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Transition Off Childhood Cancer Treatment

The end of cancer treatment is a joyful time for childhood cancer patients and their families. Friends throw confetti at “off chemo” parties. Patients ring bells or bang gongs after finishing radiation treatments.

However, this time of transition can also be a period of uncertainty and anxiety. It’s normal to feel this way.

No mo' chemo congratulations card with signatures from a pediatric patient's care team.

The end of cancer treatment is a joyful time, but it is also normal to feel uncertainty and anxiety during the transition.

The hospital has provided a safety net of information and support. Regular lab work, imaging scans, and clinic appointments provide a steady stream of updates about what’s going on with your child medically. Families going through the same situation are everywhere. They can immediately relate to your life.

“You really become close to your medical team and to the other families you see waiting for appointments,” said Shannon, mother of Griffin, 7, who was treated for childhood acute myeloid leukemia. “It’s like a family. You miss those friendships.”

Now Griffin returns to the hospital every few months for check-ups. Shannon is happy her son is finished with chemotherapy. But she misses the regular contact of the close network she was part of while Griffin was in treatment.

On the other hand, it is nice to do normal, everyday tasks like cleaning her own house, she said. A group of friends paid a cleaning service for her house during her son’s treatment, which was wonderful, but she likes returning to a regular routine.

Pediatric cancer patient swims with a dolphin

Griffin, a pediatric acute myeloid leukemia patient

Transitioning off childhood cancer treatment can be a period of uncertainty and anxiety for survivors. In this image, a childhood cancer survivor walks down a hospital hallway behind hospital staff.

After childhood cancer treatment ends, patients will return to their cancer center on a regular basis for follow-up check-ups, tests, and scans.

Frequent follow-up

After cancer treatment ends, patients will return to their cancer center on regular basis for follow-up check-ups, tests, and scans. This follow-up period lasts between 2 to 5 years, depending on the pediatric cancer center and the patient’s diagnosis. This phase is sometimes referred to as off therapy.

After this first follow-up period, patients move to long-term follow-up for childhood cancer survivors. The goal of long-term follow-up care is to help cancer survivors stay as healthy as possible and to monitor for late effects. Late effects are side effects of treatment that appear months or years later. The schedule and details of follow-up visits vary depending on the cancer center and the patient’s needs.

Challenges to expect

Any transition comes with challenges. The focus before has been getting through treatment. When treatment ends, you and your family must construct a new normal after cancer. Challenges may include:

  1. Emotional adjustment

    After therapy ends, expect a lot of emotions. This time is a period of adjustment.

    • You may feel the joy of no more treatment and the worry that cancer will come back.
    • You may be happy to return to familiar activities.
    • You may also be anxious about taking care of a child who has been through cancer treatment.

    During this time, focus on the positive. Remember that treatment has ended. Check-ups are less frequent because research and experience show that it is OK to do so.

    After treatment ends, don’t feel pressure to return quickly to old ways of doing things. You are still in limbo. Give yourself time to adjust. Think about your life. What routines need updating? Use this time of transition to make needed changes.

  2. Get support

    While this may be a joyful time, acknowledge other feelings such as sadness and anxiety. Develop strategies to deal with them. Name your fears. Talk to someone about them. Reach out to a social worker, psychologist, or nurse care manager at the hospital. Find a mentor such as a person who has been through a similar situation. Some hospitals have a parent mentor program.

    Your child’s health care team supported you during treatment, and you might miss that support when you go home. The end of your child’s treatment can also stir up many different emotions. New sources of support can help you cope.

    Your health care team can help you look for support at home, such as family and friends, counselors, clergy, and your children’s school. Tell them about your concerns as your child gets ready to leave treatment, so they can help you start looking for support in your home community.

    Help your child transition

    Children of all ages can be anxious when treatment ends, but they might have trouble showing or telling you how they feel. Here are some tips for helping children of different ages.

    Help your baby (0–12 months)

    Babies getting treatment might have fewer chances to explore the world around them and reach developmental milestones. After treatment, your baby will likely begin to develop more quickly.

    Building trust with parents and caregivers is important to a baby’s development. That’s because it helps the baby separate from te from you without getting to upset. After treatment, your baby might separate from you easily at home or in other familiar places but might cling to you during clinic visits or in new places. You can:

    • Offer comfort positions throughout visits.
    • Use the same caregivers when possible.

    Help your toddler (13–36 months)

    Many toddlers might act more like babies during treatment. For example, potty training might be slow, separating from parents and caregivers might be a challenge, and temper tantrums might increase. Help your toddler adjust to life at home by being consistent and by setting limits. You can:

    • Give your toddler choices, when possible, to help them learn to be more independent.
    • Allow them to play and express emotions in helpful ways.

