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Non-Hodgkin lymphoma in children

Lymphoma means cancer of the lymphatic system.

The lymphatic system is a system of thin tubes and lymph nodes that run throughout the body. These tubes are called lymph vessels or lymphatic vessels. The lymph system is an important part of our immune system. It plays a role in fighting bacteria and other infections and destroying old or abnormal cells, such as cancer cells.

Parts of the lymphatic system

Hodgkin lymphoma and non-Hodgkin lymphoma

There are 2 main types of lymphoma. They are called Hodgkin lymphoma and non-Hodgkin lymphoma.

Hodgkin lymphomas have a particular appearance under the microscope and contain cells called Reed-Sternberg cells. Non-Hodgkin lymphomas look different under the microscope and do not contain Reed-Sternberg cells.

It’s important that doctors can tell the difference between Hodgkin and non-Hodgkin lymphomas. They are two different diseases and the treatment for them is not the same.

How common is non-Hodgkin lymphoma?

Any type of cancer in children is rare. Around 95 children (aged 0 to 14 years) are diagnosed with non-Hodgkin lymphoma (NHL) in the UK every year. NHL is more common in boys than in girls, the reasons for this are unclear.

Symptoms

The most common symptom of NHL is one or more painless swellings in the:

  • neck
  • throat
  • armpit
  • groin

These swellings are enlarged lymph nodes.

Some lymph nodes might be swollen in areas you can’t feel. Your child might feel breathless or have a cough that doesn’t go away if they have swollen lymph nodes in the chest. They might feel full quickly if they have swollen lymph nodes in their tummy or if they have an enlarged spleen.

In some children with a type of NHL called Burkitt’s lymphoma, enlarged lymph nodes cause one part of the gut to slide forward and become stuck in the next part of the gut. This causes swelling and maybe a blockage. It can cause symptoms such as:

  • severe pain in the tummy area (abdomen)
  • blood in the poo
  • high temperature

More general symptoms

Some of the other symptoms of NHL in children are less specific.

Your child might be extremely tired, even when they have had plenty of rest. You might notice they are losing weight. They might also be very itchy, which can be quite frustrating for them.

Your child might have a collection of symptoms called B symptoms, although these are less common. These include:

  • having heavy night sweats – you may be needing to change your child’s pyjamas and bed sheets overnight
  • having high temperatures that come and go with no obvious cause
  • losing a lot of weight

Symptoms can be very similar to those of other childhood illnesses. And vary between children. So, if you notice anything that isn’t normal for your child, take them to the GP.

Getting diagnosed

A specialist removes part or all of the swollen area to make a diagnosis. This is called a biopsy. A doctor looks at the sample under a microscope. They check to see if there are any NHL cells.

Your child has their biopsy under general anaesthetic. This means they are asleep throughout the test and they can’t feel any pain during the procedure. Your child’s team use scans to help find the best area to biopsy, if the lump isn’t in an easy to reach place.

It’s likely that your child will have other tests if lymphoma cells are found. This gives the team more information about the type of NHL. And it helps them see if there are other parts of the body affected by lymphoma. These tests are sometimes called staging tests.

Your child’s team are specially trained in helping children feel comfortable while having these tests. They do everything they can to make sure your child, and you, are prepared and comfortable.

They might have:

Blood tests can:

  • check your child’s general health, including liver, kidneys and heart function
  • check numbers of blood cells
How

A doctor, nurse or person specialising in taking blood (a phlebotomist) takes a small amount of blood from your child. This is usually from the back of the hand, the inside of the elbow or wrist area.

Most blood tests take a couple of minutes. 

The specially trained staff will help your child feel as comfortable as possible. Things that can make it easier for your child include:

Local anaesthetic

The phlebotomist might use a local anaesthetic (numbing spray or cream) before the test. This should mean it’s less painful for your child, although they might still feel the needle go in.

Distraction

Distraction could be singing, counting, watching something on your mobile phone or a DVD.

Sitting with your child

Holding your child while they are having their blood test can make them feel safe and secure. And you can give them a cuddle afterwards if you’re unable to hold them during their test.

After

Your child can usually eat, drink and play as normal after a blood test.

X-rays use high energy rays to take pictures of the inside of your body. Chest x-rays can show:

  • fluid
  • signs of infection
  • an enlarged heart
  • enlargement of the lymph glands in the chest
How

There is no special preparation for an x-ray. Your child usually has a chest x-ray standing up against the x-ray machine if they are old enough to stand. They have it lying on the x-ray couch if they are younger or unable to stand.

