What happens at the end of treatment?

When your child first finishes treatment they will be seen frequently in clinic. How often, varies between treatment centres but 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 length between visits usually increases to every three months in the second year, until by the time five years have passed your child may only need to be seen once a year.

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.

When can the line/port come out?

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.

What happens if a blood test is needed when the line is out?

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.

What happens at follow-up visits?

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.

Will more immunisations be needed?

Yes, most children will need to have their baby immunisations repeated six months after finishing treatment. This is especially important if they had high dose therapy or a donor stem cell transplant.

What do I do if my child has a temperature/is unwell?

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 is perfectly natural and will hopefully reduce over time.

In the first few weeks after treatment stops, your child may still be neutropaenic, 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, it is usually best to see your child’s GP first. They can decide if you need to go to the hospital.

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.

What should I look out for?

This is understandably a common question. Most children won’t have any problems, but there are a few potential things to look out for:

  • many bruises at the same time that couldn’t have been caused by normal activity (all children get some bruising)
  • repeated headaches/vomiting that are 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.

If you are worried about any symptoms your child has, contact your child’s treatment centre.

Who can I contact if I am worried?

If you want to talk to someone in-between visits to the follow-up clinic, you may be able to talk to the Macmillan/Young Lives vs Cancer or another specialist nurse who you had contact with during treatment. 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.

Is there anything my child can’t do?

A few children are left with disabilities as a result of their cancer or treatment and may not be able to do all they could before, but generally your child should be encouraged to return to normal activities, as soon as they feel or are able to. If your child has been left with a disability, returning to life as before can be very difficult.

Why does my child feel tired?

Some children feel very tired after certain treatments but the majority 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 assist the 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.

What about puberty and fertility?

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 ask the doctor again if you can’t remember.

Is follow-up forever?

This depends on a number of things, including the treatment your child had. Follow-up often goes on for many years due to effects being long-term, or presenting some time down the line. It may be necessary to have heart scans or occasional blood tests. Details of some of the tests that may be necessary to check on any long-term side effects.

This information was written by the Children’s Cancer and Leukaemia Group (CCLG)