Cancer in children and young people

Cancer diagnoses in children and young people are rare. In Scotland, about 150 new cases are recorded each year for children aged up to 16 years and 180 new cases are recorded for young people aged 16 – 24 years.

Teenagers and younger adults can develop cancers most commonly seen in children, although sometimes those more common in adults. 

Read about the types of cancer that can affect children and young people

Symptoms

When a child or young person experiences symptoms that could be caused by cancer, they will be referred to hospital by their GP for tests. There are many different signs and symptoms, but it is important to remember that having these symptoms does not always mean you have cancer. 

The main signs and symptoms of cancer to watch out for are:

• pain that does not go away quickly
• lumps or swellings
• sweating more than usual
• headaches or dizziness that do not go away
• sudden weight loss
• fatigue
• unexplained bruising or bleeding

If you or your child are experiencing any symptoms that are worrying you, the first thing to do is visit your GP who may decide to follow these up with tests to find out if cancer is present in the body and what type of cancer it is.

Tests used to diagnose conditions include:

• biopsies (where a small piece of tissue is removed and examined)
• blood tests
• scans (e.g. bone scan, ultrasound)
• lumbar punctures (where a small sample of fluid is removed from around the spinal cord)
• X-rays

Treatment

Different types of specialists work together as a team across Scotland, to provide the best quality of care to patients who are diagnosed with cancer. Some patients may receive all of their treatment in one hospital, while other patients may receive care from more than one hospital, depending on what therapies they need for their condition. See the list of main treatment centres in Scotland.

There are many forms of cancer treatment. Your treatment will depend on the type of cancer you have and where it is in the body. Some teenagers or young adults who are diagnosed with certain types of cancer, respond better to treatment that is tailored to younger people rather than treatments designed for adults.

Treatment may be given in one form, for example - surgery; or you may have more than one type of treatment for your diagnosis, for example - surgery and radiotherapy. Your doctor will discuss a suitable course of treatment specially designed for you and your body.

The main types of treatment:

• surgery - an operation to remove all or part of the cancer
• chemotherapy - where chemical substances are introduced to the body to kill cancer cells
• radiotherapy - a treatment involving the use of high-energy radiation
• brachytherapy - a type of internal radiotherapy
• bone marrow transplantation - replaces damaged bone marrow with healthy bone marrow stem cells and peripheral blood stem cell transplantation - a technique used to restore a person's blood cells after they have been damaged by chemotherapy or radiation
• targeted therapies - which interfere with specific molecules that control cancer cell growth

Going to hospital

Going to the hospital can seem daunting, but the health professionals responsible for your care will provide you and your family with information and discuss your treatment plan with you, along with any other concerns you have. Depending on the treatment you need, you may have several different specialists involved in your care.

These specialists will include doctors, nurses and other health professionals who can help ease any side effects such as:

• speech and language therapists are specialists that support children and young people who experience speech, language and communication difficulties
• occupational therapists who help patients by developing strategies to assist any difficulties experienced when carrying out everyday tasks, e.g. when help is needed with eating and drinking
• physiotherapists help patients with physical ability or fitness by providing rehabilitation, specific exercise, advice and support

Side effects

Children and young people can experience side effects from their treatment. Normally, these are short-lived and go away after treatment has ended. Some young people may experience late effects, which are side effects that can be experienced months or years after treatment has ended.

• medicine and complementary therapies can help reduce some side effects, particularly pain and nausea
• occupational therapists can help with strategies on coping with mobility issues
• psychologists and clinical nurse specialists can assist with concerns about body image. Some young people lose their hair and can experience changes in their skin – these are usually temporary effects from treatment
• the dietician can diagnose and treat dietary and nutritional problems that occur. They can provide advice on eating and supplements where necessary
• youth support workers and counsellors are aware of the issues faced by teenagers and young adults and can help young people to find ways of coping with anxiety as well as social matters like finance, childcare and benefits
• psychologists help patients deal with how they feel when diagnosed with cancer, going through treatment, experiencing side-effects of treatment and how they feel when treatment has finished

Young cancer patients can experience side-effects known as late effects. These are long term effects that begin during or shortly after treatment and do not go away quickly, but can often be managed with the right support. Examples of late effects include issues with growth, development, fertility and decreased mobility. It is important to discuss the possibility of late effects with your doctor or clinical nurse specialist.

Practical and emotional issues

Cancer can affect children, teenagers and young adults in different ways including physical changes, psychological issues and practical problems. Having a diagnosis of cancer can cause anxiety, stress and even depression for both children and young adults. It is important to talk to someone when experiencing anxiety or stress such as friends, family, your doctor or counsellor.

Younger children have different support needs to those of teenagers and young adults. Feelings such as anxiety or loneliness can be helped by:

• clinical nurse specialists who are experts in the care of young cancer patients and can help explain what to expect when going for a scan or having treatment
• doctors and nursing staff providing information on the condition, treatments and the possible side-effects of treatment
• play specialists who work onwards and in day care environments are there to support children and provide them with coping mechanisms which help to allay their fear and concerns
• the family being seen to be strong, positive and supportive. Siblings often play a vital role in reducing anxiety felt by an unwell brother or sister
• bringing their favourite toy, DVD or a tablet computer with them to appointments and hospital stays
• communicating with young people experiencing similar issues, groups or forums such as the MSN CYPC Community Forum

Keeping up with school work

Informing the head teacher of the school as soon as possible will enable them to work with the hospital to help keep children and teenagers involved with school work where they are able to. Some children's hospitals have their own teachers who can help with school work. Friends from school may also be able to visit and bring work with them.  

Youth support workers and social workers that work within the hospital can help by providing practical information, advice and support to patients and families. Patients may benefit from information on finance, benefits, child care, housing and charity grants.

Further information and support

The Managed Service Network (MSN) for Children and Young People with Cancer is a group of healthcare specialists that work within NHS Scotland Health Boards. The MSN for Children and Young People with Cancer works as a team to provide the highest quality of cancer care for children and young people in Scotland. See their website for information tailored for young children, teenagers, young adults and parents.