This information has been prepared to help you understand more about Hodgkin’s lymphoma (Hodgkin’s disease). Many people feel understandably shocked and upset when they are told they have Hodgkin’s disease. This information is intended to help you understand the diagnosis and treatment of this type of cancer.
We cannot advise you about the best treatment for you. You need to discuss this with your doctors. However, we hope this information will answer some of your questions and help you think about the questions you want to ask your doctors or other health carers.
The lymphatic system
Hodgkin’s disease is cancer of the lymphatic system. The lymphatic system:
- is part of the immune system, which protects the body against disease and infection
- is made up of a network of thin tubes (lymph vessels) found all over the body
- carries a clear fluid called lymph, which originates in the tissues and is emptied into the bloodstream.
Lymph contains white blood cells called lymphocytes, which help fight infection.
A network of small, bean-shaped structures called lymph nodes (glands) are located along the lymph vessels. Lymph nodes trap germs and bacteria that cause infection. They are found in places such as the neck, chest, abdomen, groin and underarms.
When germs are trapped in the lymph nodes, the nodes become swollen. This is a sign that your body is fighting the infection. For example, the glands in your neck swell when you have a sore throat.
Other parts of the lymphatic system include:
- Spleen: found on the left side of the abdomen, under the ribs. It contains lymphocytes, filters waste products from the blood and destroys old blood cells, abnormal cells, and bacteria.
- Thymus: found inside the rib cage, behind the breastbone. It helps produce white blood cells.
- Tonsils: a collection of lymphatic tissue at the back of the throat. It traps inhaled or ingested germs.
- Bone marrow: the soft, spongy material inside bones. Bone marrow makes three types of blood cells: oxygen-carrying red cells, infection- fighting white cells, and cells called platelets, which help the blood to clot.
What is Hodgkin’s disease?
Hodgkin’s disease is a type of lymphoma, a general term for a cancer that begins in lymph tissue.
When you have Hodgkin’s disease, your lymphocytes become damaged. They grow and multiply uncontrollably which causes your lymph nodes to become enlarged and form painless lumps called tumours. As damaged lymphocytes replace normal lymphocytes, your immune system becomes less able to fight infection.
Hodgkin’s disease may occur in a single lymph node, a group of lymph nodes, or in an organ such as the liver or spleen. Sometimes, Hodgkin’s disease can appear in several parts of the body at the same time.
There are two types of lymphoma: Hodgkin’s disease (also called Hodgkin’s lymphoma) and non-Hodgkin’s lymphoma.
The difference between Hodgkin’s disease and non-Hodgkin’s lymphoma is a type of cancer cell. In Hodgkin’s disease, tumours contain large cells called Reed-Sternberg cells. These cells are not found in non-Hodgkin’s lymphoma.
How common is it?
About 170 people in NSW are diagnosed with Hodgkin’s disease every year.
It usually develops in people between the ages of 15-29 and 60-70.
What is the cause?
The causes of Hodgkin’s disease are unknown, but researchers think factors from a person’s genes and from their environment combine to cause Hodgkin’s disease.
The disease does not run in families and cannot be passed from one person to another.
What are the symptoms?
The most common first symptom of Hodgkin’s disease is a painless swollen lymph gland in your neck, under your arm, or in your groin.
Other symptoms may include:
- unexplained and regular fevers
- excessive sweating, particularly at night
- weight loss
These symptoms are common to many conditions, such as the flu or a virus. Most people with these symptoms do not have Hodgkin’s disease. However, if you have these symptoms and there is no obvious cause, such as an infection, see your general practitioner (GP).
Tests for diagnosis
Your doctor will often do a number of tests before they diagnose Hodgkin’s disease.
If the doctor suspects you have Hodgkin’s disease, you will have a physical examination. Your doctor will feel the lymph nodes in your neck, underarms or groin for signs of swelling and feel your abdomen to check for swollen organs.
A blood test may be done to check how your bone marrow, kidneys and liver are working.
A diagnosis is made by removing some tissue and examining it under a microscope. This is called a biopsy. A biopsy can be done in different ways:
Excision biopsy – The whole lymph node or part of it is removed by a surgeon while you are under a general anaesthetic. You will have some stitches afterwards, and you may be in hospital for a few days.
Needle biopsy – a needle is inserted into the lymph node to remove a small amount of tissue. Sometimes, the needle biopsy does not provide enough tissue to make a diagnosis and an excision biopsy is also needed.
