Non-Hodgkin lymphoma (NHL) in children
Non-Hodgkin lymphoma (NHL) is a type of blood cancer that affects white blood cells called lymphocytes. It is also called a cancer of the lymphatic system. This is because it starts in 
or other parts 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 . It plays a role in fighting bacteria and other infections and destroying old or abnormal cells, such as cancer cells
The diagram below shows the lymph vessels, lymph nodes and other organs. These make up 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 less common than adult cancer. Around 85 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 of non-Hodgkin lymphoma in children
The most common symptom of NHL is one or more painless swellings of the lymph nodes in the:
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neck
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throat
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armpit
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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 abdomen or if they have an enlarged .
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:
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severe pain in the abdomen
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blood in their poo
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feeling or being sick
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a high temperature
More general symptoms of NHL
Some of the other symptoms of NHL in children are less specific. This includes:
- a high temperature
- feeling sick
- loss of appetite
- weight loss
- swelling of the face
Your child might be extremely tired, even when they have had plenty of rest. They might also be very itchy, which can be quite frustrating for them. But this is less common.
Your child might have a collection of symptoms that you might hear called B symptoms. B symptoms are less common and they do not change the treatment. B symptoms include:
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having heavy night sweats – you may be needing to change your child’s pyjamas and bed sheets overnight
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a high temperature that comes and goes with no obvious cause
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losing a lot of weight
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itching of the skin
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.
Seeing a GP and referral to a specialist
You usually take your child to see their GP first. The GP might do some tests to help them decide if they need to see a specialist. These tests include:
- blood tests
- a physical examination
Depending on the results of their examination and blood tests, their GP may also arrange for them to have other tests. For example an x-ray of their chest. They usually have these tests at their local hospital.
If your child’s test results suspect NHL they will refer them to see a specialist children’s cancer doctor. These doctors are called paediatric haematologists.
UK referral guidelines
There are guidelines for GPs to help them decide who needs a referral to see a specialist or have tests. The GP will use these guidelines as well as their experience and judgement.
These guidelines vary slightly between the different UK nations.
England and Wales
These guidelines apply to anyone from birth to 24 years of age.
Your GP should refer your child to see a specialist within 48 hours (2 days) if they have any of the following and your GP can't explain the cause:
- swollen lymph nodes
- an enlarged spleen
Their doctor will ask about other symptoms, such as:
- unexplained fevers
- weight loss
- night sweats
- itchy skin
- shortness of breath
Their doctor will also want to know about any other symptoms. So do mention anything else you are concerned about.
Northern Ireland and Scotland
There are separate detailed guidelines for Northern Ireland and Scotland. If you live in these nations, your GP will use these to guide their decision. You can find these on the following websites. Please note these are intended for health professionals. Your GP can explain whether or not they are going to refer your child and why this is.
- Scottish Referral Guidelines for Suspected Cancer
- Northern Ireland Referral Guidance for Suspected Cancer - Reg Flag Criteria
Tests to diagnose NHL in children
Your child will need a number of tests if their doctor suspects they have NHL. For some types of tests your child might need to have or a .
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. They will explain in detail what tests your child will have. They will also tell you about any special instructions to help prepare for the test.
The tests they might have include one or more of the following:
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blood tests
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a chest x-ray
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a bone marrow test
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a spinal fluid test (lumbar puncture)
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a CT scan
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an MRI scan
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a PET-CT scan
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a PET scan
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taking a sample of tissue (biopsy)
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genetic 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
Your child also has blood tests to check for infection. This is because some viruses can be linked to NHL.
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
Your child might have a before the test. This is usually a cream that is put on about 30 to 60 minutes in the area they will take the bloods. Or they might use a cold spray. This should mean it’s less painful for your child, although they might still feel the needle go in.
Distraction
Distraction could include:
- singing
- counting
- using bubbles
- reading them a story
- using books that have pop ups or music
- watching something on your mobile phone or tablet
If your child has blood tests at the hospital they might have a health play specialist. They can help your child cope and distract them while having the blood test. This can help your child feel less anxious and scared.
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.
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.
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 such as a lumbar puncture test.
Most children and young people have this test under . This helps them lie still on the couch for the test.
