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.

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.

This video explains what lymphoma is and how it starts. And the difference between Hodgkin lymphoma and non-Hodgkin lymphoma. The video lasts just over 3 minutes.

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 of the lymph nodes in the:

• neck

• throat

• armpit

• groin

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 also complain of pain or discomfort if they have cancer in their chest or tummy (abdomen). Some children also 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

• feeling or being sick

• 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. Less commonly they might also be very itchy, which can be quite frustrating for them.

Your child might have a collection of symptoms, that you might hear called B symptoms, although these are less common they do not change the treatment.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 uses scans to help find the best area to biopsy, if the lump isn’t in an easy to reach place. 

Occasionally it might be possible to use a local anaesthetic for the biopsy for an older child.

It’s likely if your child's doctor finds lymphoma cells that they will need other tests. 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.

Other tests they might have:

Blood tests

Blood tests can:

• check your child’s general health, including how well their liver and kidneys are working
• check the numbers of blood cells

How do they take blood?

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. This means that they apply a numbing spray or cream to your child's skin before they do 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. You can give them a cuddle afterwards if you’re unable to hold them during their test.

After their blood test

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

Chest x-ray

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 does your child have an x-ray?

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.

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 the x-ray

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

Bone marrow test

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 does your child have a bone marrow test?’

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.

Your child usually has this test in the daycare department of the hospital. But at diagnosis this is most likely to happen in an operating theatre with other procedures. Most children and young people have this test under general anaesthetic . This helps them lie still on the couch for the test.

After the bone marrow test

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 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.

Spinal fluid test (lumbar puncture)

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.

How does your child have a lumbar puncture?

Most children have a general anaesthetic for this test. But occasionally some older children might be able to have a local anaesthetic for their lumbar puncture. 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. If your child has a local anaesthetic 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 a lumbar puncture

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 scan

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

What happens before and during the CT scan?

Your child might have an injection of contrast medium (a type of dye) through a small thin tube (cannula) in their hand or arm. Some children also might have a drink of some water or juice with some contrast medium in before the scan.

Some young children have a medicine to make them feel sleepy and relaxed (sedative). Or they may need a general anaesthetic to help them lie still on the couch for the scan. Other children can do the scan awake with your support and help from the specialist team.

If your child has to drink their contrast medium the team will let you know how to do this if your child needs sedation or a general anaesthetic.

How does the scan work?

The couch slowly slides backwards and forwards through the hole of the scanner. The machine takes pictures as it moves.

After the CT scan

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 or general anaesthetic. 

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

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

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

MRI scan

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

How does your child have an MRI scan?

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.

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 the MRI scan

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 or anaesthetic. 

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

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

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

PET-CT scan

PET scans are often combined with CT to create detailed 3 dimensional (3D) picture of the inside the body. These are called PET-CT scans.

The PET scan uses a mildly radioactive drug to show up areas of the body where cells are more active than normal. A CT scan is a test that uses x-rays and a computer to create detailed pictures of the inside of your body. It takes pictures from different angles. 

PET stands for positron emission tomography. CT (or CAT) stands for computed (axial) tomography.

How does your child have a PET-CT scan?

Your child has an injection of the radioactive drug (radioactive tracer) through a small thin tube in their hand or arm. This happens usually 1 hour before the scan. Your child then needs to rest until they have the scan.

After the PET-CT scan

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 or general anaesthetic. 

It varies from hospital to hospital, but some children will have to spend a period of time in a room by themselves (isolation) with a parent or carer. This is because the radioactive tracer gives off very small levels of radiation, but these go away very quickly. Your child can go straight home with you if they:

• didn’t have any medicines to make them sleepy
• are not staying in hospital for other tests or treatment

Your child's treating team will give you advice on what your child can and can't do for the next few hours after the scan.

After sedation or an anaesthetic, the nurses on the unit usually check that your child has had:

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

This can help the nurses check that your child has recovered from the sedative drugs.

PET scan

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

The PET scan uses a mildly radioactive drug to show up areas of the body where cells are more active than normal. 

How does your child have a PET scan?

Your child has an injection of the radioactive drug (radioactive tracer) through a small thin tube in their hand or arm. This happens usually 1 hour before the scan. Your child then needs to rest until they have the scan.

After the PET scan

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 or general anaesthetic. 

It varies from hospital to hospital, but some children will have to spend a period of time in a room by themselves (isolation). This is because the radioactive tracer gives off very small levels of radiation, but these go away very quickly. Your child can go straight home with you if they:

• didn’t have any medicines to make them sleepy
• are not staying in hospital for other tests or treatment

Your child's treating team will give you advice on what your child can and can't do for the next few hours after the scan.

After sedation or an anaesthetic, the nurses on the unit usually check that your child has had:

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

This can help the nurses check that your child has recovered from the sedative drugs.

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

Staging

The stages of childhood NHL tell your child’s doctor about the number and places in the body that have lymphoma. This helps your child’s doctor plan the best treatment possible.

There are different staging systems for different types of NHL, and these can change slightly over time. Your child's doctor will follow the latest guidelines at the time your child gets their diagnosis. 

There are 4 stages to childhood NHL. Stage 1 is an early stage and stage 4 is advanced stage. Most children have stage 3 and 4 NHL at diagnosis.

The stages of NHL depend on:

• where the lymphoma is
• what type of lymphoma it is
• how many areas of lymph nodes have cancer cells in them
• if other organs in the body have cancer cells in them 

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

• chest
• abdomen
• head and neck area

NHL that is outside of the lymph node is called extranodal disease.

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 main treatment for children with NHL. Children usually have a combination of chemotherapy drugs and steroids . Some children will have radiotherapy, but this is rare.

Some children with B cell lymphoma have treatment with a type of targeted drug called rituximab. Rituximab is a type of 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 at diagnosis

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 side effects

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 diarrhoea

The doctors and nurses that look after your child can help manage any side effects they might get. It's important to let the team know as soon as you think your child is not quite right. There are different treatments such as medicines and complementary therapies that can help. Your specialist team will be able to discuss with you any that maybe helpful.

Long term side effects

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

• heart or lung problems

• hormonal changes

• second cancers

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

Doctors are looking at ways to lower 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 once the risk of the cancer returning is considered very low. For NHL this is for those who are 3 years or more from the end of their cancer treatment. Your child usually sees a specialist nurse. Alongside their general health check, your child might have discussions around:

• employment

• fertility

• 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

Researchers in the UK and around the world are always looking for new drugs or treatments to help children whose cancer doesn’t go away or has come back.

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.

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.