Non-Hodgkin lymphoma

We don’t know what causes NHL but there is research going on all the time to try to find out. It is 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 tummy 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. 

• Stage 1 - one group of lymph nodes is affected, or there’s a single extranodal tumour.
• Stage 2 - 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).
• Stage 3 - 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.
• Stage 4 - 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 children 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.

Often a combination of drugs is 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. Your child’s doctor will discuss the treatment options with you.

Lymphoblastic lymphoma is similar to lymphoblastic leukaemia and is treated using current leukaemia treatments which last 2-3 years.

Burkitt lymphoma and DLBCL are treated with 4–6 courses of intensive chemotherapy. Some patients will also receive rituximab, an anti-CD20 antibody that kills NHL cells by a biological method.

ALCL is treated with six courses of intensive chemotherapy.

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 uses high-energy rays to destroy cancer cells, while doing as little harm as possible to normal cells.

High-dose chemotherapy with a bone marrow transplant is sometimes used if the NHL comes back after initial treatment.

Around 80% of the children who get NHL recover completely. The chances of successful treatment depends on the specific type, stage and grade of lymphoma. Once treatment has finished, the doctors will monitor your child closely with regular appointments to be sure that the cancer has not come back and there are no complications. After a while, you will not need to visit the clinic so often.

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.

Children and Young People with Cancer - A Parent's Guide
A free booklet from CCLG containing information and support for when your child is diagnosed with cancer

Young Lives Vs Cancer
Offers practical support to children and young people with cancer or leukaemia, and to their families.

Macmillan Cancer Support
Offers support and advice to those affected by cancer.

Lymphoma Action
Provides information and emotional support to people with lymphoma and their families, carers and friends.

Blood Cancer UK
Funds research and provides information and support to those affected by blood cancers.