Photograph of Child having a chest x-ray

X-rays are painless and quick. Your child won’t feel or see anything. You are usually able to stay in the room when your child is having their x-ray. You need to wear a lead apron to protect you from the small amount of radiation.

Your child’s specialist makes sure the benefits of having an x-ray outweighs the risks of the small amount of radiation.

After

Your child can usually eat, drink and play as normal after a chest x -ray.

Your child has this test to check whether there are cancer cells in the bone marrow. Bone marrow is spongy tissue and fluid that is inside your bones. It makes your blood cells.

How

A doctor or specialist nurse removes a sample of bone marrow fluid (called a bone marrow aspirate). Or a small piece of bone marrow (called a trephine). Your child might have both tests at the same time.

This sample is usually taken from the back of their hip. Doctors then look at the cells or tissue under a microscope.

Diagram showing a childs bone marrow biopsy

Your child usually has this test in the daycare department of the hospital. Most children and young people have this test under general anaesthetic. Or they might have a medicine to make them feel sleepy and relaxed (sedative). This helps them lie still on the couch for the test.

Some older children might have gas and air (Entonox) instead of sedation to help them relax.

After

Your child stays on the day unit or children’s ward for a couple of hours after the test. This is so the team can be sure they have recovered and are awake enough from the sedation or anaesthetic. The nurses on the unit usually check that your child has:

  • had something to drink
  • had something to eat or some milk
  • had a wee
  • a clean and dry dressing over the site of the test

A bone marrow biopsy is a safe test. Your child’s doctor or nurse talks with you about any possible problems they might have after it. They give you a phone number to call if you have any problems after, if in doubt, give the number a call.

It’s likely your child can go home the same day, unless they are staying in hospital for other tests.

A lumbar puncture is a test to check the fluid that circulates round the brain and spinal cord. This is called cerebrospinal fluid or CSF. A lumbar puncture can check for cancer cells or for infection in the CSF. Using a needle your child’s doctor, or specialist nurse, takes a sample of the CSF from their lower back.

Diagram of a childs Lumbar Puncture

How

Most children have a sedative drug, or general anaesthetic, for this test. This is to make them sleepy and help them lie still. They then have an injection of anaesthetic into the area on the lower back. 

When the area is numb, the doctor or nurse puts the lumbar puncture needle in through the skin. It goes into the small of the back and into the space around the spinal cord. They might feel some pressure and a slight soreness when the needle goes in.

Once it's in the right place, the fluid drips out into a pot. This only takes a few seconds. The doctor or nurse takes the needle out and puts a dressing or plaster on your child’s back.

After

Your child’s team will talk you through the benefits and risks of having a lumbar puncture. There is a risk of bleeding and infection, but this is very rare.

You should contact your hospital if your child is at home after a lumbar puncture and they get symptoms such as:

  • a severe headache
  • being sick
  • their eyes are sensitive to bright light
  • tingling or numbness in their legs

Your nurse will tell you what symptoms to look out for and who to contact if you have any problems at home.

It’s likely your child can go home the same day, unless they are staying in hospital for other tests.
 

CT stands for computed tomography. A CT scan uses x-rays and a computer to create detailed pictures of the inside of your body. It takes pictures of the body from different angles. A computer then puts them together to give a series of pictures. It can help doctors find out what an unusual lump might be.

The scan itself is painless. Your specialist team will let you know how:

  • to help your child prepare
  • long your child needs to not eat or drink before their sedation
  • long the scan is likely to be
How

Your child might have an injection of contrast medium (a type of dye) through a small thin tube (cannula) in their hand or arm.

Many young children have a medicine to make them feel sleepy and relaxed (sedative) to help them lie still on the couch for the scan. The couch slowly slides backwards and forwards through the hole of the scanner. The machine takes pictures as it moves.

After

Your child stays on the day unit or the children's ward for a couple of hours after the scan. This is so the team can be sure they have recovered and are awake enough from the sedation. 

The nurses on the unit usually check that your child has:

  • had something to drink
  • had something to eat or some milk
  • had a wee

This can help the nurses see if your child has recovered from the sedative drugs.

MRI stands for magnetic resonance imaging. An MRI scan creates pictures using magnetism and radio waves.

Photograph of a child having an MRI scan
How

It produces pictures from angles all around the body and shows up soft tissues very clearly. It can help doctors find out what an unusual lump might be. It can also measure blood flow.

