Ringing the bell is a celebratory time for kids who have been diagnosed with cancer. The bell marks the end of active treatment and often signifies a child is continuing on their path as a cancer survivor. With the survival rate for childhood cancer higher than 80%, this means a lot of bell ringing for the more than 26,000 youth (birth through age 22) who will be diagnosed with cancer this year as projected by the American Cancer Society. 

While the high rate of survival for our kids is a triumph of modern medicine, with successful treatment a new challenge emerges. Childhood cancer survivors often undergo rigorous treatment regimens that result in a life-long risk of adverse health effects, called “late effects”. 

What are late effects?   

Late effects are health problems that arise from the treatment of cancer. While most side effects are temporary and subside a short time later, some problems don’t go away or show up months or even sometimes years after treatment is over. 

Approximately two-thirds of childhood cancer survivors will experience late effects from their cancer treatment, including health, neurocognitive, and psychosocial late effects. Late effects can relate to different health conditions, the way the child’s brain works, how they learn, the way they experience emotions, and the emotions that they feel.

Who is at risk for late effects?

Experiencing late effects is largely dependent on the type of cancer a child is diagnosed with, where the tumor was located, and what treatments were administered. Late effects in those who have experienced brain tumors and Leukemia have been studied the most, as these cancer types make up the largest portion of childhood cancer. 

Certain classes of chemotherapy result in late effects more often than others, especially when the chemotherapy is administered at high doses or when administered intrathecally (in the spinal fluid). Similarly, radiation therapy is associated with a higher likelihood of late effects. However, it is important to note that just because a child received a certain type of treatment does not guarantee they will or will not experience late effects. Researchers are still working to understand why some children experience late effects while others do not.

What can I do if I think there are emerging late effects?

There are questions you can ask that begin to help determine whether there are emerging late effects for someone who has undergone cancer treatment. One of the most important things to look out for is change.  

Questions you can ask include: 

• How is school or work going? This might include grades, attendance, or the need for additional support. Have there been changes in school/work performance or has this remained consistent?
• Has the child or adolescent continued to meet developmental milestones?
• How are they getting along with others socially? Have there been changes in their interactions with others?
• What is their mood or behavior like? Have you noticed changes?
• Does the child/adolescent need additional support with dressing, chores, transportation, or adherence to medical advice? Has there been a change in level of independence?

If you notice a change in any of the areas above, you can consult the child’s primary physician and/or their oncologist with your concerns. For concerns with learning, mental health, and social functioning you may also consider seeking out a mental health provider or neuropsychologist to discuss whether additional assessment may help in supporting the child.

Continuing the support for cancer survivors

Completing cancer treatment comes with a range of emotions. There is celebration and joy, but there is also fear and uncertainty. It can be a time when survivors feel “lost” and that they must now “fend for themselves.” Educating yourself about the late effects of cancer treatment is one way to ally with survivors of childhood cancer and let them know we are in this together.