As a survivor of childhood cancer it is important you are offered the opportunity to review your previous treatment in a specialist long-term follow-up clinic. You may know a lot about your illness or you may know very little.
Long-term follow-up clinics provide you with an opportunity to learn about and plan, together with your follow-up team, the follow up you will require. Follow up at this stage in your journey aims to detect and manage any problems caused by your cancer or its treatment to ensure you have the best possible quality of life.
Approximately 60% of survivors will have a problem or ‘late effect’ related to their treatment. For some this will be very minor, for others it may be more major. The risk of a problem occurring later on is different for everyone, it depends on:
- your type of cancer;
- the age when you were treated;
- the treatment you received.
We encourage you to ask your key worker or follow-up team about anything that they have not covered. You may have been treated for a tumour or condition that was not cancerous but because of the treatment you had this information still applies to you. If this is the case, your doctor will explain why.
Your long-term follow-up team should provide you with an end of treatment summary. Keep this somewhere safe for easy access if you ever need to know the details of your treatment.
For example, you may need it for an antenatal visit or pre-employment health check when starting a new job. Long-term follow up is not just to support you with medical problems. Some survivors talk about experiencing job discrimination or difficulties obtaining health or travel insurance. This is a good reason for you to know about your illness, its treatment and potential effects later in life. In this way you can talk to people about your cancer.
It is important to remember that although your cancer experience will always be a part of you, it doesn't need to define the person you are.
What to expect in follow-up care
Progress in follow-up support services