Many young children have a sedative or general anaesthetic to help them lie still on the couch for the scan. Most MRI scans involve around 30 minutes of lying still. Your child might have an injection of a special dye before or during the scan to help make the pictures clearer. 

After

Your child stays on the day unit or children's ward for a couple of hours after the scan. This is so the team can be sure they have recovered and are awake enough from the sedation. 

The nurses on the unit usually check that your child has:

  • had something to drink
  • had something to eat or some milk
  • had a wee

This can help the nurses see if your child has recovered from the sedative drugs.

PET scans are a type of test that create 3 dimensional (3D) pictures of the inside the body. PET stands for positron emission tomography.

Types and grading

There are many different types of NHL. And the way doctors put them into groups is quite complicated.

One way of grouping NHL is by the type of white blood cells (lymphocytes) affected. These can be B cells or T cells. Most children have B cell NHL.

B cell lymphomas

The most common type of B cell lymphoma in children is Burkitt lymphoma. Another, less common type, is diffuse large B cell lymphoma (DLBCL).

T cell lymphomas

Lymphomas that start in the T cells include:

  • T lymphoblastic lymphoma
  • anaplastic large cell lymphoma
  • peripheral T cell lymphoma

Grades

Doctors put non-Hodgkin lymphomas into 2 groups, depending on how quickly they are likely to grow and spread.

The 2 groups are low grade and high grade. The different grades of NHL are treated in slightly different ways.

Low grade NHL tends to grow very slowly.

High grade NHL tends to grow more quickly. Your doctor might call them aggressive lymphomas, although this is a term more often used to describe adult lymphomas. Most children have high grade NHL. This means they grow quickly and symptoms develop rapidly. Treatment is still generally successful for children with high grade NHL.

Staging

Childhood NHL has 4 stages. Stage 1 is an early stage and stage 4 is more advanced.The stage depends on:

  • where the lymphoma is
  • how many areas of lymph nodes are affected
  • if other organs in the body are also affected

While adults with NHL mainly have disease in their lymph nodes, children often have lymphoma in their:

  • chest
  • abdomen
  • head and neck area

NHL outside the lymph nodes is called extranodal disease.

The diaphragm (pronounced dia-fram) is the big breathing muscle that separates the chest from the tummy (abdominal) area.  Doctors use the diaphragm as a guide because it is about halfway down the body. It’s important in the staging of children’s NHL.

Knowing the stage of the NHL can help your child’s specialist plan the best treatment possible. Your child’s consultant will explain what stage their lymphoma is and how this relates to treatment.

Most children have stage 3 or 4 lymphoma when they are diagnosed.

Treatment

There are successful treatments for all stages of NHL.

Survival

Almost 90 out of 100 children (almost 90%) with non-Hodgkin lymphoma in the UK survive for 5 years or more after they are diagnosed.

Types of treatment

Chemotherapy is the most important treatment for children with NHL. Children usually have a combination of chemotherapy drugs and steroids. Some children will have radiotherapy, but this is less common.

Some children with B cell lymphoma have treatment with a type of targeted drug called rituximab. There are many different types of targeted drug and rituximab is a monoclonal antibody. It targets a protein called CD20 on the surface of the leukaemia and lymphoma cells. Rituximab sticks to all the CD20 proteins it finds. Then the cells of the immune system pick out the marked cells and kills them.

Some children have high dose chemotherapy treatment, followed by a stem cell transplant. This is only if their lymphoma is not responding to treatment or comes back after treatment.

Your child’s doctor will talk with you about the treatment plan. Treatment depends on many factors including:

  • the stage
  • the grade
  • the type of lymphoma
  • your child’s age
  • how well your child is when they are diagnosed

Side effects

Treatment for NHL can have short and long term side effects. Your child’s doctors are unable to predict which side effects your child is likely to have. Everyone reacts differently to cancer treatment.

Short term

Chemotherapy damages dividing cells. Cancer cells divide much more often than most normal cells. So, chemotherapy damages cancer cells and can destroy them. Some normal cells divide very often too. This happens in tissues that need a steady supply of new cells, such as the skin, hair and nails.

Chemotherapy can also damage these cells, and this causes side effects. But the damaged normal tissues can generally repair themselves and recover.

Short term side effects of chemotherapy include:

  • a drop in white blood cells leading to an increased risk of infection
  • breathlessness and looking pale from a drop in red blood cells
  • a drop in the number of platelets that help clot your blood, leading to bruising or bleeding
  • feeling or being sick
  • a sore mouth
  • constipation or loose poo

Your child’s team are used to helping children and their families to manage side effects. Medicines and complementary therapies can help.

