliest stages – detect and treat existing problems and screen for potential complications resulting from past cancer therapy at the earliest stages. Some of the delayed effects that we treat involve the endocrine system, including hormone disturbances resulting in short stature, delayed puberty, and thyroid disorders. We closely monitor other issues related to vital organs, such as the heart and lungs, and learning, referring your child to appropriate clinical specialists when necessary.

• Referrals and Coordination of Health Care – We work closely with your child’s other physicians to ensure well-coordinated care, as our program is not intended to replace the primary care provider or pediatric oncologist. Once your child finishes treatment, we recommend that he or she establish a relationship with a local healthcare provider who is available for sick visits as well as routine, yearly physical examinations. We can also suggest various community resources available to childhood cancer survivors.

We typically monitor and care for patients up to age 18, when we begin to transition them to the Adult Survivors of Childhood Cancer program.

In addition to caring for survivors, our experts have participated in a large national study called the Childhood Cancer Survivor Study since it began in 1994. Through this study, we are learning about the health of childhood cancer survivors as they enter their 20s, 30s, and 40s to try to understand the consequences of various cancer therapies and learn how to best prevent and treat these effects in the future.