    Help your preschooler (age 3–5)

    Preschoolers need consistent limits at home. Your preschooler might have had extra attention, toys, or other presents during treatment. If they do not get the same amount of attention after treatment, your preschooler can feel like this is punishment. It may take time for them to adjust to this shift in attention and to being a typical kid. You can:

    • Offer more chances for free play and art activities to help your child express emotions.
    • Answer questions as honestly as possible in words your child can understand.

    Help your school-age child (age 6–9) or pre-teen (age 10–12)

    If your child has been out of school during treatment, talk to your health care team about whether your child can benefit from a school re-entry program. A re-entry program can help your child’s teachers and fellow students learn about your child’s diagnosis, treatment, and the effects of illness and treatment. Having well-informed teachers and friends can help your child get back on track at school.

    School-age children might ask why treatment ended. They may wonder about what will happen now. You can:

    • Be honest with your child. Answer their questions as fully as you can.
    • Give your child’s classmates safe and appropriate ways to spend time with your child.

    Help your teen or young adult (age 13–19)

    Challenges for teens and young adults include:

    • Going back to friends, classmates, and coworkers
    • Rejoining clubs and teams
    • Making college choices
    • Developing careers

    Cancer treatment can affect all these life events. While many teens try to put treatment behind them and not look back, this can actually cause more problems. You can:

    • Help your teen or young adult understand that ending cancer treatment does not mean they no longer need health care.
    • Share information with peers and coaches while respecting your child’s privacy.
    • Remind your teen or young adult that getting back to normal life takes time.

    Family adjustment

    If you or any of your children have trouble adjusting to life at home, talk to friends, teachers, or a counselor. Counselors can sometimes help kids express feelings they might not share with a parent. Ask your child’s doctor or school about counselors in your area. Camps and support groups give kids and teens with similar health care experiences a chance to have fun together. Here they can share their experiences.

  3. Returning to school

    Mother hugs daughter at commencement ceremony

    Your child can have a positive experience in school after treatment.

    When children and teenagers return to school after cancer treatment, they may have challenges they didn’t face before. These issues may be academic, physical, emotional, or social.

    • Academic/ Behavioral: Children sometimes fall behind because of missed school days. Certain cancer treatments, particularly when they involve the brain or spinal cord, can affect brain function. Children may struggle with thinking, processing, attention, and organization.
    • Physical: Sometimes a child’s appearance changes because of cancer treatment. Depending on the therapy, children may have hair loss and changes, problems with motor skills, weight gain or loss, skin conditions, growth problems, or frequent tiredness and fatigue.
    • Emotional: During the transition off treatment, children and teens may have problems with self-esteem and depression. This may happen especially if they have problems academically and socially.
    • Social: Sometimes children may miss developmental stages in social growth while they are out of school undergoing cancer therapy. They may return to school socially less mature than their peers. Children may have had a loss in social life, routine, and independence.

    To smooth the transition to school, keep in regular contact with your child’s teachers and classmates during treatment. Keeping up with what is going on at school will ease the return to school.

    Before going back to school:

    • Schedule a meeting with teachers and administrators. You can explain your child’s treatment and the effect it might have on school performance and social development.
    • Assess the need for educational support, such as classroom modifications, speech and language therapy, and special education services.
    • Consider having psychological testing either at the hospital or through the school system to assess the child’s needs.

  4. Parenting and marriage issues

    Children crave structure and routine. Cancer treatment interrupts the family’s structure and routine. When cancer treatment ends, you must create a new structure. Discipline may have been a low priority while the child was sick.

    Parents and children may have been separated during treatment and now everyone is back together again. Everyone needs a little time to get reacquainted and adjust to changes.

    Parents should also think about the needs of siblings. Make special time for them.

    If parents are in a committed relationship with each other, now is the time to set aside time to care for that relationship.

    Reach out to a psychologist, social worker, or chaplain at the pediatric cancer center for family counseling resources in your community.

Health care needs

Become a health care advocate

Parents and patients, if old enough, should have a solid understanding of the patient’s cancer and treatment. Ask the care team about possible late effects of treatment.

Families will need to be able to communicate with other health care providers about the child’s medical background and needs.

Ask about access to medical records:

  • Is there a patient portal for secure online access?
  • How can you get paper copies of records?

When patients make the transition to long-term follow-up care, they get a survivorship care plan. This includes a treatment summary and a plan for follow-up care.

Families can also put together their own summaries to help explain the patient’s medical history.

