Why is long-term follow-up needed?
Due to the chemotherapy and/or radiotherapy toxicity, people treated for cancer can develop medical problems long after treatment has finished. For children, cancer treatment can interfere at a critical time for growth as their bones, tissues and organs are still developing. Therefore, a long-term follow-up schedule is particularly important for childhood cancer survivors and should continue into adulthood.
The development of specific late effects depends on several factors:
- type of cancer
- location of cancer (treatment area of the body)
- type and dose of treatment (chemotherapy, radiotherapy,...)
- age of the child during treatment
- potential complications that occurred during treatment
The effects can be progressive and irreversible and can include problems relating to growth, development, the heart, lungs, kidneys and fertility. However, many of these problems can be tackled better if they are detected at an early stage.
For more details on research around childhood cancer survivors, you can read "Chronic Health Conditions in Adult Survivors of Childhood Cancer" (In English)
Post treatment: The long-term follow-up plan
After the treatment is finished, the long-term follow-up specialist from your centre will go through the potential late effects in detail and propose a specific long-term follow-up visit schedule, in parallel with the regular cancer follow-up that is required. The long-term follow-up examinations and their frequency will depend on the type of cancer, the treatment received, and if there were any complications. The plan will be tailor made to the specific situation of each patient.
A long-term follow-up plan will usually include information about:
- How often to go for long-term follow-up visits
- Which tests are needed to monitor possible late effects
- If any additional support is required for education or mental health
What to tell your doctor during follow-up visits?
Although it can feel overwhelming and provoke anxiety every time there is an ache somewhere, remember to always talk openly with your doctor about any physical or emotional concerns.
Tips for getting the most from your appointment:
- Note down any questions, signs and symptoms, concerns or other things that you want to mention to your doctor before the appointment.
- Note down any change in medication (or additional supplements) or medical history.
- Ask someone to accompany you for emotional support.
- Be open and honest with your doctor and if needed, ask them to refer you to a psychologist for emotional help.
Follow-up care of survivors should also include secondary and tertiary prevention (e.g., strategies to promote tobacco cessation or avoidance, physical activity, and proper weight management) and management of chronic disease.
Research and collaboration: Improving the quality of survival
Several national and international initiatives, such as PanCare, study survivorship issues and come up with guidelines for long-term follow-up of childhood cancer survivors. BSPHO is represented in these initiatives.
In 2019, BSPHO initiated a project which aims to improve the quality of survival after childhood cancer by monitoring late effects. The expected impact of the project is optimisation of care for long-term survivors. This ensures that each patient receives optimal follow-up care with timely screening for known possible late effects and their early detection. Such optimisation can lead to fewer (severe) late effects and reduced mortality and morbidity in the long term.