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Non-Hodgkin lymphoma

Lymphoma is a cancer of lymphocytes, which are a type of white blood cell. Lymphocytes are part of the immune system that help our bodies fight infection. There are two main types of lymphoma: Hodgkin lymphoma and Non-Hodgkin lymphoma.

Non-Hodgkin lymphoma can start anywhere in the lymphatic system. The lymphatic system is a network of vessels, lymph glands and organs.

Non-Hodgkin lymphoma occurs more often in older children than in younger children.

There are three main types of non-Hodgkin lymphoma that affect children. A different type of lymphoma that occurs in children is called Hodgkin lymphoma.

Lymphoblastic lymphoma

Lymphoblastic lymphoma affects cells called lymphocytes. Generally the cancer arises in a particular subgroup of lymphocytes called T cells. It can start in the thymus (the organ in the chest that stores and regulates lymphocytes) and lymph nodes in the neck and chest. Lymphoblastic lymphoma can spread quickly to other parts of the body.

Burkitt lymphoma

Burkitt lymphoma is also a cancer of lymphocytes- but in a different subtype; B cells. and often starts as a tumour in the belly. It can also spread quickly to other parts of the body.

Large cell lymphoma

Large cell lymphoma can arise in either in B cells or T cells anywhere in the body. It also can spread  to other parts of the body.

 

Chance of a cure

One of your biggest concerns on learning your child has cancer may be about their chance of being cured.

Due to major advances in treatment, most children treated for cancer now survive into adulthood. Children diagnosed with cancer between 2004 and 2012 have a 5-year survival rate of 85%. In the 1980s, the 5-year survival rate for all cancers was about 73%.1

Talk to your child’s doctor about your child’s diagnosis, treatments and long-term survival. Long-term survival is also called the outlook or prognosis. It on depends several things, including:

  • age of your child at diagnosis
  • extent or stage of the cancer
  • how the cancer cells look under a microscope (the shape, function and structure of the cells)
  • how the cancer responds to treatment
  • cancer or tumour biology, which includes
    • the patterns of the cancer cells
    • how different the cancer cells are from normal cells
    • how fast the cancer cells are growing.

To learn more about survival for non-Hodgkin lymphoma in children, visit Australian Cancer Childhood Statistics Online.

References

[1] https://cancerqld.blob.core.windows.net/content/docs/Childhood-Cancer-in-Australia-1983-2015.pdf

 

Clinical trials

It’s possible that your child may be able to be part of a clinical trial. Clinical trials are research investigations to test new treatments, interventions or tests, or as a way to prevent, detect, treat, or manage various diseases or medical conditions. The patients involved in clinical trials are volunteers.1

With regard to cancer, researchers run clinical trials to test new ways to:

  • treat cancer
  • find and diagnose cancer
  • manage cancer symptoms and treatment side effects.

If a trial is available, taking part in one will be entirely the your decision.

It is important to note that any new treatments are strictly regulated, and must be approved before they can be used in a clinical trial. Your child’s doctor will explain everything about the trial and give you detailed written information. If you wish your child to be part of a trial, you will need to give permission.

Participating in a clinical trial may or may not directly benefit your child. However, the results of clinical trials today may help children with cancer in the future. If you are interested in participating in a clinical trial, ask your child’s doctor if there are any suitable trials for your child.

See Clinical trials and research for more information. 

References

[1] https://www.australianclinicaltrials.gov.au/what-clinical-trial

 

Diagnosis

When your child is diagnosed with cancer, it can feel overwhelming. This phase involves finding out if your child has cancer, and determining the type of cancer they have. Cancer in children can be difficult to diagnose, as many symptoms are similar to those caused by less serious conditions, or injuries. This means that your child will need multiple tests and medical appointments before you receive confirmation that your child has cancer.

If your doctor thinks your child has non-Hodgkin lymphoma, your child may have the following tests:

  • medical history and physical exam
  • blood tests
  • medical imaging, such as:
    • chest X-ray
    • ultrasound
    • computed tomography (CT) scan
    • magnetic resonance imaging (MRI)
    • positron emission tomography (PET) scan
  • biopsy of the cancer
  • lumbar puncture (spinal tap)
  • Collection of associated fluid produced by the lymphoma- paracentesis or thoracentesis (a thin, hollow needle collects fluid from either the belly or chest cavity to examine under a microscope)
  • bone marrow aspiration and biopsy.

