What is a late effect?

A late effect is defined as a chronic or late-occurring medical or psychosocial condition that persists or develops as a consequence of the cancer or its treatment. Late effects may occur any time following treatment and throughout adulthood. 

Survivors of childhood cancer

A survivor is defined as a patient who has survived five years from diagnosis and who has been off treatment for at least three years. Of those who are disease-free at the five year mark, more than 90% will be free of their disease at 15 years and are expected to have a normal life expectancy.

Most survivors are able to function normally within the community. However, studies indicate more than two-thirds of young adult survivors of childhood cancer eventually experience at least one late effect, with some survivors experiencing more. For some, these effects will be very minor. For others they may be serious or life-threatening.

Late effects can occur in any organ or system of the body and vary from person to person. They can be influenced by the original cancer diagnosis, age at diagnosis, gender, treatment, family history, aging process and overall health. Some late effects are clearly visible, such as an underdeveloped muscle following radiation, while others will only show up with testing. An individual child’s risk of late effects can be predicted to a certain extent, based on the cancer they had and the treatment they received.  

It is important for survivors of childhood cancer to have regular medical care after they have finished treatment. Most survivors need follow-up visits every year, later changing to every second year. This allows any late effects to be detected early or even prevented, leading to better outcomes in the long-term.  

Types of late effects

Psychological and social issues

Survivors and their families may experience a range of new feelings as the focus shifts from diagnosis, to survival, to late effects. These feelings may include stress around testing for recurrent cancers or late effects, or even anxiety about coming back to the Hospital to see their doctors. Although many survivors cope well, some may experience intense anxiety or even post-traumatic stress disorder (PTSD). If you have concerns about yourself or your child, it is best to talk to your health-care provider so the best possible treatment can be offered. 

Other psychosocial issues experienced by survivors may include those related to school performance, occupational training, employment opportunities, or relationships. Some survivors find they have difficulty obtaining insurance, or gaining apprenticeships, scholarships or acceptance at universities. If your child experiences any difficulties with education, jobs, employment or pensions, it is very important to tell your treating team. The Hospital’s long-care follow-up team will act as advocates for your child to ensure they do not suffer discrimination as a result of being a survivor of cancer. The team is available to help with any concerns you have and will offer whatever support or assistance they can to help address the issues at hand.