Long term

Most chemotherapy side effects are temporary and disappear once treatment is over.

But for some people, chemotherapy can cause long term changes in the body. Some of these changes may happen months or many years after the treatment has finished.

Late side effects can include:

  • early menopause
  • fertility problems
  • hormonal changes
  • heart or lung problems
  • second cancers

Your doctor and specialist nurse can talk to you about the risk of late side effects for your child.

Doctors, nurses and researchers are interested in ways of reducing the number of late effects that children have from their treatment. A lot of current research focuses on treating childhood cancer successfully, while reducing the side effects.

Follow up

Children have follow up appointments for many years after cancer treatment. These appointments are to check:

  • how they are recovering
  • their development
  • if they are having any problems following treatment
  • if there are any signs of the lymphoma coming back

Long term follow up clinics are available for those who are 5 years or more from the end of their cancer treatment. You child usually sees a specialist nurse. Alongside their general health check, your child might have discussions around:

  • fertility
  • employment
  • second cancers

The specialist nurse can make referrals to other professionals when needed.

Clinical trials

It’s common for children to have their NHL treatment as part of a clinical trial. This helps doctors to:

  • try to improve treatment for all children with NHL
  • learn more about the disease and treatment side effects

Talk to your child’s doctor or clinical nurse specialist to find out more about clinical trials. You can also search for a clinical trial on our clinical trials database.

Researchers hope to have results of a large trial looking at treatment for children’s B cell lymphoma soon. These results will help doctors plan further trials and improve treatment.

NHL that has not gone away with treatment or has come back

There are current clinical trials for children with some types of NHL that:

  • is not responding to treatment
  • has come back after treatment
  • is likely to come back after treatment

 Researchers are looking at how a targeted cancer drug called ibrutinib can help children with certain types of NHL. Ibrutinib is a cancer growth blocker. It stops signals that lymphoma cells use to divide and grow.

Immunotherapy using CAR T-cells

Immunotherapy uses our immune system to fight cancer. As part of a clinical trial, researchers are looking at using CAR T-cell immunotherapy to treat a small number of children with B NHL that:

  • has come back after treatment
  • is likely to come back after treatment

CAR T-cell therapy is a very complex and specialist treatment. With this treatment, a specialist collects and makes a small change to your child’s T cells. These then target the cancer cells.

Coping when your child has cancer

It is understandably devastating when a child is diagnosed with cancer. Although many children with cancer are successfully treated, it is a difficult time for everyone affected.

As well as the doctors and nurses on the ward, you and your child will be supported by a number of professionals during and after treatment. These include your GP, cancer nurse specialists, social workers, play specialists and a psychologist or psychotherapist.

We have detailed information about what to expect when your child is first diagnosed with cancer. And ideas about supporting their siblings.

Talking to other people who are experiencing the same thing can also help. Our discussion forum Cancer Chat is a place for anyone affected by cancer. You can share experiences, stories and information with other people who know what you are going through.

There are children's organisations that you can contact for help and support.

Lymphoma Action are a good source of advice and support for people affected by lymphoma. They have information especially for parents and for young people.

The Children’s Cancer and Leukaemia Group (CCLG) provide information on all aspects of childhood cancer. They have information and videos on childhood NHL.

CLIC Sargent can offer help and support for parents who have a child recently diagnosed or living with childhood cancer. They can also help you access financial support.

The Future Fertility Trust is run by a team of doctors, researchers and tissue bank specialists from the University of Oxford and the Oxford University Hospitals NHS Foundation Trust.

It aims to help children and young people at risk of infertility due to illness or treatment. 

Last reviewed: 
13 Aug 2019
  • Statistics come from the Cancer Intelligence Statistical Information Team at Cancer Research UK

    May 2019

  • Non-Hodgkin lymphoma

    K Shankland and others

    The Lancet, 2012. Volume 380, Issue 9844

  • Cancer Research UK Clinical Trials Database

    Accessed October 2018

     

  • Revised International Pediatric Non-Hodgkin Lymphoma Staging System

    A Rosolen and others

    Journal of Clinical Oncology, 2015

    Volume 33, Number 18

  • Burkitt's lymphoma

    EM Molyneux and others

    The Lancet, 2012

    Volume 379, Issue 9822

  • UpToDate: Overview of non-Hodgkin lymphoma in children and adolescents

    Accessed July 2019

     

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