Most children will be cured and live long, fulfilled lives after their cancer treatment ends. However, it might take some time for you, your child and other members of your family to readjust and gain confidence in the future. This is normal, as you have been through a unique and demanding experience. There are many emotions to deal with, and you will have questions and reservations about what the future looks like.
It’s important to realise that ‘normal’ life will change in some ways. It might not be possible for things to go back to exactly the way they were before your child was diagnosed. This will depend on the type of cancer and treatment your child had.
As your child is a cancer survivor, doctors will need to monitor your child’s health and do follow up testing, which may include scans for a long time. These things will form a ‘new normal’ for you and your family.
This section will help you understand what ‘a new normal’ may look like, and how you can deal with it.
The Living with children’s cancer section has information about dealing with emotions for everyone involved. Some of this information is also useful after treatment ends.
After treatment
The end of your child's cancer treatment is likely to be a big relief. However, you will probably have many questions about what will happen next, including:
- When can my child go back to school/preschool/day care?
- Do we need to come back for check-ups, and how often?
- Will my child develop normally?
- Should my child be avoiding certain activities?
- What should I look out for?
- What if my child gets a fever?
- Can my child be vaccinated?
- Will the cancer come back?
- Will my child get another cancer?
Your child’s oncologist can answer most of these questions. The answers will depend on how old your child is, and what type of cancer and treatments they had.
It’s important that your regular doctor (GP) or another doctor also knows everything about your child’s diagnosis and treatment. This will help them assess your child during any future visits.
Most children will be able to resume normal activities. In a few cases, there will be limitations because of treatments, such as surgery. Your oncologist will be able to advise you further.
Follow-up tests or scans
Some tests will need to continue even when treatment ends. For example, your child will continue to need follow-up tests, which might include blood tests (see How is cancer diagnosed?) or scans to make sure your child has recovered fully, to monitor for any late effects of therapy and for any evidence of cancer recurrence.
Your doctor will let you know which follow-up tests or scans your child will need, and how often. Some of the tests or scans will be the same as the tests or scans that were used to first diagnose the cancer (see How is cancer diagnosed?). Some of the tests or scans will need to be continued for 2 years or longer after treatment has stopped.
Other visits to the doctor
If you notice any of the symptoms that your child had when they were diagnosed with cancer, contact your doctor. But remember, many symptoms are not specific to cancer. Having some of these symptoms does not mean that your child has cancer again. Remember that most children will be cured of cancer.
Your oncologist will advise you at what point after treatment finishes, your child can see the family doctor if unwell. If your child develops a fever after treatment has finished and they have recovered completely (this may take some months), contact your regular doctor (GP). Your GP can help decide how serious the fever might be and what might be causing it.
Your child may need to be revaccinated (as ‘booster shots’) after cancer treatment. Your oncologist will let you know which vaccinations your child should get and when.
If you have any questions about after-treatment care, make sure you ask your oncologist. They will be able to provide further details and answer your specific questions.
Emotional wellbeing
Cancer can affect the mental health and emotional wellbeing of your whole family. Many families find it a huge challenge dealing with their emotions when a child is diagnosed with cancer.
There are many support groups that can help you and your family throughout the cancer journey. If you need help, advice or support at any time, don’t hesitate to contact a support group, the cancer clinic or a health professional. You are not alone, and help is always available when you need it.
Each child and family is different and will respond to the situation differently. This also means that there is no ‘right’ or ‘wrong’ way to deal with your emotions. You should do whatever works for you and your family.
For you
As a parent or carer, you will, of course, feel happy and relieved once the treatment ends. But you may also feel afraid, anxious and stressed. These are all completely normal and understandable. Many parents feel this way when their child completes treatment.
You and your child may have formed special bonds with some of the doctors and other staff you have met during your cancer journey. You and your child may miss these relationships. However, many support groups offer new relationships that will help you deal with these different emotions.
For your child who had cancer
Many cancer survivors are changed by their experience. Children are no different. They may view life differently, and perhaps value it more than other children.
Your child might have some developmental delays due to the cancer diagnosis and treatment. These delays may be physical, social or emotional. As a result, your child may need some extra support to help them catch up to other children.
Your child will probably be relieved that the treatments are over. However, they might miss the special attention they received during their care, and it may take some getting used to, going back to a more ‘normal’ life.
Babies and toddlers will probably not remember their experience. Preschool children may be confused and react by acting younger than they are. Be patient and set reasonable and sensitive limits during this transition period.
Older children may be worried about going back to school and facing teachers, friends and other children. There may be some physical reminders of their ordeal, such as hair loss or weight changes. Other children at school may not understand cancer and may be afraid of ‘catching’ cancer or may make comments that are inappropriate or hurtful. It’s also a possibility that your child may have fallen behind in their education. In order to ensure a smooth transition back to school, it’s important to talk about support options with both your child’s doctor and the school.
By talking to teachers at the school, you can help them understand what your child has gone through. This is important so that the teachers can help your child settle back in and adjust, and help other children understand what has happened.
With time, you will adjust to a new ‘normal’.
For your other children
If you have other children, they might have mixed emotions as well. They will probably be excited about their life going back to normal. However, the family balance might be disrupted as well.
