Long-term side-effects of childhood cancer survivors

Long-term side effects in childhood cancer survivors vary widely depending on the type of cancer, the treatments used (chemotherapy, radiation, surgery, bone marrow transplant), and the child’s age at diagnosis. These side effects can appear months, years, or even decades later, and they’re often grouped into physical, cognitive, emotional and social impacts. 

Physical long-term side effects might be around growth and development issues, organ damage, second cancers, loss or changes of hearing and vision, infertility, poor body image and increased susceptibility to infections, especially if the spleen has been removed or the immune system is suppressed.

Survivors could also experience cognitive and learning side effects such as problems with memory, attention and processing speed or difficulty with planning, multi-tasking or problem solving. Patients that have brain tumours or cranial radiation, could develop learning difficulties. Poor school performance might be due to missed schooling during treatment or treatment-related fatigue. 

Emotional and social side effects could include anxiety, depression or post-traumatic stress disorders (PTSD), poor body image and psychological issues. The lack of mental  wellness could be related to health risks such as chronic fatigue, reduced physical fitness or endurance, weight changes or long-term medication.

Based on our experience, we identified a series of helpful approaches in handling late effects:

A childhood cancer survivor is not defined by their diagnosis or limitations but as a person who has overcome challenges during and now after treatment and is adapting. Focus on the incredible strength you’ve shown adapting to these challenges. 

Recognise triggers for e.g. medical smells, anniversaries, etc. and seek help when and if needed. 

Cognitive late side effects may include memory difficulties, processing speed and focus. Allow yourself extra time to process information, ask for written instructions or record them on your phone and prioritise tasks. 

Physical late side effects may include fatigue, neuropathy (nerve damage as a side-effect of chemotherapy) and reduced endurance. Listen to your body and do shorter physical exercises and take rest breaks if necessary.

Emotional late side effects may include anxiety, PTSD, poor body image or depression. Seek professional help, counselling and peer support.  

Your identity is not ‘cancer’. Invest in interests that build your self-worth. Art, leadership, advocacy, or mentoring other survivors can all help build self-worth. For those who are sport orientated, certain sport modifications like a bigger ball or a smaller field, can enable one to still participate and be proud of one’s sporting achievements.

Avoid toxic positivity. This is the act of avoiding, suppressing or rejecting negative emotions or experiences. Long term side effects of this can prevent a cancer survivor from processing their emotions and overcoming their distress and in effect can erase their experiences instead of supporting survivors through them.

If possible, connect with other survivors, support groups for survivors or online survivor communities such as SurNet to help reduce isolation.

Try to build independence and life-skills, particularly if treatment caused over-protection or schooling disruption. Set goals, follow self-care routines, seek career guidance and navigate challenges to stand on your own two feet.

Celebrate progress and not comparison. Your path is your own and your progress and achievements are different from others.

Below are listed a set of guidelines to understand the importance of regular follow-up, and also stories from survivors around the world:

1) Children’s Oncology Group. 2023. Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers.

2) The Children and Young People’s Cancer Association (CCLG). 2024. Survivor Stories. 

3) Cleveland Clinic. (n.d.). Pediatric Cancer Survivor Shares His Story to Help Kids Fighting Cancer.