Resources include:

Reconnect with your primary health care provider

Reconnect with your child’s primary care provider. After the end of cancer treatment, this physician becomes your child’s main doctor for routine health care. Talk with the provider and with someone at the child’s pediatric cancer center to find out who to contact when you have questions about your child’s health. It is very common for parents to worry about who to call first – the pediatrician or oncologist.

Set up an appointment with the primary health care provider to talk about the child’s health care needs. Childhood cancer is so rare that pediatricians may work their whole careers without treating a patient with cancer.

Also, ask the provider if your child is due for any immunizations. Sometimes children may have missed certain vaccines during cancer treatment. If so, the Centers for Disease Control has the Catch-Up Immunization Schedule.

Inform other health care providers, such as dentists and optometrists, about your child’s cancer treatments and unique health care needs.

Insurance and access to care

Assess your insurance coverage before returning home. If you don’t have adequate medical coverage, ask a social worker or nursing care manager for help locating resources.

Create and maintain healthy habits

Creating and maintain healthy habits is important for everyone. It is especially important for cancer survivors.

Build a network of support and care

Ask the pediatric cancer center for a list of resources for cancer patients and survivors, such as support groups and summer camps. Do this even if you think you won’t need them. Having a child with cancer changes your family’s life forever.

Reach out to others to help make meaning from this life-changing experience.

Questions to ask at the end of treatment

Use the following list of questions and concerns to help have a conversation with your care team.

Follow-up care and medications

  • How often will we need to come back to the oncology clinic for check-ups, lab tests, scans, or other testing? How long will we continue to return for follow-up care?
  • What types of tests and scans will continue to be performed? How often? For how long?
  • Do we call the oncology team for routine illnesses and “well child” care? If not, how is that care managed?
  • If my child has symptoms and I’m not sure whether they’re due to a common illness or related to the cancer history, what should I do?
  • Should I still call the clinic if my child is exposed to chicken pox?
  • How long will my child need to take Bactrim, Dapsone or Pentamidine (or any other medication the child may be taking)?
  • When can my child’s central venous access device be removed? How is that done?

Vaccines and immunizations

  • When can my child resume his or her immunizations?
  • Are flu shots recommended for my child?

Behavior and common developmental issues

  • Are there certain behaviors, symptoms, or side effects I should expect to see in my child that are typical for someone coming off therapy?
  • What if my child has problems in school following therapy? What school problems might I expect for my child? Will the treatment team or hospital education consultant still be available to help with school adjustment or accommodation issues?
  • What are common emotional reactions families experience when treatment ends? Are there any resources that can help us adjust to this new phase?

Future health care

  • What is the chance of the cancer coming back? If it does, when is the most likely time period? What are the most likely symptoms of the cancer returning?
  • What is the long-term follow-up plan for my child? Is there a written summary of treatment and follow-up you can give me?
  • Will my child be followed in a long-term follow-up program at some point? When would that happen and where would we go?
  • Are there resources to help us move to adult-based care when my child becomes a young adult?
  • Use the following list of questions and concerns to help have a conversation with your care team.
  • Follow-up care and medications
  • How often will we need to come back to the oncology clinic for check-ups, lab tests, scans, or other testing? How long will we continue to return for follow-up care?
  • What types of tests and scans will continue to be performed? How often? For how long?
  • Do we call the oncology team for routine illnesses and “well child” care? If not, how is that care managed?
  • If my child has symptoms and I’m not sure whether they’re due to a common illness or related to the cancer history, what should I do?
  • Should I still call the clinic if my child is exposed to chicken pox?
  • How long will my child need to take Bactrim, Dapsone or Pentamidine (or any other medication the child may be taking)?
  • When can my child’s central venous access device be removed? How is that done?
  • Vaccines and immunizations
  • When can my child resume his or her immunizations?
  • Are flu shots recommended for my child?
  • Behavior and common developmental issues
  • Are there certain behaviors, symptoms, or side effects I should expect to see in my child that are typical for someone coming off therapy?
  • What if my child has problems in school following therapy? What school problems might I expect for my child? Will the treatment team or hospital education consultant still be available to help with school adjustment or accommodation issues?
  • What are common emotional reactions families experience when treatment ends? Are there any resources that can help us adjust to this new phase?
  • Future health care
  • What is the chance of the cancer coming back? If it does, when is the most likely time period? What are the most likely symptoms of the cancer returning?
  • What is the long-term follow-up plan for my child? Is there a written summary of treatment and follow-up you can give me?
  • Will my child be followed in a long-term follow-up program at some point? When would that happen and where would we go?
  • Are there resources to help us move to adult-based care when my child becomes a young adult?

Source: Children's Oncology Group

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Together does not endorse any branded product mentioned in this article.

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Reviewed: September 2022

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