Cancer treatments can take many months or years. This is long enough for the family to have adjusted to this enforced way of life and to settle into new routines. This may be the case for your other children. Once your child’s treatment is over, the child will be around more often than they were during active treatment. This may upset the new routines that your other children have developed during this period. In addition, brothers and sisters might not understand that their sibling has also changed because of the experience, and they will require support and understanding. Counselling may also play a role in helping them to adjust.
For the whole family
As discussed in Living with children’s cancer, going through cancer treatment can affect the mental health of your whole family and friends. Some feelings may stay after the treatment ends, and include:
- depression
- stress
- worthlessness
- worry
- anxiety
- sleeplessness
- survivor's guilt and PTSD.
It’s important that you and other members your family seek assistance and advice if you experience any of these feelings.
Part of life post-treatment will involve your child having ongoing regular check-ups. These visits may raise many of these feelings again, for you and your child, even after you thought you had dealt with them. This is normal. If you or your family do experience this, make sure that you ask for help.
Post-traumatic stress disorder
Post-traumatic stress disorder (PTSD) is an anxiety disorder that can occur after serious physical injury, or mental or emotional distress. The trauma of a life-threatening disease diagnosis for yourself or your loved ones can result in PTSD. Symptoms of PTSD include:
- reliving the time of diagnosis and treatment in nightmares or flashbacks, and thinking about it all the time
- avoiding places, events and people that remind you of the cancer experience
- being constantly overexcited, fearful, irritable or unable to sleep, or having trouble concentrating.
If anyone in your family has symptoms of PTSD, make sure you talk about them and get help from your doctor.
You can also find links to further support and advice at our Find support and more information page.
Long-term follow-up and issues
Cancer and cancer treatment can affect people long after their therapy has finished. The excellent high cure rates means more and more people survive their childhood cancer. Cure sometimes comes at a price of impaired health- physical and/or psychological-emotional. This means that more people are living with the long-term effects of cancer treatments. Health problems as a result of treatment that occur months or even years afterwards are called ‘late effects.’
Late effects
Some long-term issues need to be monitored throughout your child’s life. This will depend on your child’s age when they were diagnosed, and the type of cancer and treatments they had. Issues may include:
- Heart and lung problems. Some chemotherapy and radiation therapy can cause heart or lung problems.
- Physical development. Some chemotherapy and radiation therapy may affect the development of bones, teeth, the digestive system, or hearing and vision.
- Learning problems. Some cancer treatments can affect long-term learning. Some children may need extra assistance to help them keep up with their peers in school.
- Emotional issues. Emotional wellbeing may be affected long after treatment ends. See Emotional wellbeing for more information.
- Social issues. Your child’s social skills may be a bit behind other children their age, especially if they had lots of time off school.
- Sexual development and fertility issues. Some treatments, such as chemotherapy, radiation therapy and surgery, can affect a child’s sexual organs. This may result in delays or infertility.
- Second cancers. Some treatments can increase the chances of subsequently developing a different type of cancer later in life. These are called second cancers.
Every child is different and not all will experience these issues. Cancer survivors must continue to monitor their health with regular visits and follow-up tests throughout their life. It is very important that a regular family doctor that can provide this supervision be identified.
It’s a good idea to talk about the risk of these potential problems with your oncologist when they are explaining treatment options (see How is cancer treated?). However, if your child develops any problems, they may need to be monitored or treated for a long time.
For these reasons, it’s important to keep a record of all of your child’s treatments. They will need this information in the future, so doctors know their complete medical history when assessing them for health conditions throughout life.
Staying healthy
Because cancer survivors are at risk of some late effects, staying healthy becomes even more important. Making some lifestyle changes will set a positive example for your family and help them all develop good health habits. Positive lifestyle changes now will also help to lessen the seriousness of any late effects for your child in the future.
Positive lifestyle changes include:
- eating a healthy diet
- getting regular exercise
- limiting alcohol
- stopping smoking and any illicit drug use
- sun protection
- maintaining ideal body weight
For more information about staying healthy, ask your doctor or see Cancer Australia’s Healthy living webpage.
Will the cancer come back?
Some children and parents feel anxious about treatments ending. It’s common to feel that the treatment is doing something to stop the cancer from returning, However, for most childhood cancers the appropriate duration of therapy has been determined to ensure the best chance of cure. Continuing therapy beyond this time only adds to toxicity without improving cure. Stopping treatment doesn’t mean the cancer will come back.
Doctors will monitor your child after treatment for any signs of that the cancer is returning. These tests are an important part of the follow-up. You will probably feel very anxious and nervous while waiting for the results. This is quite normal. However, Support groups are available to help you manage this anxiety.
Sometimes, cancer does come back (also known as ‘recurrence’). If this happens, there are very likely to be further treatment options available for your child. Some may be the same, or your doctor may try a different approach or treatment. There’s also the increasing possibility that new treatments or clinical trials will become available, identified through research.
Second cancers[1]
A second cancer is a new, different cancer in someone who has already had cancer. It’s not the same as a recurrence, which is when the same cancer comes back. A second cancer is a different type of cancer to the first.
Some cancer treatments such as chemotherapy and radiation therapy can increase the risk of a second cancer.
Your doctor can explain if your child is at increased risk of developing a second cancer, and if they need any extra screening.
