My child has cancer...
what happens next?
Scroll down

BannerJourney

My child has just
been diagnosed
with cancer…
Tests Staging Types/causes Emotions and feelings

JonShears

"Life turned upside down! All I remember is confusion and stress. This was the most difficult time of my life" Jon, Danny's dad 

Who will look
after my child?
Specialist hospitals Hospital staff MDT Being in hospital

JoBeaumont

“I think it is so important to help and support families at this difficult time with information and advice" Jo, Family Support Worker

What treatment will
my child receive?
Surgery Chemotherapy Radiotherapy Immunotherapy Clincial trials Living and coping with cancer Drug information

BobPhillipsPart of the reason I do my job is because I find it interesting and I want to use all of my clinical knowledge and experience to make my patient better

Dr Bob Phillips, Paediatric Oncologist
What happens when my
child finishes treatment?
Follow up Post-treatment care

MumandChildCrop

"End of treatment can be a time of mixed feelings. It is ok to feel nervous, anxious and excited" Dr Jo Horton, Psychologist

Various tests and scans will be done to diagnose your child's illness and to monitor your child throughout treatment.

  • so that the cancer or leukaemia can be diagnosed accurately. Sometimes, it's hard to tell the difference between specific types of cancer. Your child's doctor may talk to other doctors to ask their opinion and advice about the diagnosis. They will have the support of other cancer experts around the UK and overseas.
  • to see where the cancer is in the body and whether or not it has spread.
  • to assess your child's general health, as this may affect the treatment that is given. 

Further tests may be needed before treatment begins. This may mean that treatment doesn’t start for a few days. Generally, cancer develops slowly, so delaying the start of treatment for a short time won’t make it less effective. It is important to know the type of cancer your child has and whether it has spread in the body. This information will help your doctor to choose the most effective treatment.

Read more about the tests and scans your child might have

The stage of a cancer means the size of the tumour and whether or not it has spread beyond where it started in the body. Knowing the extent of the cancer helps doctors decide on the best treatment for your child.

Staging applies to nearly all cancers apart from leukaemia.

Generally, cancer is divided into four stages:

  • Stage 1 – the cancer is small and only in one place in the body;
  • Stage 2 or 3 – the cancer has spread into parts of the body close to where it started;
  • Stage 4 – the cancer is large or may have spread to other parts of the body.

Different cancers have specific staging systems.

The doctors will talk to you about your child’s situation and explain what it means.

If the cancer has spread to distant parts of the body it is known as secondary or metastatic cancer.

Understanding more about the cancer your child has and the treatments that may be used can often help parents to cope.

Your child's specialist will give you more detailed information, and if you have any questions it is important to ask the specialist doctor or nurse who knows your child's situation.

Find out more about your child's cancer

 

It is still unknown as to what causes childhood cancer and research is being done to find out more.

Parents often worry that something they did or didn’t do may have caused their child’s cancer. This is not the case, so you shouldn’t feel guilty or that you’re to blame for your child’s illness.

It’s very rare for another child in a family to develop cancer, as most cancers aren’t caused by an inherited faulty gene and so it is usually not necessary to investigate siblings.

Cancer is not infectious and can’t be passed on to anyone who comes into contact with your child.

Sometimes, two or three children in the same school or local area develop cancer. This can make people worry that something in the local area is causing the cancer. Several cases of cancer in a small area are known as a cancer cluster.

Cancer clusters are carefully investigated, but are usually found to be a coincidence rather than being caused by a particular chemical or environmental change.

Having a child diagnosed with cancer will affect you as parents or carers, and the people close to you.

Understandably, you may feel worried and stressed as you come to terms with the diagnosis and what it means for your child to go through treatment. You may worry that your child will suffer and that your family life is going to be completely disrupted. At first, you may worry that your child is going to die.

When you’re first told the diagnosis, you may feel numb, confused, or unable to hear or remember information about your child’s diagnosis or treatment. You may also feel overwhelmed by painful and powerful emotions. These reactions are normal – remember the doctors and nurses are there to help you at this time. There are also other people and organisations that can offer support.

Find out more about the emotions you might be feeling

Your child will be treated in one of the 20 specialist paediatric oncology treatment centres based within a main hospital across the UK and Ireland. The doctors and nurses based within these centres are experts in treating and caring for children and young adults with cancer.

Often, some of the treatment which your child receives can be given at your local hospital under the guidance of the nearest specialist centre. This allows your child to be treated closer to home and, more importantly, gives better access to local community support services.

This is called 'shared care' and the local hospitals are known as Paediatric Oncology Shared Care Units (POSCU).

Find your nearest principal treatment centre

Many different hospital staff will be involved in your child’s care and at first meeting all the staff may seem overwhelming. A team of specialists will plan your child's treatment according to the latest national guidelines to ensure your child will receive the best possible care.

Find out more about the hospital staff involved in your child's care

A team of specialists will plan the treatment they feel is best for your child’s condition. This multidisciplinary team (MDT) is led by a consultant oncologist/haematologist who specialises in the treatment of cancer or leukaemia and may also include other allied professionals such as a psychologist, occupational therapist, physiotherapist and social worker.

All the staff involved are specialists in their field, many with an international reputation for their work, and they work together to ensure that there is a consistent and co-ordinated approach to your child's treatment and care.

Find out more about MDTs

Children’s wards are relaxed and friendly places that give you and your child as positive an experience as possible. You’re likely to get to know the staff well.

Almost all children’s wards have facilities where parents can stay overnight. Brothers and sisters may be able to stay too. Most children, especially younger ones, want their family to spend as much time with them as possible. Your child may seem upset when you arrive or leave, and this can be difficult for both of you. Whenever you have to leave, make sure you say goodbye and tell your child and the ward staff when you’ll be back.