After the bone marrow test
After their test your child’s nurse will look after them closely when they return and take regular measurements such as their:
- heart rate
- breathing rate
- blood pressure
- oxygen levels
- temperature
This is so the team can be sure they have recovered and are awake enough from the anaesthetic. The nurses also usually check that your child has:
- had something to drink
- had something to eat or some milk
- had a pee
- 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.
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. If your child is having a bone marrow test they will have these at the same time.
How does your child have a lumbar puncture?
Most children have a for this test. But occasionally some older children might be able to have a for their lumbar puncture.
Sometimes the area where the needle goes in is numbed with a local anaesthetic.
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.
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
After the lumbar puncture your child’s nurse will look after them closely when they return and take regular measurements such as their:
- heart rate
- breathing rate
- blood pressure
- oxygen levels
- temperature
This is to make sure they are recovering from the anaesthetic. The nurses also checks that your child has:
- had something to drink
- had something to eat or some milk
- had a pee
- a clean and dry dressing over the site of the test
The area might be a little sore or bruised that lasts for a couple of days.
Your child will need to lie flat for about an hour after the procedure to help prevent headaches.
Let your child’s healthcare team know if they get symptoms such as:
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a severe headache
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being sick
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their eyes are sensitive to bright light
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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 the body. It takes pictures of the body from different angles. A computer then puts them together to make a 3 dimensional (3D) image. 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:
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to help your child prepare
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long your child needs to not eat or drink before their sedation
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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 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
After the CT scan your child’s nurse will look after them closely when they return and take regular measurements. This is so they can be sure they have recovered and are awake enough from the sedation or general anaesthetic.
The nurses on the unit usually also check that your child has had:
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something to drink
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something to eat or some milk
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a pee
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.
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.
How does your child have an MRI scan?
Many young children have a or to help them lie still on the couch for the scan. An MRI scan can take around 20 to 60 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
After the MRI scan your child’s nurse will look after them closely when they return and take regular measurements. This is so they can be sure they have recovered and are awake enough from the sedation or general anaesthetic.
The nurses also usually check that your child has had:
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something to drink
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something to eat or some milk
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a pee
This can help the nurses see if your child has recovered from the sedative drugs.
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.
Before your child’s PET-CT scan
Your child has an injection of the radioactive drug (radioactive tracer) through a small thin tube (cannula) in their hand or arm. This happens up to 90 minutes before the scan. Your child then needs to rest until they have the scan.
How does your child have a PET-CT scan?
Many young children have a or to help them lie still on the couch for the scan.
After the PET-CT scan
After the PET-CT scan your child’s nurse will look after them closely when they return and take regular measurements. This is so they 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 usually check that your child has had:
- something to drink
- something to eat or some milk
- a pee
This can help the nurses check that 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.
The PET scan uses a mildly radioactive drug to show up areas of the body where cells are more active than normal.
Before your child’s PET scan
Your child has an injection of the radioactive drug (radioactive tracer) through a in their hand or arm. This happens usually 1 hour before the scan. Your child then needs to rest until they have the scan.
How does your child have a PET scan?
Many young children have a or to help them lie still on the couch for 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 nurse also usually checks that your child has had:
- something to drink
- something to eat or some milk
- a pee
This can help the nurses check that your child has recovered from the sedative drugs.
A specialist removes part or all of the swollen area of tissue 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 with a . This means they are asleep throughout the test and they can’t feel any pain during the procedure. If the lump isn’t in an easy to reach place your child’s team uses scans to help find the best area to biopsy.
Occasionally it might be possible to use a for a 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.
There are different tests that look for changes in the and of your child’s lymphoma cells. Genes are coded messages made of that tell our cells how to behave. Chromosomes are made of a very long strand of DNA and contain many genes. These tests are sometimes called cytogenetic or molecular studies.
Fluorescence in situ hybridisation (FISH)
FISH is a test that looks for chromosome changes in cells. It can help your child’s doctor work out which type of NHL your child has and the treatment they need.
Gene panels
More is known about the gene changes that can be seen in lymphoma cells. Doctors now commonly look for these gene changes in the DNA from your child’s lymphoma cells. This is called a gene panel.
Gene panels can help in diagnosing a type of NHL and how to best treat it.
