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After Childhood Cancer: What to Expect When Treatment is Over

The news your child has completed cancer treatment can bring a wide range of emotions—from exhilaration and relief to anxiety and fear. While this a time full of celebration and renewed hope, your child and family might be surprised when life doesn’t suddenly go back to normal.

“Life after cancer is a new chapter, joyous to some extent, however, with varying levels of readjustment,” said Luz Pelayo-Katsanis, a pediatric hematology oncology nurse practitioner at Banner Children's at Diamond Children’s Medical Center in Tucson, AZ. “Parents and children can feel overwhelmed, feeling a sense of abandonment and stress having to navigate new challenges of returning to work or school with less of a medical support system.”

The hospital—and all its clinical and support staff—has also been your safety net and support system for information and support throughout treatment. They were the key part of what got you through. Now treatment is over, and this bubble has seemingly burst. “There’s something about the frequency of visits and continuity of staff that are comforting during treatment,” Pelayo-Katsanis said. “Now that treatment is over, sometimes you can feel remorseful, as the new normal can feel more difficult and full of anxiety without this constant support.”

What to expect after treatment ends

It’s normal to feel these mixed emotions as you take this new path forward, but it doesn’t make it any less stressful or scary. Your child and family will face unique challenges as you navigate this new normal, but the comforting news is that you aren’t alone. Here are some of the things your family can expect to navigate in life after cancer.

Frequent follow-up appointments

Although you may not be at the hospital as much these days, your child’s primary oncologist will review the “off therapy roadmap” for follow-up care. This can vary depending on your child’s cancer and the pediatric cancer center where your child was treated. Often your child will return to their cancer center on a regular basis for follow-up exams, check-ups, tests and scans once a month or every three months during the first year. Gradually, the appointments will become more relaxed.

“Once your child reaches the two- to three-year off therapy point, the focus shifts from potential recurrence to keeping alert for potential late effects of the treatment,” said Lucille McElrath, a pediatric hematology oncology nurse practitioner at Banner Children’s Cancer & Blood Disorders Clinic in Mesa, AZ.

While all pediatric cancer care teams strive to reduce the side effects from treatment, your child could still have significant side effects from treatment—within a year or even years later in adulthood.

“Most every medical intervention (chemo, radiation, surgery, transplant) may pose a risk for late effects,” McElrath said. “This is why life-long monitoring is necessary to keep your child as healthy as possible.”

Emotional adjustments

Just as cancer treatments affect you physically, it can affect how you feel, think and do things. After treatment ends, it’s not unusual for your child to exhibit a rollercoaster of emotions and changing behaviors. Expect that there may be some not-so-great days and give yourself and your child time to adjust.

Every child’s experience with cancer is different, so their feelings and emotions are unique as well. As a caregiver, you may experience behavioral and emotional challenges too. If you find it hard for your child to talk to you about what they are going through, you may want to consider speaking with a specialist who can help your family adjust. Ask your child’s cancer care team to refer you to a counselor.

A return to school and activities

When your child returns to school, they may have unexpected challenges they didn’t have to face before—such as academic, physical, emotional or social. They may have fallen behind academically. Radiation therapy may have caused memory issues and learning delays. Your child may now feel disconnected from peers and classmates.

To make the transition back to school smoother, connect with your child’s school administration and teachers to explain your child’s treatment and the effect it might have on their academic performance and social development. They can work with you to make necessary classroom adjustments and provide additional services, resources and tools to support your child and help get them back up to speed.

“Engaging the school staff, hospital teacher liaison, social worker and child life specialist are important in school re-entry,” Pelayo-Katsanis said. “For younger ages, sometimes engaging the teacher and class is helpful. Let the other kids know that their classmate was sick but what they had was not contagious, and that they may look different, etc.”

Age-appropriate tips to help your child adjust after cancer

While this is a time for celebration, it’s understandable if your child is a bit fearful and nervous—you very well may be too. Pelayo-Katsanis shared some age-specific tips you can use to help your child adjust.

For babies and toddlers: During your child’s treatment, they spent a lot of time with you, so separation anxiety can occur—even past what is expected in normal development. Getting together with other parents and their kids who’ve experienced cancer can be fulfilling and can help begin reintroducing other supportive parents.

For school-aged children: School-aged children have a lot of anxiety returning to school.  Your child may look different and feel different and many of their interactions were with adults during their treatment. It’s helpful to engage the school and hospital teacher liaison early on to help prepare the child and classmates prior to the return of school.

For young adult children: Young adults after cancer treatment are typically the same age developmentally when they first started undergoing cancer treatment. After treatment, your child may try to make up for missed opportunities and participate in risk-taking behaviors. They may also have body image issues or suffer from depression or anxiety, which is common among young adult survivors. If you notice they’re struggling, be there for them, seek out peer support groups or ask your care team for a referral to a specialist who can help.

Build a network of support

Having a child who fought and beat cancer can change a family’s life forever. Don’t hesitate to reach out to your child’s pediatric cancer center team for support or a list of resources. Doing so can help bring meaning to this life-changing experience and help you move forward.

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