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.
Your child will probably continue to be seen in a follow-up clinic for many years after all the treatment has finished. They may see the same team of doctors and nurses they knew during treatment although they may transition to a late effects service run by staff who treat adults. If your child was treated at a Shared Care Centre they may still go there for some follow-up visits.
As soon as possible after treatment is finished and any scans or tests have been completed. Some children being treated for leukaemia or lymphoma may have their lines removed before treatment finishes. The line or port will be removed under a general anaesthetic, so your child will need to attend hospital as a day case. Having a line removed is less urgent than having a line inserted, so your child may be placed on a waiting list for this operation.
No one likes blood tests but unfortunately they 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 play specialist may be able to work with the child to help them cope with the blood test.
The main purpose of a follow-up visit is so the doctor can give your child a general check up and arrange any tests they think are needed. Your child will be weighed and measured at each visit, to check they are growing normally. Blood counts are checked until they have returned to normal, possibly longer if your child had leukaemia.
Initially these will be to check that there are no signs of the cancer coming back. The frequency of scans, including heart scans, X-rays and other investigations will depend on the treatment your child has had. Your doctor will explain this in more detail. As time passes the visits increasingly focus on making sure that any long-term side effects of the treatment are found and, if necessary, treated. The chance of cancer returning lessens as time passes.
Yes, most children will need to have their childhood immunisations repeated six months after finishing treatment (may be longer following a stem cell transplant). Your child’s consultant will advise you on which immunisations need to be repeated and will write to your child’s GP so this can be arranged.
To begin with, you may find it difficult not to worry every time your child is unwell, even though the most likely cause is a normal childhood illness. This feeling is perfectly natural and will hopefully reduce over time.
In the first few weeks after treatment stops, your child may still be neutropenic, or still have a central line and will need to come to hospital if they have signs of infection. However, once your child has a normal blood count and no line or port, your child’s medical team will advise you whether they want you to contact them or your child’s GP first.
Your child’s immunity will be low for up to six months after treatment. If they previously needed to take extra medicines when they came into contact with chicken pox or measles, they will still need to take these during this period.
This is understandably a common question. Most children won’t have any problems, but there are a few things to look out for:
- many bruises at the same time not caused by normal activity (all children get some bruising),
- repeated headaches/or being sick which is worse first thing in the morning,
- lumps when your child is otherwise well. Small lumps in the neck, called lymph nodes, are very common in children when they have a viral illness, such as a cold or sore throat,
- feeling unwell for a period of time without a known cause.
If you are worried about any symptoms your child has, contact your child’s treatment centre.
If during treatment you were told your child had enough of their own immunity against chickenpox, then there is no need to take any action if contact is made. However, if when your child was on treatment you were advised to report any close contact with anyone with chickenpox or shingles, then this continues to apply for six months* following the completion of treatment. After that time, if your child is in contact with anyone who has chickenpox or shingles there is no need for any action to be taken.
*This period may be longer for children following a stem cell transplant. Please ask your own hospital doctor.
For the first six months* off treatment, if your child is in close contact with a confirmed case of measles, then you should report this to your hospital nurse or doctor so appropriate action can be taken. After that there is no need to worry about any measles contact.
*This period may be longer for children following a stem cell transplant. Please ask your own hospital doctor.
If you want to talk to someone in-between visits to the follow-up clinic, you may be able to talk to your child’s clinical nurse specialist or keyworker. They can advise you or arrange for someone else to contact you. Alternatively, you can contact the ward or clinic where your child was treated.
Generally, your child should be encouraged to return to normal activities as soon as they feel better or are able to. Some children are left with disabilities as a result of their cancer or treatment and may not be able to do all they could before. The professionals supporting you and your child will work with you to make sure that your child can access educational, social and recreational activities as fully as possible.
Yes. Exercise is important for healthy living and, unless there are any obvious reasons why your child cannot be physically active, exercise should be encouraged for at least one hour per day as recommended by experts. Once your child’s central line has been taken out and the wound has healed there is no restriction on swimming.
Some children feel very tired after certain treatments but most will recover within a few months of finishing treatment. When children first finish treatment they often feel tired because they are not as strong as before, they may have lost weight and they are not used to joining in all their usual activities. It takes time to build up their stamina. This is helped by eating a good balanced diet and introducing activities gradually. Your child’s school should help with your child’s reintegration and support them to join in as many activities as possible.
Each child is different but, hopefully, all children are soon able to attend school full time and join in sport.
Following treatment, most children go into puberty quite normally and your child will be examined regularly at follow-up visits to check this. Whether your child’s fertility has been affected will depend on the treatment they received. This will have been discussed when your child was diagnosed. It is often very hard to remember everything that was said at the beginning so please ask the follow-up team again if you can’t remember.
Your child may have been attending school during treatment, but they may have spent days, weeks or even months away from school and friends. The thought of returning to school can be both exciting and daunting. As a parent, it may also be very hard to ‘let go’ and allow your child to leave the safety of home. Your child may also be anxious, and feel as if they are ‘starting all over again’.
Teachers may have already had contact with hospital staff during your child’s treatment and further support can be given in helping your child return to school now they are at the end of treatment. It is important that information is given to the school relating to any medical issues still affecting your child. Your specialist nurse may still be a link to the school if necessary. Remember that most children feel strongly they want to be treated as ‘normal’ in school, so informing the school and your child’s school friends of this will help it to happen.
After treatment, some children may take a little time to adjust and occasionally feel anxious or worried at home and school. They may become more tearful or express their frustrations in antisocial behaviour or temper tantrums. Try not to worry about this, most teachers will understand. In time, by attending school regularly, your child will receive encouragement and support in adjusting to life at school. Maintaining boundaries can help to manage behaviour.
Most children who have had cancer treatment will have no educational issues at all. For some children, intellectual development may be affected by their cancer or their treatment. This may be down to low energy levels and long absences from school. Some children may need additional support such as extra time during exams and regular breaks. Having treatment can sometimes affect memory, learning abilities, and concentration. Informing teachers of the possible problems that may arise from treatment means that where this is a possibility, children can be watched closely and given extra help if needed.
The following can sometimes increase the risk of educational problems:
- your child’s history of learning issues before their cancer diagnosis
- low energy levels and tiredness
- lots of long school absences
- hearing or vision affected by treatment
- physical disabilities from treatment
- treatment for brain and spinal tumours
As your child moves further into the follow-up period, it will be important for teachers to monitor their progress at school, discuss any concerns and recommend if any specific educational testing is required.
If you have any issues or need help and support when your child goes back to school, please ask your child’s keyworker at the hospital.
As children treated for cancer become adults, their care will gradually transfer from paediatric to adult services. There is no single right time for this to happen and a flexible approach is used by most hospitals depending on the time since diagnosis, current health of the patient, and their physical and emotional maturity.
Preparation for moving to adult services should start early around your child's 14th birthday and continues until your child is settled into adult services. This is called transition. It is a planned, coordinated process where your child will be prepared over a number of months or years, given all the information they need and be introduced to their new adult team to make sure there is continuity of care.
Adolescent and adult long-term follow-up care will vary in each cancer centre. If you require any further information on transition, please discuss this with your follow-up team.
You can help the transition process when your child is young by:
- talking to your child to help them gain an understanding of their cancer and its treatment
- explaining the reasons for them coming to the follow-up clinic
- encouraging your child to ask questions and talk directly to the doctor and nurses
They will also be supported by the hospital team to:
- understand their cancer, treatment and follow-up
- gain more independence and start to make their own decisions
- find health care advice