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Macmillan and Cancerbackup merged in 2008. Together we provide free, high quality information for people affected by cancer through our publications, website and phone service. Find out more|.
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This information is about non-Hodgkin lymphoma (NHL)| in children. You may find it helpful to read it alongside the Macmillan/CCLG booklet A parent’s guide to children’s cancer|, which contains information about children's cancer, diagnosis, treatment and support services.
About 80 children of all ages develop non-Hodgkin lymphoma (NHL) in the UK each year. It is more common in boys than girls. NHL is cancer of the lymphatic system.
The lymphatic system is part of the immune system, which is the body’s natural defence against infection and disease. This is a complex system made up of the bone marrow, thymus, spleen, and lymph nodes throughout the body. These are connected by a network of tiny lymphatic vessels.
The lymphatic system
View a large copy of the diagram of the lymphatic system|
Lymph nodes are also known as lymph glands, and the ones you are most likely to notice are those in the neck, armpit and groin. The number of lymph nodes varies from one part of the body to another: in some parts there are very few, whereas under your arm there may be between 20–50 nodes.
Cancers which start in the lymphatic system are called lymphomas. There are two main types of lymphoma: Hodgkin lymphoma| and non-Hodgkin lymphoma. Although these are both types of lymphoma, there are significant differences between them, which means that the treatment is also different.
There are two main types of non-Hodgkin lymphoma. B-cell NHL usually involves the lymph nodes in the abdomen and intestines, but may involve nodes in the head and neck. The other type is T-cell NHL, which usually affects lymph nodes in the chest.
Occasionally, non-Hodgkin lymphoma can develop in unusual places outside the lymph nodes. This is called extranodal lymphoma.
The causes of NHL are largely unknown. However, children who have deficiencies of the immune system, or who have used immune-suppressing drugs for a long time, are at an increased risk of having NHL.
The first sign of NHL is usually a swelling of a group of lymph nodes somewhere in the body. The swelling is usually painless. If the glands in the chest become very large, your child may have some problems with breathing, may develop a cough and/or a puffy face and neck.
If glands in the abdomen are affected, this may cause some blockage of the bowel, in which case an operation to remove it may need to be needed. Other symptoms include a high temperature (fever), tiredness, weight loss and loss of appetite. In a few children with NHL, lymphoma cells may be found in the bone marrow, or in the fluid around the spinal cord (cerebrospinal fluid).
A variety of tests| and investigations may be needed to diagnose non-Hodgkin lymphoma. Part, or all, of a swollen lymph gland may be removed so that the cells can be examined in the laboratory (biopsy). This involves a small operation that is usually done under a general anaesthetic. Tests such as x-rays, ultrasound scans, MRI scans, CT scans, blood tests and bone marrow samples may be carried out to find out the extent of the disease. This is known as staging.
Any tests and investigations that your child needs will be explained to you. The booklet A parent’s guide to children’s cancer gives details about what the tests and scans involve.
The stage of a cancer is a term used to describe its size and whether it has spread beyond its original site. The type of treatment your child receives depends on the stage of the disease. A simplified version of the stages of non-Hodgkin lymphoma is as follows:
One group of lymph nodes is affected, or there is a single extranodal tumour.
Two or more groups of nodes are affected, or there is a single extranodal tumour which has spread to nearby lymph nodes, or there are two single extranodal tumours, but only on one side of the diaphragm (the sheet of muscle under the lungs that plays a large part in our breathing).
There is lymphoma on both sides of the diaphragm (either in two or more groups of nodes) or there are two single extranodal tumours or the lymphoma is affecting the chest.
The lymphoma has spread beyond the lymph nodes to other organs of the body, such as the bone marrow or nervous system.
Chemotherapy| is the most important treatment for children with NHL. Chemotherapy is the use of anti-cancer (cytotoxic) drugs to destroy cancer cells. It is common for a combination of drugs| to be used, and treatment may last a number of months or years.
The treatment will be planned according to your child’s particular type of NHL and the stage of the disease. B-cell NHL is treated with 4–8 courses of intensive chemotherapy. T-cell NHL is treated for around two years. Your child’s doctor will discuss the treatment options with you.
NHL may sometimes affect the brain and spinal cord. To stop this, chemotherapy may be injected directly into the fluid around the spinal cord. This is called intrathecal chemotherapy|.
Very rarely, radiotherapy| is also necessary. Radiotherapy treats cancer by using high-energy rays to destroy the cancer cells, while doing as little harm as possible to normal cells.
High-dose chemotherapy with a bone marrow transplant| is sometimes used (again very rarely) if the NHL comes back (recurs) after initial treatment.
Treatment often causes side effects, and your child’s doctor will discuss this with you before the treatment starts. Any possible side effects will depend upon the particular treatment being used and the part of the body that is being treated.
Side effects can include:
A small number of children may develop late side effects|, sometimes many years later. These include possible reduction in bone growth, a change in the way the heart and lungs work, and a small increase in the risk of developing another cancer in later life.
After treatment with chemotherapy, some children – particularly boys – may become infertile|, although this is very rare. Teenage boys, and their parents, should be aware of the option of sperm banking. In this situation, sperm can be stored for possible use in later years.
Your child’s doctor or nurse will talk to you about any possible late side effects. There is more detailed information about these late side effects in the booklet A parent’s guide to children’s cancer.
Many children have their treatment as part of a clinical research trial|. Trials aim to improve our understanding of the best way to treat an illness, usually by comparing the standard treatment with a new or modified version.
Specialist doctors carry out trials for children's cancer. If appropriate, your child's medical team will talk to you about taking part in a clinical trial and will answer any questions you have. Written information is provided to help explain things.
Taking part in a research trial is completely voluntary, and you'll be given plenty of time to decide if it's right for your child.
Once treatment has ended, the doctors will monitor your child closely, with regular appointments in the hospital outpatients department.
More than 80% of the children who get NHL recover completely. The chances of successful treatment depend on the specific type, stage and grade of lymphoma. Your child’s doctor can discuss these details with you.
If you have specific concerns about your child’s condition and treatment, it is best to discuss them with your child’s doctor, who knows the situation in detail.
As a parent, the fact that your child has cancer is one of the worst situations you can be faced with. You may have many different emotions, such as fear, guilt, sadness, anger and uncertainty. These are all normal reactions| and are part of the process that many parents go through at such a difficult time.
It's not possible to address all of the feelings that you may have here. However, the booklet A parent’s guide to children’s cancer talks about the emotional impact of caring for a child with cancer and suggests sources of help and support.
Your child may have a variety of powerful emotions throughout their experience of cancer. The parent's guide discusses this further and talks about how you can support your child|.
Our booklet Peppermint Ward| is a storybook for younger children with cancer. It looks at the issues that they and their family may face, and helps them explore their feelings.
CLIC Sargent| offers practical support to children and young people aged 21 and under with cancer or leukaemia, and to their families.
CCLG| coordinates research and care for children and their parents. There are 21 CCLG specialist centres for the treatment of childhood cancer and leukaemia, covering all areas of the UK and Ireland (there's a map of the centres| on the website). Has information about the CCLG, childhood cancer and leukaemia.
For answers, support or just a chat, call the Macmillan Support Line free (Monday to Friday, 9am-8pm)
If you have any questions about cancer, need support or just want someone to talk to, ask Macmillan.