Study Highlights Prevalence of Pain After Childhood Cancer

Chronic pain is a problem for many childhood cancer survivors. But until recently, we did not know how common it was. My colleagues and I conducted a research study to find out.

Our study, published in the journal Pain, was the first to examine how many childhood cancer survivors live with chronic pain. This is pain that lasts months or years after treatment is over. We learned that about 4 in 10 (41%) adult survivors of childhood cancer reported that they had chronic pain.

Our results suggest that childhood cancer survivors experience more pain than people who have not had cancer. About 2 in 10 (20%) people in the general population report chronic pain.

How chronic pain can affect your life

Chronic pain not only affects your body but many parts of your life. Pain can make it harder to do daily activities like working, exercising, or spending time with loved ones. It can also affect your mood, causing feelings of frustration, sadness, or helplessness.

Some survivors feel isolated because they think others do not understand what they are going through, but it is important to know that you are not alone. Chronic pain is a real condition, and there are proven ways to manage it and improve your quality of life.

Health care providers use the biopsychosocial model of pain when diagnosing and treating pain. It helps us understand how pain affects the whole person. The model looks at 3 main factors that contribute to pain:

• Biological
• Psychological
• Social

The biological part of the model considers physical causes of pain, such as inflammation or nerve damage. Several psychological factors can also impact pain, including stress, thoughts, and emotions (anxiety, sadness).

Social factors such as support from family and friends, communication with health care providers, and cultural backgrounds can also impact how we experience pain.  

Causes of chronic pain in childhood cancer survivors

Our study found that cancer treatment, which can be painful at times, may lead to chronic pain later. For example, some chemotherapy, radiation therapy, surgery, and repeated painful procedures such as blood tests may lead to chronic pain down the road. 

Previous studies have shown that pain that is not managed well in children can lead to chronic pain that lasts long after a painful event. It is estimated that kids who do not have cancer have about 6 painful procedures or events a day when at the hospital.

Children in cancer treatment probably have even more painful episodes each day. It is also likely that their pain is not always well managed.

My colleagues and I have proposed a model that shows possible pathways to pain in childhood cancer survivors. For example, we know that children’s pain memories predict the pain they experience several months later. So, it is possible that memories of pain during cancer lead to pain that continues after treatment has ended.

Chronic pain may also be caused by treatment-related chronic health conditions that develop later, such as lung, digestive, and neurological problems in survivors. 

Our study also found that many survivors with chronic pain have raised levels of depression, anxiety, and fear of cancer recurrence. 

Gaining a better understanding of pain

Pain is not like other symptoms or conditions we study and treat. A blood test or scan cannot show if pain is happening or how strong it is.

We are continuing with studies that will help us answer key questions about chronic pain among survivors. For example, recent Childhood Cancer Survivor Study findings showed that how well survivors cope with uncertainty may also play a role in chronic pain.

We want to learn more about why some survivors develop chronic pain and others do not. We hope that our data will help address gaps in chronic pain and survivorship research. 

Steps to manage chronic pain

Each person experiences pain differently. So, pain management methods vary from person to person. They may involve more than one type of therapy. There is no “one size fits all” solution.

The best way to manage pain is an approach that combines different methods to address it. It can include medicine, physical therapy, mental health support, and lifestyle changes.

These strategies include:

• Cognitive-behavioral therapy
• Relaxation
• Self-hypnosis
• Mindfulness
• Deep breathing
• Yoga
• Massage
• Heat

The overall goal of pain management is to reduce pain and improve daily function and quality of life.  

How to find care for pain management

If you have chronic pain, talk to your primary care provider. Be clear about your symptoms and needs. Your provider may not always ask you about your pain.

Pain sometimes gets pushed to the bottom of the priority list, even when it impacts your life the most. Chronic pain is sometimes an invisible problem that is not always obvious to a physician. If you have pain, bring it up.

Your primary care provider can help you put together a pain management plan and a team of providers that can help you meet your specific pain management and well-being goals.