After treatment for children’s cancer
What happens after treatment?
Hickman line / port
If your child still has a Hickman line / port, you will be sent an appointment for them to go into hospital to have it removed. This will happen under general anaesthetic.
While the line / port is in place you will still need to care for it and bring your child to hospital if they have a high temperature or have any signs of infection.
You may have to continue with some of your child’s medication until your child is reviewed at their clinic appointment. For example, septrin or anti-fungal medications. The consultant will discuss the medications and the plan for completion of these during this appointment.
Your child’s immune system may still be low for a few weeks after treatment, so take your hospital’s advice about preventing infection.
The hospital will give you an end-of-treatment summary. This lists all the treatments your child has received, including:
- Chemotherapy drugs
- Surgical procedures
Keep this end-of-treatment summary somewhere safe as in the future your child may need to know the details of their treatment. For example, if they are having medical treatments or as part of a health check when starting a new job.
A discharge summary is shared with your GP detailing treatment received, follow-up care and whether extra support is needed. This is updated if further follow-up treatment is needed.
Your child will have regular follow-up appointments. It is important to go to the follow-up appointments. The consultant can monitor your child’s progress and check for any signs of the cancer coming back and help with side-effects or other problems. They also give you the chance to:
- Discuss any problems your child may be having.
- Ask any questions that may have slipped your mind while your child was having treatment.
- Discuss your child’s latest test results and plan to meet your child’s needs until the next appointment.
The first follow-up appointment is often 3 months after treatment, but your consultant may ask you to return sooner. Your child will be weighed and have their height measured at each visit. They may also have tests such as blood tests and scans.
The outpatient appointment takes place in The Haematology Oncology Out-Patient Service (HOOPS) and is located on the 3rd floor of the medical tower. The interval between clinic visits will gradually become longer.
Ask your consultant if your child needs any vaccinations and make sure they get them. For example, some treatments can mean your child loses their immunity and they may need to have their childhood vaccines again. Your GP can give any vaccinations your child needs. Your child’s consultant will write to your child’s GP to arrange this.
Even though you (and your child) may want to put their illness behind you, it’s important to keep going to follow-up appointments. These can check for any side-effects that may develop some time after treatment (late effects). If late effects happen, it's good to identify them as early as possible, so that treatment can start right away. Your child can also get support at their follow-up appointments for any emotional or practical difficulties they may be facing.
Follow-up for older teens and young adults
At some stage your child will be transitioned to adult services for long-term follow up and to treat any side effects that may arise following cancer treatment. The medical team in the hospital will help navigate this transition.
You or your child may feel anxious going back for follow-up appointments. Returning to the hospital may remind you of difficult times or you may be worried about test results. As it’s rare for children’s cancers to return, for most people the appointments are reassuring and you should feel better afterwards.
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 clinical nurse specialist (CNS) who you had contact with during treatment. They can advise you or arrange for someone else to contact you.
You can also call our Support Line on 1800 200 700 and ask to talk to our Children’s Cancer Nurse.
What do I do if my child is unwell or has a temperature?
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 (low neutrophil white blood cell count), or still have a central line and will need to go 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 6 months after treatment.
If they previously needed to take extra medicines when they came into contact with chicken pox or measles, they may still need to take these during this period. Talk to your medical team about this.
Is there anything my child shouldn't do?
Generally, your child should be encouraged to return to normal activities as soon as they feel or are able to. 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. If your child has been left with a disability, returning to life as before can be difficult. You will be supported by your child’s healthcare team in this case.
Why does my child feel tired?
Some children feel very tired 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.
The school should help your child to settle back in and support them to join in as many activities as possible. Each child is different, but in time most children get back to school full time and are able to join in with sports and other activities.
What about puberty?
Following treatment, most children go into puberty quite normally. 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 they were diagnosed. It is often very hard to remember everything that was said at the beginning. Ask the medical team again if you can’t remember.
Will they get back to their 'normal' weight?
Most children who lose weight will begin to put on weight once treatment is finished.
If your child has gained weight as a side-effect of taking steroids, they should lose weight after they stop taking them.
It's good to give your child a healthy, balanced diet - your GP can advise you about this - and encourage them to be as active as they can.
The doctor will check your child's weight at their follow-up visits, but you can contact your GP if you're worried about their weight between appointments. You GP or hospital team can refer your child for extra help if they have any difficulties with their weight.
A healthy lifestyle can have a positive effect on your child’s health for many years to come such as:
- Helping to heal tissues and organs damaged by the cancer and treatment
- Building up your child’s strength and stamina
- Reducing the risk of certain types of adult cancers and other diseases later in life
- Reducing feelings of stress and increasing feelings of wellbeing
What is a healthy lifestyle?
In general, a healthy lifestyle includes:
Eating a well-balanced diet: A well balanced diet is one that has all the foods your child needs to stay healthy.
Exercising regularly: Being active is good for children's bodies and minds. It can also help with the fatigue (tiredness) that can happen after cancer. You can ask your doctor for advice if you have any questions about the type and amount of exercise that might be suitable for your child.