Find out more about being in hospital with your child

Surgery is an important part of cancer treatment. Depending on the size and position of the tumour in the body, an operation to remove it may be the first part of treatment.

A biopsy of the tumour is often taken first to make your child's diagnosis. This involves taking a piece of tissue from the tumour so it can be looked at in the laboratory by the pathologist. They will then identify the type of cancer.

Sometimes, an operation may be dangerous or cause too much damage because of the size and position of the tumour. In this situation, chemotherapy or radiotherapy may be given before the operation to shrink the tumour and make surgery easier.

Chemotherapy is the use of anti-cancer (cytotoxic) drugs to destroy cancer cells. Children usually have a combination of chemotherapy drugs.

The number of drugs your child has will depend on the type of cancer or leukaemia they have. The doctors will explain to you which drugs are being used and when they will be given.

Chemotherapy drugs affect dividing cells. This includes some normal cells, such as those in the lining of the mouth, bone marrow, the hair follicles and the digestive system. Healthy cells can repair the damage caused by chemotherapy but cancer cells can’t, so they eventually die.

Chemotherapy can be given in different ways – either as tablets, capsules or liquids that are swallowed, or by injection. There are many technical terms used to describe how the drugs are given. You will see these on your child’s drug chart and on treatment plans (protocols).

Find out more about chemotherapy and its side effects

Radiotherapy treats cancer by using high-energy rays to destroy cancer cells in a particular part of the body, while doing as little harm as possible to normal cells. The treatment is usually given in the hospital radiotherapy department as a series of short daily sessions over a few weeks.

The treatments are usually given from Monday–Friday with a rest at the weekend. Your child’s doctor will discuss the treatment and possible side effects with you.

The length of treatment will depend on the type of cancer your child has.

Find out more about radiotherapy and its side effects

Immunotherapy drugs target specific cancer cells.

For example, rituximab (Mabthera®) is a treatment used to treat some types of lymphoma. It attaches itself to a particular protein on the cancer cell and triggers the body’s own immune system to attack and destroy the cancer cells. Because it targets specific cells, other parts of the body are not affected and the side effects are usually mild.

Immunotherapy is only suitable for certain types of cancer. It’s usually given with chemotherapy.

Many children and young people with cancer are treated on clinical trials. A clinical trial is a medical research study involving people and there are many different types of clinical trial which are essential to developing new methods to prevent, detect and treat cancer.

Clinical trials are a core part of the way care is delivered for children with cancer, and are often international because of the small numbers involved. Treatment follows specifically designed protocols or, in a small number of cases where there is no clinical trial, a national UK guideline.

Read more

During treatment, you and your child are thrown into an unfamiliar world of hospital visits, routine tests, scans and treatment. This is a huge adjustment to make on normal family life, particularly if you work and have other children to look after.

Our publications cover a range of topics on coping and dealing with cancer and its treatment and Contact magazine is an invaluable source of information and personal stories.

Helping family members

Dealing with school

In response to demand from parents, the CCLG Publications Committee and CCLG Pharmacy Group are in the process of developing drug-specific factsheets for commonly used medicines. In the meantime, you can find out more about chemotherapy and other treatments

Chemotherapy

Treatment

 

 

 

The majority of children won’t have any long-term effects. Where these do occur, they happen because of the damage cancer treatment can cause to healthy cells in the body. These effects can occur as a result of surgery, radiotherapy, some chemotherapy drugs and bone marrow transplants. Most problems result from chemotherapy or radiotherapy.

They depend on four things:

  • the type of treatment,
  • the site of treatment,
  • the dose of treatment,
  • your child’s age during treatment.

The long-term effects may include problems with growth and development, heart, lung and kidney function, and fertility.

Read more about follow-up tests

Although your child will no longer receive active treatment in hospital, they will continue to be part of an important aftercare support service. There are now new models of care and support for people living with and beyond cancer within the NHS system and your child will receive follow-up care and support well into adult life.

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.

Read more about what happens next after treatment has finished

Sadly, sometimes parents are faced with the devastating news that there are no more treatment options available for your child which means that a cure is now no longer possible.

The goal shifts from being able to cure your child's disease to providing the best quality of life for your child and managing their symptoms. You and your child will be looked after by a specialist team with expertise in managing symptoms and providing emotional and practical help and support to the whole family.

Palliative care is the phase of treatment where cure is no longer possible, and is concerned with managing symptoms and quality of life.

Read more about palliative care

This section explains some of the more common symptoms, their causes and treatments.

It also gives you some ideas on what you can do as a parent.

Not every child will have every symptom, most will only have a few. If your child develops one of these symptoms, this section should be able to answer some of your questions, until you have a chance to discuss it with your doctor or nurse.

Read more

In this section, you will find some ideas that you may wish to think about when you are trying to face the fact that your child is probably going to die. Knowing what has helped other families in a similar situation may help you find your own way of facing this difficult time.

We cover some of the worries other parents have experienced and offer suggestions of how to answer some of the more difficult questions.

Read more

When a child dies, it simply does not make any logical sense. We do not expect to outlive our children. It is not the normal way of things. Suddenly, all the promise of that young life has gone. The sadness and grief can be overwhelming and it can feel as if nobody understands your pain.

This section of our website will try to convey what some parents and professionals have found to be helpful or unhelpful at this very difficult time. We could not address all cultural, ethnic, spiritual and religious points of view, and acknowledge that this section is largely written from the Western perspective. Thoughout the section, we have referred to 'parents', by which we mean the main carers of the ill child.

Read more