Hodgkin lymphoma

In most people that develop Hodgkin lymphoma, no cause is found. Some factors, such as infection with the Epstein-Barr virus (EBV) that causes glandular fever; having a medical condition or treatment that wakens your immune system, can play a part in developing Hodgkin lymphoma during childhood. Very rarely, more than one member of a family may develop Hodgkin lymphoma but it is not inherited from parents and you cannot catch it from another person.

The first sign of Hodgkin lymphoma is usually a painless swelling of one gland, or a group of lymph glands, which continues for some weeks or even months.

Lymphomas can start anywhere in the lymphatic system, but Hodgkin lymphoma is most likely to start in the lymph nodes in the neck causing swelling above the collar bone, under the armpits, in the chest or further down in the abdomen or groin. Glands can swell in these areas as part of the body’s response to any infection.

If glands in the chest are affected, this can cause a cough or breathlessness.

Sometimes, a child with Hodgkin lymphoma may have a high temperature (fever), night sweats, weight loss, or itchy skin.

As lymph glands can swell for lots of reasons, a biopsy is done to find the cause. Part, or all, of a swollen lymph gland is removed so that the cells can be examined in a laboratory. This is a small operation usually done under general anaesthetic.

If Hodgkin lymphoma is diagnosed after the biopsy, further tests are carried out to find out the exact size and position of the lymphoma, and to see whether it has spread beyond the original area. These tests include x-rays, blood tests, CT, MRI, and PET scans. 

The tests that are carried out are called staging tests. Any tests and investigations that your child needs will be explained to you. Our section on children’s cancers gives details of what the tests and scans involve.

The stage of Hodgkin lymphoma describes the size and position of the cancer and whether it has spread. Staging is very important because this guides how much treatment the child needs. The staging system for Hodgkin lymphoma is as follows:

• Stage 1 - one group of lymph nodes is affected and the lymphoma is only on one side of the diaphragm (the sheet of muscle under the lungs that controls breathing)
• Stage 2 - two or more groups of lymph nodes are affected, but they are only on one side of the diaphragm.
• Stage 3 - the lymphoma is in lymph nodes both above and below the diaphragm.
• Stage 4 - the lymphoma has spread outside the lymph nodes to other organs such as the liver, lungs or bone marrow.

As well as giving each stage a number, doctors also use a letter code - either A, B, or E:

• A - means your child has no symptoms.
• B - means your child has one or more of the following symptoms: a fever, night sweats or significant weight loss.
• E - means that the lymphoma has grown from the lymph gland to tissue outside the lymph nodes (extranodal tissue).

Treatment for Hodgkin lymphoma has a very good success rate and about 90% of children are cured. The main treatment for Hodgkin lymphoma is chemotherapy. Some children will also need radiotherapy. Your child’s treatment will depend on the stage of the disease. Your child’s doctor will discuss the treatment options with you.

Chemotherapy is the use of anti-cancer drugs to destroy cancer cells. All children receive chemotherapy. The length of treatment depends on the stage of the disease.

Radiotherapy is needed in less than half of children. Usually, two cycles of chemotherapy are given and then a PET scan is done. If the PET scan is clear, then radiotherapy is usually not needed.

About 90% of children who develop Hodgkin lymphoma are cured. 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.

This is a rare type of Hodgkin lymphoma that affects around 5% of patients. LPHL usually grows at a slower rate than classical Hodgkin lymphoma and normally requires less intensive treatment. Young people with LPHL may have a single swollen gland or group of swollen glands in one area only, such as the neck or groin. The swollen gland often grows very slowly and may be present for many months before a biopsy and diagnosis happens. The biopsy and staging tests will be carried out as with classical Hodgkin lymphoma. The treatment given will depend on the stage of the disease.

LPHL is usually treated with surgery or low-dose chemotherapy. It may return many years after treatment and further treatment may be required, but it is rarely a life-threatening condition. In rare cases, patients have advanced LPHL and receive more intensive chemotherapy. There is also a link between LPHL and developing a more aggressive non-Hodgkin lymphoma.

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.