Sun protection: Make sure they're always protected using cover-up clothing, sunglasses and a high-factor (minimum SPF30) sunscreen.
Not smoking and avoiding alcohol: As your child goes through adolescence and becomes more independent, talk openly about risky behaviours such as smoking, drinking alcohol and taking drugs.
Feelings after treatment
It can take some time for you and your child to adjust emotionally to life after cancer treatment. You may have been focused on getting through, and find that feelings such as grief, anger and fear only come to the surface once treatment is over, sometimes weeks or months later.
Feelings you may have include:
Fear of cancer coming back and worrying about every small symptom
Coping with a cancer diagnosis is one of the most traumatic things a parent or child can go through. It’s natural to feel anxious about this happening again. You may find it difficult not to worry every time your child is unwell. This is perfectly normal. Usually people find their anxiety reduces as time passes. It also may help to know that:
- Most childhood cancers never come back
- The longer your child stays cancer free the less likely it is that cancer will come back again
- Many children have been successfully treated a second time
Going to all follow-up appointments will help to reassure you and give you a chance to talk about any worries. If you’re worried about any symptoms or health problems between appointments, get in touch with your child's GP or the hospital team.
If anxiety or worry is getting the better of you or you have questions about signs of cancer coming back, tell your medical team or GP. You can also talk to our cancer nurses. They can listen, support you and connect you with services such as local cancer support centres and free counselling. Call our Support Line on Freephone 1800 200 700 or visit a Daffodil Centre.
Loneliness without the company and support of your child's medical team and of other parents and children who understand what you are going through
Regularly talking to doctors and nurses can be very reassuring. Talking to other parents who also have a sick child can also be a huge support.
It can help to keep up contact with your support systems when you go home. During treatment, mixing with children who are going through something similar can be a source of comfort and help your child to feel ‘normal’. Many people feel at a bit of a loss when they return home.
Your hospital team will still support you, and there are ways to stay in touch with the people you and your child met during treatment, such as Facebook and Whatsapp groups and play dates. You will probably find you feel better as time passes and you and your child adjust to everyday life.
We can put you in touch with a parent volunteer who has had a child with cancer and who understands what you’re going through. Call our Support Line or visit a Daffodil Centre for details.
Difficulty in getting back to normal
Adjusting to life after cancer treatment can be hard at first. Other people might not understand what you or your child has been through. You or they may feel guilty that you are not as happy as people expect or feel isolated if you find it hard to get back to everyday activities. It may help to stay in touch with your child's medical team and the people you met during treatment, who understand what you’re going through. Trying to explain to friends and family that you are still adjusting will help them to understand your feelings and should reduce the pressure on you and your child.
Getting back to everyday life
For some families it can take a little time to adjust to a new normal after a life focused on cancer and treatment. Things may not be exactly the same as they were before, but it’s good for children to get back to their everyday activities such as school, sports and socialising, as much as they are able to.
Encourage your child to do as much as they are able
Your child may still feel tired in the weeks and months after treatment, and their immune system may be low for a time. Some children may have side-effects that affect their ability to do the activities they did before. Your hospital team will advise you on any precautions you need to take, but in general it’s good for your child to get back to their normal activities at a pace that suits them.
Live a healthy lifestyle
A balanced diet, plenty of rest and taking some exercise can help your child to recover and improve their energy levels and strength.
Be open about feelings
Try to talk to your child about how they’re feeling. Remember to focus your full attention on them and give them space to speak. Knowing about any worries or problems your child has will give you the chance to reassure them and get support for them, if they need it. Call our Support Line and ask to talk to our Children’s Cancer Nurse, if you need help with this.
Reintroduce routines and discipline
During treatment the normal rules and routines may have been relaxed. After treatment it make take a bit of effort to reintroduce them. Your child may resist a bit, depending on their age – they may miss all the fuss and attention, they may be ‘acting out’ if they are struggling with their emotions or it may just take them a bit of time to adjust. However, it can bring a sense of security and comfort to have routines and boundaries as you get back to everyday life. Don’t be afraid to establish bedtime and homework routines, ask older children to do chores or to discipline them in the same way as you would have done before their illness.
Stay in touch with teachers
It is good for your child to get back to school, but they may be anxious about going back: They may feel they have fallen behind with their work or worry about seeing their friends again, especially if they look different – for example if they’ve lost their hair or lost or gained weight. They also may be very tired or find it hard to concentrate. Talk to the school about any difficulties your child may have so that you can plan to overcome them. For example, your child may be able to go part time for a while or to get extra support with their schoolwork.
Peer to peer support for parents of children with cancer
Would you like to speak to a trained parent volunteer who really knows what you are going through, and understands what it is like to have a child with cancer?
To be referred to one of our trained parent volunteers please call the Irish Cancer Society Support Line on Freephone 1800 200 700 or by email.
For more information
1800 200 700