Sometimes, problems related to cancer treatment that occur or persist after treatment is finished are known as late effects. This is why your child will be continually monitored and assessed to ensure that if such problems occur, then they will receive the right treatment and support.
When treatment finishes
When your child finishes treatment, they will be seen frequently in clinic. How often will depend on the needs of your child, but it is usually every 4-6 weeks during the first year. At the very beginning, they may still be seen every 1-2 weeks. As time goes by, the time between visits usually increases and once five years have passed, your child may only need to be seen once a year or even less.
You should receive from your hospital team:
- A treatment summary which outlines all of the different treatments your child received including the names of any chemotherapy drugs used, surgical procedures undertaken and radiotherapy received.
- A follow-up care plan, which should be shared with your GP and shared care consultant, detailing what follow-up visits will be required and whether extra support is needed. This is reviewed and updated regularly.
Your child’s line or port will be removed as soon as possible after treatment has finished and any scans or tests have been completed. Some children treated for leukaemia or lymphoma may have their lines removed before treatment finishes.
Having a line removed is less urgent than having a line inserted, so your child may be placed on a waiting list for this procedure.
Blood tests may still be necessary once the line is out. This will either be with a thumb prick or a needle. Some children are understandably upset at the thought of this. If it becomes an issue, a health play specialist may be able to work with your child to help them cope better with the blood test.
Follow-up care
At the start, the main focus of follow-up care is on making sure there are no signs of the cancer coming back which is why it is so important to attend follow-up clinics. Your child will be weighed and measured at each visit to check they are growing normally. Blood counts are checked until they return to normal, possibly longer if your child had leukaemia.
Your child may need to be monitored with specific tests and procedures which could include blood tests, scans and other measurements. As well as health checks, follow-up appointments allow children to develop a better understanding of their illness, and help them to take ownership of their health as they become adults.
Your child may also be on an open access pathway where routine appointments are not needed. But you will always have access to the follow-up team for advice at any time.
At a point along this pathway, your child's care will be transferred to the 'late effects' multidisciplinary team (MDT) which consists of a team of specialists trained to deal with longer terms issues that can arise following cancer treatment.
Who will look after my child?
The team will have core members consisting of:
- a consultant paediatric oncologist specialising in the late effects of treatment
- a specialist late effects nurse
- an endocrinologist (hormones specialist)
- a team coordinator.
In addition, the late effects team should have access to allied health professionals, psychological services, fertility specialists and an adult oncologist to support patients as and when required.
What are the different types of follow-up care?
Your child will be offered different types of follow-up care which is tailored to individual level of need and depending on previous treatment and current state of physical and psychosocial wellbeing. These may include:
- consultant-led care for patients with more complex health needs
- nurse-led care with a specialist nurse trained to provide follow-up care either face to face or over the telephone
- supported self-management where parents and patients are given the education and information needed to manage the child's health with the support of of their GP and the reassurance of being able to re-access the care of the Late Effects team if needed.