Survivorship Care for Children

While the completion of your child’s cancer treatment is something to celebrate, it may also bring new challenges. You may worry that the cancer will return. Your child may struggle to get used to new routines. Some families enter this new phase feeling stronger, whereas others are more fragile. Many families are surprised by anxious feelings that arise during this long-awaited time, when they expected to feel only relief. Instead of this being a time to go back to life as it used to be, it may be a time of continued adjustment, as you leave the security of the people on your child’s health care team. Some said the transition to life after treatment took longer and was more challenging than they thought it would be.

Follow-Up Care After Cancer Treatment

It’s both reassuring and essential that your child receive follow-up care from specialists after completing treatment for cancer.

Credit: National Cancer Institute

Get a written copy of your child's treatment summary and survivorship care plan. Ask for recommendations to hospitals that offer the type of follow-up or survivorship care that your child needs.

Treatment Summary

The treatment summary includes both diagnostic and treatment information, such as:

Type of cancer, severity (stage, grade, or risk group), date of diagnosis, and pathology report
Type(s) of treatment received, including the names and doses of all medications, as well as the total amounts and sites of any radiation therapy received
Treatment dates
Key reports and scans, such as CT scans and MRIs
Side effects and/or complications experienced during treatment
Supportive care received (also called palliative care)—such as counseling or physical therapy
Identifying number and title of the clinical trial, if your child was in a clinical trial
Names and contact information of key people on your child’s health care team

Survivorship Care Plan

A survivorship care plan (also called a follow-up care plan) is developed for each child. Survivorship care plans are based on the type of cancer and treatment your child received. For example, some children may need to return for visits each month for the first year after they have completed treatment. Others may not need to return as often. Here is the type of information that’s included in follow-up care plans for children who have been treated for cancer, as outlined in the Institute of Medicine's Cancer Survivorship Care Planning fact sheet:

Exams and tests/procedures to check for the recurrence or metastasis of cancer, and a schedule of when they are needed
Care and support to manage any long-term side effects and check for late effects
Psychosocial support or counseling, and referrals as needed
Referrals for legal aid or financial support, as needed
Referrals to, and coordination with, specialists such as cardiologists, education specialist, endocrinologists, physical therapists, and psychologists and to appropriate treatments, clinical studies, and rehabilitation specialists
Recommendations for healthy behaviors, such as advice regarding nutrition and physical exercise
Family-based care, education, and outreach to your child and family

Follow-Up Care Clinics/Survivorship Clinics

Places that specialize in follow-up care for children who have been treated for cancer are called follow-up care clinics or survivorship clinics. At these clinics, your child will see specialists (in cardiology, endocrinology, fertility, nutrition, psychology, and/or pulmonology, for example) who will monitor your child’s health. These clinics are usually found within hospitals.

If the hospital where your child was treated does not have such a clinic, ask your child’s doctor to recommend one. You can also refer to the Children’s Oncology Group which has a Late Effects Directory of Services that can help you find a hospital that offers services for late effects of treatment for children’s cancer .

Long-Term and Late Effects

While it may take a while for your child to get used to their new schedule, it’s important to check with your child’s doctor for new problems or side effects that don’t seem to get better after treatment.

Credit: iStock

Although many side effects go away once treatment has ended, long-term side effects, such as fatigue, may take some time to go away. Other side effects, called late effects, may not occur until months or even years after treatment.

Whether or not your child may have late effects of treatment depends on the type of cancer your child had and how it was treated, as well as personal factors, such as:

Cancer-related factors such as the type of cancer, where it was in the body, and how it affected tissues and organs
Treatment-related factors such as the type and dose of treatment(s) or the type of surgery
Patient-related factors such as your child’s gender, age at diagnosis, length of time since diagnosis/treatment, personal and family health history, and health habits

Types of Late Effects

Late effects may be physical, emotional, or cognitive. Knowing what symptoms to be aware of and when they may occur can help you plan for the needs of your child. Not knowing what to expect can cause anxiety for some parents. However, for other parents, knowing about late effects that may or may not happen to their child in the future can be overwhelming. Many parents find it helpful to ask their child’s doctor what to focus on at each step of their child’s recovery.

Physical Late Effects

Physical late effects involve changes to organs, tissues, and/or body functions. They may affect your child’s growth and development. Some children who have been treated for cancer have many physical late effects, whereas others have relatively few. As you talk with your child’s doctor to learn what to expect, you can learn more about treatments that may increase the risk of physical late effects in Late Effects of Treatment for Childhood Cancer.

Emotional Late Effects

Emotional late effects include changes to your child’s mood, feelings, and actions. Many children are very resilient after cancer treatment. Others experience social and/or emotional problems. If your child is not sleeping well and no longer enjoys activities that he once did, it is important to talk with your child’s doctor about having your child evaluated for depression.

Some children develop post-traumatic stress disorder (PTSD). This anxiety disorder arises in reaction to physical injury or severe mental or emotional distress. Symptoms of PTSD may include having flashbacks about diagnosis or treatment, avoiding places that are reminders of the experience, and being fearful, irritable, unable to sleep, or having difficulty concentrating. Ask your child’s health care team to suggest resources for mental health support in your area.

Cognitive Late Effects

Cognitive late effects include changes in your child’s ability to memorize, learn, and think. These types of late effects are more likely to occur in children who’ve had certain cancers such as brain and spinal cord tumors, head and neck cancers, and some types of leukemia, such as ALL. Treatments such as radiation therapy to the head and certain types of chemotherapy also increase the risk of cognitive late effects. These late effects are also more likely in children who were very young during treatment, who received very high doses of treatment, and whose treatment lasted for a long time.

Children with cognitive late effects may have a more difficult time:

Memorizing or remembering
Learning (handwriting, spelling, reading, vocabulary, and/or math may be particularly challenging)
Thinking (including concentrating, completing work on time, doing work that involves multiple steps, problem solving, and planning)

Questions to Ask Your Child's Health Care Team

As you talk with your child's doctor, here are some questions to consider:

About treatment

Who should we talk with to get a comprehensive record of treatment(s) and medications that our child received during treatment?

About practical steps to take at home

What health problems in our child should we be aware of?
Who should I contact if health problems occur?
Does my child need to continue taking any medicine(s)? If so, for how long?
What types of activities may help my child? Are any activities not recommended?
What vaccines should my child receive? When should they be given?

About follow-up care (plan and schedule)

Who should I talk with to get a follow-up care plan and schedule for my child?
What medical experts should my child see for follow-up care?
What tests will be done during follow-up care visits? How often and for what reason?
Where should my child go for follow-up care visits?
What is the schedule for these visits?

About possible long-term and/or late side effects

Is my child at increased risk of having long-term side effects? If so, which ones and how can they be managed?
Is my child at increased risk of developing late effects later in life? If so, which ones? How likely are these to occur? How long after treatment might they occur?
What types of specialists should my child see to manage these effects?

About support and coping

What survivor support groups are available for my child? For our family?
What are the benefits to my child of receiving professional counseling? Is this something you recommend for my child? Why or why not?