Whole genome sequencing (WGS)
The aim of this test is to compare the DNA in their cells that don’t have cancer with the DNA in the lymphoma cells. It can look for changes (mutations) in their genes.
There are different sorts of mutations and understanding these changes might help doctors find out more information about their cancer and what treatment will work best for them.
These tests are done at specialist laboratories around the UK. They are called genomic laboratory hubs.
For this test your child’s doctor sends some lymphoma cells from the biopsy. They also send one of the following:
- blood
- saliva
- a small amount of skin (skin biopsy)
Getting your child’s test results
You should get your child's results within 1 or 2 weeks. But some more complex tests such as looking for changes (mutations) in your child's can take longer.
Waiting for test results can be a very worrying time. You might have contact details for a children’s cancer specialist nurse also known as a CNS. You can contact them for information if you need to. It can help to talk to a close friend or relative about how you feel.
You can also contact the Cancer Research UK information nurses for support on freephone 0808 800 4040. The lines are open from 9am to 5pm, Monday to Friday
Types of NHL in children
There are many different types of NHL. Doctors put them into groups based on how fast they grow or the type of white blood cell (lymphocyte) that it affects.
One way of grouping NHL is by the type of lymphocyte affected. These can be B cells or T cells. Most children have B cell NHL.
Other less common types of B cell lymphoma include:
- diffuse large B cell lymphoma (DLBCL)
- primary mediastinal B cell lymphoma
Rare types include:
- paediatric type follicular lymphoma
- marginal zone lymphoma
Lymphoblastic lymphomas are lymphomas that come from very young (immature) lymphocytes. The most common is T cell lymphoblastic lymphoma. B cell lymphoblastic lymphoma is rare.
Peripheral T cell lymphomas (PTCL) are lymphomas that come from developed (mature) T cell lymphocytes. The most common is anaplastic large cell lymphoma (ALCL). Other PTCL’s are very rare.
Each type of lymphoma has its own treatment.
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.
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 .
There are 4 stages to childhood NHL. Stage 1 is an early stage and stage 4 is advanced stage.
In general 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
Treatment
There are successful treatments for all stages of NHL. Around 90 out of 100 children (around 90%) with non-Hodgkin lymphoma in the UK survive for 5 years or more after they are diagnosed.
Your child’s doctor will talk with you about the treatment plan. Treatment depends on many factors including:
- the stage
- the type of lymphoma
- your child’s age
- how well your child is at diagnosis
Types of treatment
is the main treatment for children with NHL. Children usually have a combination of chemotherapy drugs and .
Some children with B cell lymphoma have treatment with a called rituximab. Rituximab targets a protein called CD20 on the surface of the lymphoma cells. Rituximab sticks to all the CD20 proteins it finds. Then the cells of the pick out the marked cells and kills them.
Some children might have radiotherapy, but this is very rare. Radiotherapy is not part of for any type of NHL in children.
Treatment for NHL that is not responding to treatment or has come back
Your child usually has more chemotherapy. These may be with some of the same drugs as before or new ones.
Some children have high dose chemotherapy treatment, followed by a .
Other treatments you doctor might recommend include one or more of the following:
targeted cancer drugs immunotherapy CAR T-cell therapy - treatment as part of a
clinical trial
Side effects of treatment
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
If your child is having other treatment they might have side effects specific to that treatment.
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 that can help. Your specialist team will be able to discuss with you any that maybe helpful.
Long term side effects
Most treatment side effects are temporary and disappear once treatment is over.
But for some people treatment 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
- getting another cancer
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:
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how they are recovering
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their development
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if they are having any problems following treatment
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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 doctor or specialist nurse. Alongside their general health check, your child might have discussions around:
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emotional and mental wellbeing
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employment
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fertility
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second cancers
The long term follow up service can make referrals to other professionals when needed.
Clinical trials
Some children have their NHL treatment as part of a clinical trial. Researchers in the UK and around the world are always looking for new 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. We have a discussion forum called Cancer Chat. It 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
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 and Young People's Cancer Association (CCLG)
The Children and Young People's Cancer Association provide information on all aspects of childhood cancer. They have information and videos on childhood NHL.
Young Lives vs Cancer
Young Lives vs Cancer 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.
Future Fertility Programme Oxford
This programme 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.
