Introduction 

The completion of cancer treatment is an event that can contain a spectrum of complex emotions. While it is often assumed to be a time of happiness and celebration, many survivors find that entering into the survivorship stage following treatment for a pediatric cancer diagnosis brings on a unique set of challenges, emotions, and anxieties. These feelings and anxieties require attention, especially in the early stages of survivorship which is a time for reflection, processing, and healing. 

Understanding Childhood Survivorship 

Pediatric cancer treatments have taken enormous strides in the past couple of years. With these advancements, the amount of pediatric cancer survivors continues to rise. In fact, within the last 10 years, the survival rate of children living 5+ years post-treatment has increased from 80% to 85%, and research is only continuing to improve these numbers. Research studying the quality of life of survivors has also increased, and with this, the awareness of the impact that survivorship has on mental health has as well.

Survivorship anxiety is incredibly common, and if a child has undergone cancer treatment, they have a significantly higher risk of experiencing clinically elevated anxiety and depression scores than their peers. After treatment, new routines and life changes along with the leftover stress that was experienced during treatment can cause significant amounts of anxiety.

The American Psychological Association defines anxiety as “an emotion characterized by feelings of tension, worried thoughts, and physical changes like increased blood pressure.” 

Individuals with anxiety can have disturbing thoughts that come on suddenly and often can interfere with daily life. Worry and stress are common during a severe illness. Many children are resilient and able to cope during and after treatment, but these intense feelings can persist for some. As the survivor enters adulthood, other external stressors and fears may arise. While a certain level of anxiety is normal and expected, when the feelings get out of control and consistently affect daily life, further intervention is needed.

Factors Contributing to Anxiety in Adult Survivors

In the months and years following treatment, there are many ways for anxiety to appear in both child and adult survivors. Survivors may notice their anxiety increase and decrease during different times in their life depending on various challenges and changes that occur.

Depending on the age at diagnosis, children may have growth and development milestones to catch up on, changes in relationships and friendships to navigate, and emotions to process that they might not fully be able to name or understand. Medical trauma, including painful procedures, scary and intense situations, as well as the discomfort from not feeling well may be stressors that need to be processed. Older children and their parents often have a fear of recurrence. While they may feel relieved to not have so many doctors appointments and treatments, not being assessed and monitored as frequently often causes anxiety that a potential relapse may not be caught right away. ”Scanxiety”, or the distress and anxiety occurring before, during, and after cancer-related imaging scans is also common. Survivor’s Guilt, or the feelings of sadness and guilt that one survived their cancer while a friend did not can feel extremely difficult.

As the survivor enters adulthood, a new level of complex challenges and emotions may arise. Managing finances, whether it be medical bills or the inability to work a full-time job due to the late effects of treatment can add stress. Other late effects and conditions caused by treatment, such as chronic pain, fatigue, or cognitive impairment can have an impact as well. A survivor may struggle with body image insecurities as treatment often causes physical changes outside of their control. Their reproductive health may cause additional stress as they may struggle to have kids naturally for a variety of reasons, especially if sperm or egg preservation was not available prior to treatment.

Recognizing the Signs of Anxiety

Each child experiences anxiety in different ways. Often it is dependent on the age and maturity level of the child. Young children may find it difficult to express or identify their feelings. Older kids or teenagers may not want to talk about the issues they are facing. 

As a parent, you know your child better than anybody else, so it’s essential to reach out to a qualified mental health provider if you believe your child is suffering from an anxiety disorder after treatment. St. Jude’s provides excellent information for parents of cancer survivors dealing with anxiety. 

As the survivor enters adulthood, it is important for them to be self-aware in order to collaborate with their medical team and report any new signs of anxiety or difficult emotions that arise.  

Some of the signs and symptoms that may be present in both children and adults may include: 

• Feeling worried or scared
• Irritability or restlessness
• Trouble concentrating
• Problems sleeping
• Loss of appetite
• Headaches, muscle aches, nausea, and abdominal distress
• A strong sense of panic or impending danger

If the anxiety is disrupting the survivor’s everyday life it is important to report this to their healthcare provider as this is a strong indicator that they need professional help. 

Coping Strategies and Support  

Utilizing healthy coping strategies and seeking out the support of others can help ease survivorship anxiety.  

• Identifying the feelings and naming the emotions is the first step in processing and working through this complex and unique experience.  

• Talking with someone, such as a close friend, family, religious leader, or spiritual adviser, can also help survivors process their feelings and potentially offer some comfort and advice.  

• Oftentimes, it is necessary to seek professional support and counseling with a mental health specialist to learn coping strategies and tools to help manage difficult emotions and gain a professional perspective on the survivor’s experience. This support may also include antianxiety or antidepressant medication. Many fear the prescription will be permanent, but this is often not the case.  Medication is usually prescribed for a specific amount of time until their anxiety feels more manageable.  

• Finding healthy outlets–such as journaling, music, and art–to help process and work through feelings can be very effective.  

• Establishing new lifestyle changes and habits–such as exercising, cooking and eating healthy meals, and meditation–can also be helpful ways to reduce stress and anxiety.  

Finally, connecting with other Survivorship Communities can be invaluable. Talking with individuals who have gone through similar experiences can be extremely helpful in processing emotions, as they can often understand things on a deeper level, and it may feel safer to express difficult emotions that are hard to share with others.  

• Your treatment center will have lists and resources for survivorship communities and may also provide specific survivorship screening and support.  

• Support Groups, offered both online and in person, are available for both survivors and for their families. Find a list of support groups here and here.  

• Survivorship Camps can offer an incredibly unique and powerful experience for connection, rejuvenation, and healing. A variety of camps, such as COCAI and  First Descents are available and many offer a specific focus on survivors themselves, parents, and siblings. Find a list of camps here and here. 

Knowing about additional resources that offer survivorship support can also be empowering. The Children’s Oncology Group recommends this book for insight and education regarding survivorship. These self guided courses on childhood cancer survivorship may also be helpful. Reach out to us at Here to Serve for additional resources and emotional support.

Conclusion

Survivorship Anxiety is a very real and common experience. As awareness of these emotions continues to increase, the movement toward routine screening of survivors’ distress and coping is becoming more and more common. Life after treatment will contain its challenges, but if anxiety is getting in the way of the survivor’s ability to enjoy life, it is important to contact their healthcare provider and seek out these resources. 

If you are thinking about hurting yourself or need immediate crisis support, call or text the 988 Suicide & Crisis Lifeline at 988 or chat at 988lifeline.org. 

Here to Serve 

At Here to Serve, our unwavering mission is to support families with children battling cancer throughout every step of their challenging journey. As the only national organization providing comprehensive in-home support and services to families with children navigating cancer, we intimately understand the value of a strong support system. Our dedicated family care coordinators provide invaluable resources directly to families and caregivers, including access to physical, financial, and emotional options, so that you have the tools and support to face this unexpected challenge. If you or someone you know is dealing with a recent cancer diagnosis, don’t hesitate to reach out to us for tailored care and support. We are committed to building a future where all families with children going through cancer have access to the support and resources they need to focus on what matters most during this journey – caring for their loved ones. 

About the Author 

Danielle Loumagne is a Registered Nurse and Bone Marrow Transplant Certified Nurse who has worked in Pediatric Hematology/Oncology for over 13 years. As a Health Content Writer, she utilizes her experience to share deeper insights regarding what goes on within the hospital setting, and strives to help her readers at Here to Serve feel more prepared and educated for their treatment and care.