Childhood Cancer Survivorship is its Own Emotional Journey

By Allie Neenan, PhD, LP | Last updated 12/4/24

Many people expect the end of cancer treatment to come with relief, celebration, and closure. Unfortunately, this does not represent the whole picture. It is true that finishing treatment is a major milestone for anyone who has faced a cancer diagnosis. The hope is always that the cancer will stay away, and families will be able to physically and emotionally heal. There are also a surprising number of emotional challenges that come during cancer survivorship, and this is a part of childhood cancer that most people are not aware of. 

What are some of these challenges?

Loss of Control

During cancer treatment, children and families are very active in their efforts to treat a child's disease. Oral medications, injections and infusions, surgeries, and endless other appointments take over everyone's daily routine. These treatments are exhausting and painful. They also represent what many people see as the "fight" against cancer - one of the few things that families have power over. While no one can control how a child responds to treatment, choosing to take each medication and attend each appointment is an act of working against the cancer's growth. Once treatment is over, that fight is no longer active. Although there are steps families can take to promote health and well-being, there is no known way to prevent relapse. The transition from working around the clock to "watching and waiting" can bring on anxiety for families at the end of cancer treatment.

Fear of Recurrence

Children are generally not considered to be "cured" of their cancer until at least five years after treatment is over. This is because many of the cancers children get most often have a high rate of recurrence, or relapse. Cancer is most likely to relapse during the first months and years after treatment ends, but it is always a possibility. Just like the first symptoms of childhood cancer, the signs of a relapse are often similar to those of typical childhood illnesses. When fear of cancer recurrence is very intense, every ache and bruise can seem like a sign that the cancer is back.

Survivor Guilt

The term "survivor guilt" refers to feelings of shame or unworthiness about being spared from suffering, or death, that another person had to experience. Nearly 2,000 children lose their lives to cancer each year in the United States alone. In many ways, it is a matter of luck whether a given child will survive or succumb to their disease, or the side effects of cancer treatment. This situation can lead to survivor guilt and questioning why one child survived when another child did not.

Survivor guilt can impact any member of the family. Diagnosed children may feel guilt when they see other children suffering or if they personally know a child who dies from cancer. Parents and siblings may also struggle with survivor guilt throughout the treatment journey. It is very difficult to watch a loved one suffer from cancer treatment. Many family members find themselves wondering why the child with cancer had to feel so much pain, or wish that they had been the one to become sick instead.

Changed Identity

Childhood cancer is a life-changing diagnosis. It can challenge a person's core life beliefs, and being in a position of needing support from family and friends can be very uncomfortable. After months or years of cancer treatment, families are often no longer in touch with their "normal," or pre-cancer, lives. Lifelong physical changes can also leave children unable to return to the sports and activities they enjoyed before their diagnosis, leaving them in a position of having to rebuild their sense of self.

How to Help

People who are unfamiliar with childhood cancer may assume that ending cancer treatment comes with only positive emotions. They may accidentally dismiss the continuous emotional difficulties that never completely go away. The amount of support that families receive often falls as time goes on after the diagnosis, and in some cases it goes away completely during survivorship. Because of these issues, one of the best ways to help is by simply listening. Every family is different, and it is ok to ask what would be most helpful during the transition from treatment to survivorship. When communities continue to honor the unique journey of survivorship, children not only survive, but thrive.

All content on Cancer Cushion is provided for informational purposes only. Individuals experiencing a mental health emergency should contact their local crisis line or dial 988.