Supporting Your Child after Treatment
For more information about the Long-Term Follow-Up Program or to make an appointment, call 833-MSK-KIDS
The road from a child’s cancer diagnosis to treatment and recovery can be a long one. While you and your child may feel relieved that this part of the journey is over, many parents also find themselves wondering, what now?
At MSK Kids, our answer is simple: Don’t worry; we will always be here for you.
The cancer survivorship experts in our Long-Term Follow-Up Program start working with your child’s care team within one to two years after therapy is completed. We recognize that follow-up care is critical to the health and well-being of children and teenagers who have been treated for cancer. MSK Kids provides screening, monitoring, and health recommendations. We notice and take care of any late complications that may come up and ensure that your child has the best quality of life possible.
A History of Leadership
The Long-Term Follow-Up Program at MSK Kids is one of the oldest programs for childhood cancer survivors in the country. We have participated in the Childhood Cancer Survivor Study (CCSS), a major multicenter study, since its launch in 1994. This investigation tracks short-term and long-term complications, side effects, and the overall health of people treated for cancer as children. We also have our own large clinical research database containing information about the many young patients we’ve treated at MSK as far back as 1991. We can use that to look for answers to today’s questions about the health of pediatric cancer survivors. We work toward the best health for your child by coupling this research with our state-of-the-art patient care.
Who is eligible for pediatric cancer survivorship services?
We begin to care for children and teens one to two years after they complete cancer treatment and continue until age 21. While most of our patients were treated at MSK Kids, we also care for pediatric cancer survivors who were treated elsewhere.
Why is a survivorship program important?
Some, but not all, pediatric cancer survivors experience delayed effects of treatment. Also called late effects, these may arise in the short term or many years later. Through the CCSS, we have been learning about the health of childhood cancer survivors as they enter their 20s, 30s, 40s, and beyond. We and other experts want to understand the effects of various cancer treatments so we can learn how to prevent and treat them in the future. Thanks to the CCSS, doctors now know which treatments have been the most toxic and try to reduce their use whenever possible.
What You Can Expect
When your child finishes treatment, they will still see their primary medical care team to look for any signs of the cancer coming back. Our survivorship team begins working with your child’s primary doctor to check their heart and lungs, monitor their growth and development, and see if there are any cognitive (thinking) or learning issues related to treatment. Each child’s risk of late effects is unique. It depends on such factors as age, gender, cancer type and stage, and type of treatment. Our team customizes a care plan that includes screening and counseling to meet your child’s individual needs. Here’s what you can expect:
- Your child’s treatment summary — Our team reviews and summarizes your child’s medical records and meets with a number of our experts to discuss past treatment. This group includes a radiation oncologist, neuropsychologist, cardiologist, and your child’s primary medical oncologist. Together, we develop a plan for your child’s future healthcare.
- Initial consultation — During your child’s first visit with us, we review the treatment summary, perform a complete medical exam, and discuss our recommended care plan with you. We will explain to you and your child the potential long-term effects of treatment and how we will monitor for them in the future.
- Screening for and treating late effects — Finding and treating late effects caused by cancer treatment as early as possible gives your child the best chance of a healthy life. Some late effects involve the endocrine (hormonal) system, which can affect their height, delay puberty, and cause thyroid problems. Other late effects involve the heart and lungs. Some children may have learning difficulties. Our team performs blood tests and other exams to look for all the late effects related to your child’s treatment. We will refer your child to appropriate specialists as needed.
- Referrals and coordination of healthcare — Your child’s pediatrician and other doctors are an important part of their care, and we don’t want our program to replace that. We work closely with those doctors, staying in touch and making sure we are all on the same page. Once your child finishes cancer treatment, we recommend that you continue primary care through a healthcare provider near your home who is available for sick visits as well as routine physicals. We can also connect you with outside resources for childhood cancer survivors.
What happens when my child turns 21?
We have a program for adults, too: Memorial Sloan Kettering’s Adult Survivorship Program. Here, we provide long-term care that can help prevent, detect, and treat any late effects of cancer treatment that may arise in adulthood. Across the country, many childhood cancer survivors who are 21 and older do not receive the required monitoring they need as young adults — a major challenge in healthcare. We created the Adult Survivorship Program to fill that gap. Our survivorship team is here for you and your child for a lifetime.