Our section, How is cancer diagnosed? explains these tests in more detail.

Staging

Doctors use staging to describe how much the cancer has grown. Some of the tests for non-Hodgkin lymphoma will also help to stage the tumour. Staging measures:

  • where the tumour is
  • how big the tumour is
  • what nearby organs it affects
  • if the cancer has spread to other parts of the body.

Your doctor will use this information to choose the best way to treat the disease. Staging will also give the doctor an idea of how well these treatments are likely to work (prognosis). How doctors assess the stage and extent of disease varies. They often describe non-Hodgkin lymphoma in four stages:

  • Stage I – the lymphoma is either a single tumour (not in the lymph nodes) or is in the lymph nodes in a single part of the body. The lymphoma is not in the chest or belly.
  • Stage II – the lymphoma is not in the chest, and is one of the following:
    • a single tumour, and in nearby lymph nodes in one part of the body
    • more than one tumour and/or involves more than one set of lymph nodes on the same side of the body. These can be either both above or both below the diaphragm, which separates the chest and the abdomen.
    • in the digestive tract (e.g. the intestines or stomach) and doctors can remove it during surgery. Lymph nodes may or may not also have lymphoma cells.
  • Stage III – the lymphoma:
    • started in the chest
    • started in the belly but has spread too far for doctors to completely remove with surgery
    • is next to the spine (and may also be in other places)
    • is more than one tumour or occurs in more than one set of lymph nodes on both sides of the diaphragm (both above and below)
  • Stage IV – the lymphoma is in the brain, spinal cord or bone marrow when doctors first diagnose it. If cancer cells make up more than 25% of the bone marrow, Stage IV non-Hodgkin lymphoma may be reclassified as acute lymphocytic leukaemia.

 

Risk factors

A risk factor is anything that increases a person’s chance of getting a certain condition or disease. Researchers know about some risk factors that increase the chance of developing cancer. However, for most children with cancer, the cause is unknown.

What we do know is that if a child develops cancer, it’s not because of something they, or their parents did to cause it. No one is to blame if a child develops cancer.

Even if your child has a risk factor, it doesn’t mean they will develop cancer. Many children with a risk factor will never develop cancer. Other children with cancer may have had no known risk factors. Even if a child with a risk factor develops cancer, the risk factor may not have had much to do with it.

Researchers don’t completely understand what causes non-Hodgkin lymphoma. However, some things are linked to a higher chance of getting non-Hodgkin lymphoma.

Genetic conditions

People with certain genetic conditions that affect the immune system have a higher chance of getting non-Hodgkin lymphoma. These conditions include:

  • Wiskott–Aldrich syndrome
  • severe combined immunodeficiency syndrome (SCID)
  • ataxia-telangiectasia
  • common variable immunodeficiency
  • Bloom syndrome
  • X-linked lymphoproliferative syndrome.

If your child has one of these genetic conditions, they will need specific care. Your health care team will talk to you about which ongoing tests your child will need.

Childhood cancers that are linked to genetic conditions may also affect the risk for other family members. You can ask your child's treatment team if you or your family should get genetic counselling.

To learn more about genetic conditions, see the children's cancer glossary or the Centre for Genetics Education.

Exposure to radiation

High doses of radiation can increase a child’s risk of developing non-Hodgkin lymphoma. This includes children who were X-rayed before birth.

Children who have had radiation therapy (radiotherapy) to treat cancer also have a slightly higher chance of developing non-Hodgkin lymphoma later in life.

Certain virus infections

People who have had an Epstein–Barr virus infection are more likely to develop Burkitt non-Hodgkin lymphoma, especially if they have a weakened immune system. Other names for the Epstein–Barr virus are glandular fever, infectious mononucleosis or 'mono'.

Children who have had an organ transplant and take medicines that weaken their immune system also have a higher risk.

