How do I take care of my physical health?

What are the long-term side effects of childhood cancer on 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.

HELPFUL APPROACHES 

• 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-effects 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,  gaming, 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 effects 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. 
• Survivors should 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.

READ MORE 

• Children’s Oncology Group. 2023. Long-Term Follow-Up Guidelines for Survivors  of Childhood, Adolescent, and Young Adult Cancers.  
  https://survivorshipguidelines.org/ 
• St Jude Inspire. 2024. Women Who Inspire: Haley Arceneaux.  
  https://www.stjude.org/inspire/series/possibilities/women-who-inspire-hayley-arceneaux.html
• The Children and Young People’s Cancer Association (CCLG). 2024. Survivor  Stories. https://www.cclg.org.uk/about-cancer/living-beyond-cancer/survivor-stories-0
• Cleveland Clinic. (n.d.). Pediatric Cancer Survivor Shares His Story to Help Kids  Fighting Cancer. https://my.clevelandclinic.org/patient-stories/159-pediatric-cancer-survivor-shares-his-story-to-help-kids-fighting-cancer
• MD Anderson Cancer Centre. 2021. Leukemia survivor still grateful for childhood  cancer programs. https://www.mdanderson.org/cancerwise/leukemia-survivor-still-grateful-for-childhood-cancer-programs.h00-159464001.html
• St Jude Children’s Research Hospital. (n.d.). Survivor Stories.  
  https://together.stjude.org/en-us/conditions/cancers/life-after-cancer/survivor-stories.html
   

SURVIVORSHIP OVERVIEW

It is generally accepted that survivors of childhood cancer may face specific issues and  problems that other people do not have to meet.

These can include: 

• Possible long-term medical side effects. These may be due to some of the  treatment protocols that have been used, or there could be an increased risk of  developing other malignancies later in life.  
• Several areas of discrimination that survivors may experience include access to  insurance or medical aid, employment and career choice.  
• Social impacts, including stigma, poor relationships, marriage problems,  infertility, etc. Some of these may be very culturally specific.

However, apart from possible negative effects of having had cancer, there have been  studies that indicate that many survivors have emerged from their illness with a positive  attitude to life and have been strengthened by the experience. 
During a survivor meeting in Dublin, Ireland in 2016, survivors discussed their life-long  challenges regardless of geographical, religious, ethnic, financial and cultural  backgrounds. The global CCI Survivors Network (CCISN) asked medical and  psychosocial professionals and other stakeholders to acknowledge the challenges and  needs of survivors. The plea for help was documented in the Dublin Declaration. “ 

Declaration_of_Dublin_CCISN_v3.pdf

A GUIDE TO SURVIVING CHILDHOOD CANCER. 

“The view from up here” is a guide to surviving childhood cancer. It was written to help  teen and young adult survivors of childhood cancer throughout the survivorship journey.  The National Coalition for Cancer Survivorship (NCCS) included different aspects such  as emotional struggles and spiritual growth, school, relationships, etc. Survivors talk to  survivors.

The View from Up Here Teen & YA survivors.pdf

ARE THERE SURVIVORS GROUPS THAT I CAN JOIN FOR SUPPORT? 

Survivors say: “Don’t tell us what to do.” But rather: “Ask us what we need”. For this  reason, Childhood Cancer International (CCI) inspired survivors from all over the world  to form a Global Survivors Network called SurNet.

In 2024 Childhood Cancer International (CCI) started a Global Survivors Network  called SurNet. The aim of the group is: 

• To share knowledge and resources between survivors, patients, parents, and  health personnel. 
• To create awareness about childhood cancer survivorship. 
• To discuss and find solutions for different realities, global survivorship  challenges and global opportunities. 
• To create a sense of belonging. 
• To create a platform for survivors to inspire each other. 
• To help provide peer support and empowerment. 
• To increase the quality of life and care for those affected by cancer.
• To promote an equitable health care system for all. 

For more information and to join the group, please write to [email protected].