Non-Hodgkin lymphoma (NHL) in children
Non-Hodgkin lymphoma is a cancer of the lymphatic system. About 80 children of all ages develop non-Hodgkin lymphoma (NHL) in the UK each year. It is more common in boys than girls.
More children than ever are surviving childhood cancer. There are new and better drugs and treatments. But it remains devastating to hear that your child has cancer, and at times it can feel overwhelming. There are many healthcare professionals and support organisations to help you through this difficult time.
Understanding more about the cancer your child has and the treatments that may be used can often help parents to cope. We hope you find the information here helpful. Your child's specialist will give you more detailed information. If you have any questions it’s important to ask the specialist doctor or nurse who knows your child’s individual situation.
Non-Hodgkin lymphoma (NHL)
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Learning more about the lymphatic system can help you understand NHL better.
The lymphatic system is part of the immune system - 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. The lymph nodes are connected by a network of tiny lymphatic vessels.
Lymph nodes are also known as lymph glands, and the ones that you’re 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 20-50 nodes.
Cancers that start in the lymphatic system are called lymphomas. There are two main types of lymphoma:
Although they’re both types of lymphoma, there are differences between them, which means they need different treatment.
There are two main types of NHL. B-cell NHL usually involves the lymph nodes in the abdomen and intestines, but may involve nodes in the head and neck. T-cell NHL usually affects lymph nodes in the chest.
Occasionally, NHL can develop in unusual places outside the lymph nodes. This is called extranodal lymphoma.
We don’t know what causes NHL but there is research going on all the time to try to find out. It’s important to remember that nothing you have done has caused the cancer.
The first sign of NHL is usually a lump somewhere in the body, which is caused by swollen lymph nodes. This can cause different symptoms, depending on where the swollen lymph nodes are. If glands in the abdomen are affected, this may cause a feeling of being full after meals and some stomach pain. Other symptoms of NHL include a high temperature (fever), tiredness, weight loss, and loss of appetite. In a few children, 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 NHL. 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. We have more information 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 NHL is below:
One group of lymph nodes is affected, or there's a single extranodal tumour.
Two or more groups of nodes are affected, or there is a single extranodal tumour that 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, which plays a large part in our breathing).
There's 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.
Treatment for NHL has a very good success rate and many people are cured. Chemotherapy is the most important treatment for children with NHL. Chemotherapy is the use of anti-cancer (cytotoxic) drugs to destroy cancer cells.
It's 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 about two years. Your child’s doctor will discuss the treatment options with you.
NHL can 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
Side effects of treatment
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Treatment for NHL can cause different side effects, and your child’s doctor will discuss these with you before the treatment starts. Any possible side effects will depend on the part of the body that's being treated and what treatment is being used. Some children have just a few side effects, while others experience more. Side effects can include:
feeling sick (nausea) and vomiting
a sore mouth
temporary hair loss
a low blood count leading to an increased risk of infection bruising and bleeding (sometimes blood and/or platelet transfusions are needed)
Months or years later some children will develop late side effects from the treatment they have had. These include a possible reduction in bone growth, a change in the way the heart, lungs and kidneys 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. Older 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 and will keep a close eye on possible long-term side effects in follow-up clinics. We have more detailed information about these late side effects.
Many children have their treatment as part of a clinical research trial. Cancer research trials are carried out to try to find new and better treatments for cancer. Clinical trials mean there are now better results for curing children’s cancers compared with just a few years ago. 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 finished, the doctors will monitor your child closely with regular appointments in the hospital outpatient department.
Over 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's 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.
Your child may have a variety of powerful emotions throughout their experience of cancer. We have more information about living with cancer, including some of the emotional effects a child's cancer diagnosis can have on the family.
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.
Offers practical support to children and young people aged 21 and under with cancer or leukaemia, and to their families.
A national charity that provides care and support to patients, their families and carers through the diagnosis and treatment of leukaemia or an allied blood disorder.
Provides information and emotional support to anyone with lymphatic cancer, their families, carers and friends.
This section has been compiled using information from a number of reliable sources, including:
Voute PA, et al. Cancer in Children: Clinical Management. 5th edition. 2005. Oxford University Press.
Pinkerton R, et al. Evidence-based paediatric oncology. 2nd edition. 2007. Blackwell Publishing.
Tai E, et al. Differences in Non-Hodgkin Lymphoma Survival Between Young Adults and Children. Archives of Pediatric Adolescent Medicine. 2010. 164(3):218-224.
Nandagopal, et al. Endocrine Late Effects of Childhood Cancer Therapy: A Report from the Children’s Oncology Group. Horm Res. 2008. 69:65–74.
With thanks to Dr Amrana Qureshi, Paediatric Haematologist, and the people affected by cancer who reviewed this edition.
We worked with the Children's Cancer and Leukaemia Group (CCLG) to write our information about children's cancer.