People with HIV also have a higher chance of getting non-Hodgkin lymphoma.

Other factors

Non-Hodgkin lymphoma affects more males than females.

 

Support and more information

A diagnosis of cancer in a child is difficult for all involved. It is normal for you and your family to feel overwhelmed, scared, anxious or angry.

If or others around you are having trouble coping, make sure you speak to your child’s treatment team. It’s very likely they have helped and supported many other families who have been through what you’re currently going through. Sometimes just letting other people know how you’re feeling helps you feel less alone. If you feel supported, then you will feel more able to support your child.

Most children’s hospitals will allocate a social worker to each family to provide support throughout treatment. If you need support, contact your hospital-based social worker to let them know how you’re feeling and to see what support can be made available to you and your family, including music therapists, play therapists or education support staff.

The following webpages and organisations also offer support and/or extra information for children with cancer and their families:

  • Living with children’s cancer has information about physical, emotional and practical issues during and after diagnosis and treatment. 
  • Organisations that can provide support and information.
  • Redkite is a national organisation that provides emotional support, financial assistance, information and resources to families who have a child with cancer. You can reach them through their support line 1800 733 548 (1800 REDKITE), which is open (9am-7pm AEST), email support@redkite.org.au or live chat on www.redkite.org.au
  • Canteen provides a service called Canteen Connect, an online community for young people aged 12-25 dealing with their own or a close family member’s cancer, and Parent Connect, an online community with resources, information and peer support on parenting through cancer. Online counselling is available seven days a week, including evenings. Visit https://canteenconnect.org or call 1800 835 932.
  • Lymphoma Australia supports children with non-Hodgkin lymphoma as well as their families. 
  • The Cancer Council in your state or territory can give you: 
    • general information about cancer 
    • information on resources and support groups in your area. 
  • You can call the Cancer Council Helpline from anywhere in Australia on 13 11 20.
  • Any of the major children’s hospitals and networks in your state or territory can provide information about childhood cancer.

For more information about Hodgkin disease, see:

Note that information from international organisations may not always apply to children in Australia.

 

Symptoms

There are conditions other than cancer that can cause the symptoms below. If your child has any of these symptoms and you are worried, visit to your child’s doctor. The earlier cancer is found, the better.

Symptoms of non-Hodgkin lymphoma may include:  

  • fever
  • night sweats
  • unexplained weight loss
  • enlarged lymph nodes, usually felt as painless lumps under the skin in the neck, underarm or groin
  • swollen belly
  • tiredness
  • loss of appetite, or feeling full after only a small amount of food
  • itchy red or purple lumps under the skin (if the lymphoma has spread to the skin itself)
  • coughing or trouble breathing (a swollen thymus or lymph nodes in the chest can press on the windpipe)
  • problems going to the toilet (if the lymphoma presses on the bladder or bowel or spinal cord)
  • headaches, or problems with seeing or talking (if the lymphoma presses on the brain)

 

Treatment

Your team of doctors, called a multidisciplinary team (MDT), will care for and treat your child, and will ensure that all your child’s needs are considered while they have cancer treatment. The section called The treatment team has further information about this.

Treatment for non-Hodgkin lymphoma depends on:

  • the age of your child
  • the stage or extent of the cancer
  • the sub-type of Non-Hodgkin’s Lymphoma
  • other factors.

Doctors will suggest treatments based on your child’s situation. Treatment may involve one or more of the following:

  • surgery
  • chemotherapy
  • radiation therapy
  • targeted therapy
  • stem cell transplant
  • Immunotherapy

Surgery

Generally, surgery is not used to treat non-Hodgkin lymphoma. However, surgery may be used to remove tumours in certain types of non-Hodgkin lymphoma.  

Your child might have surgery to insert a venous access device into a large blood vessel, usually in their chest or upper arm. This is also called a central venous catheter, portacath or central venous line. This device is a small plastic tube that either sticks out of the body or sits just under the skin. It allows medicines, including chemotherapy, to be given intravenously. Your doctor can also take blood samples for testing.

See How is cancer treated - surgery for more detail about cancer surgery.