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.”

Pediatric cancer patient swims with a dolphin — Griffin, a pediatric acute myeloid leukemia patient

Now Griffin returns to the hospital every few months for check-ups. While Shannon is happy her son is through with chemotherapy, 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.

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 for 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, 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, life centers on constructing a “new normal” after cancer. Challenges may include:

Emotional adjustment
Your child’s return to school
Parenting concerns
Health care needs

After therapy ends, expect a rollercoaster of emotions. This time is a significant period of adjustment.
- You may feel the joy of no more treatment and the worry that cancer will come back.
- You may experience the happiness of returning to familiar activities and the anxiety of taking care of child who has been through cancer treatment.
During this time, focus on the positive. Remember that treatment has ended and check-ups are less frequent because research and experience show that it is OK to do so.

However, acknowledge not-so-positive feelings such as sadness and anxiety and 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.

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.
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 their therapy, children may experience hair loss and changes, problems with motor skills, weight gain or loss, skin conditions, growth problems, or frequent tiredness and fatigue.
- Emotional: During transition, children and teens may experience problems with self-esteem and depression 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 experienced a loss in social life, routine, and independence.
To make the transition to school smoother, parents and students should keep in regular contact with 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 to explain your child’s treatment and the effect it might have on school performance and social development. Assess the need for educational support – 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.
Children crave structure and routine. During cancer treatment, the family’s structure and routine are interrupted. When cancer treatment ends, a new structure must be established. Discipline may have taken a back seat while the child was sick.

Parents and children may have been separated during treatment and now everyone is back together again. Everyone will need 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 also 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 patient’s medical background and needs.

Ask about access to medical records:

Is there a patient portal for secure online access?
What is the procedure for getting hard copies of records?

When patients make the transition to long-term follow-up care, they will receive a survivorship care plan, which will include 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 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 determine whom to contact when you have different questions about your child’s health. It is very common for parents to worry about who to call first – the pediatrician or oncologist.

Schedule an appointment with the primary health care provider to discuss the child’s health care needs. Childhood cancer is so rare that pediatricians may work their whole careers without having treated a patient with cancer.

Also, ask the provider if there are any immunizations your child needs. 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

Families should assess their insurance coverage before returning home. If they don’t have adequate medical coverage, ask a social worker or nursing care manager for help locating resources.

Lead a healthy lifestyle

Leading a healthy lifestyle 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 – even if you think you won’t need them. Having a child with cancer changes the family’s life forever.

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

Questions to Ask at End of Treatment

Write down a list of questions and concerns to ask the care team.

How often will we need to come back to the oncology clinic for check-ups, lab tests, scans, etc? How long will we continue to return for follow-up care?
What types of tests and scans will be 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?
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?
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?
When can my child resume his or her immunizations?
Are flu shots recommended?
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?
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 transition to adult-based care when my child becomes a young adult?