The sample is sent to the laboratory for examination under a microscope. It will probably take at least a week for your biopsy test results to be ready.
If the biopsy shows you have Hodgkin’s disease, a number of other tests will be done. You may have one of these tests or a combination of several tests.
The following tests will show if the Hodgkin lymphoma has spread to other parts of your body.
Blood samples will be taken regularly to check your total number of red blood cells, white blood cells and platelets. Each type of blood cell performs a different function, such as carrying oxygen around your body (red), fighting infection (white) and helping your blood to clot (platelets).
If your blood count is low, it may mean that Hodgkin lymphoma has spread to your bone marrow.
Blood is also taken to see how well your kidneys and liver are working. These organs sometimes do not work properly if Hodgkin lymphoma is present.
An x-ray of the chest may be taken to check if the Hodgkin lymphoma has spread to the lymph nodes in your chest or to your lungs.
In this procedure a sample of bone marrow is taken to see if it contains lymphoma cells. You will lie still while you have either a general or a local anaesthetic to your pelvis (hip). A needle is inserted into your bone to remove a small piece of bone marrow.
You may feel some pressure or discomfort during the biopsy, and this can last several days. Ask a member of your health care team about pain-relieving medication if you are uncomfortable.
A CT (computerised tomography) scan uses x-ray beams to take a series of three-dimensional pictures of the inside of your body.
You may have a special dye injected into a vein before the scan. This dye shows blood supply to your organs so anything unusual can be seen more clearly. For a few seconds, the special dye may make you feel hot all over. Inform your doctor if you are allergic to iodine, fish or dyes.
The CT scan machine is large and round like a doughnut. You will lie on a table that moves in and out of the scanner. A CT scan takes 30–60 minutes. You will be able to go home when the scan is complete.
For a PET (positron emission tomography) scan, you will be injected with a radioactive glucose (sugar) solution. The PET scan detects increased amounts of radioactive glucose, which is taken up by active cancer cells.
You will be asked to sit quietly for 30–90 minutes while the glucose circulates through your body, then you will be scanned. The scanner is a confined space so let your doctor know if you are claustrophobic.
A gallium scan is an uncommon type of diagnostic test. A weak radioactive substance (gallium) is injected into a vein in your arm. Over 2–3 days, the gallium accumulates in areas of enlarged, abnormal lymph nodes, showing where lymphoma has spread.
An ultrasound uses soundwaves to create a picture of the internal organs. This test is most commonly used to help find a lymph node swelling or other lump, and to guide a needle biopsy.
A gel is spread over the skin and a small device called a transducer is passed over the area. The transducer creates soundwaves. When soundwaves meet something dense, such as an organ or tumour, they produce echoes. A computer turns the echoes into a picture on a computer screen. This painless test only takes a few minutes, so it is usually performed as an outpatient scan.
Staging Hodgkin’s disease
After the biopsy and the results of these tests, one of the following stages will be used to describe your Hodgkin’s disease:
Stage 1 – Cancer is found in only one lymph node area or in one area outside the lymph nodes.
Stage 2 – Cancer is found in two or more lymph node areas on the same side of the diaphragm (the sheet of muscle beneath the lungs).
Stage 3 – Cancer is found in the lymph nodes above and below the diaphragm.
Stage 4 – Cancer is found in the lymph nodes as well as other areas of the body, such as the liver, lungs or bones.
Your doctor may describe the stage of the cancer as either subgroup A (no symptoms) or subgroup B (symptoms such as unexplained fever, weight loss and night sweats).
Prognosis means the expected outcome of a disease.
You need to discuss your prognosis with your doctor. It is not possible for any doctor to give you a 100% accurate prediction on the course of your illness. Test results, the rate and depth of cancer growth, how you respond to treatment, and other factors such as age, fitness and your medical history are all important factors in assessing your prognosis.
Most people who receive treatment for Hodgkin’s disease achieve long-term or permanent remission, or control the disease for years. During periods of remission, you will require regular checkups. Hodgkin’s disease may relapse.
Which health professionals will I see?
You will be cared for by a range of health professionals who specialise in different aspects of your treatment. Health professionals who may care for you include:
- General practitioner (GP) – arranges the first tests to investigate your symptoms.
- Haematologist – a doctor who treats people with blood diseases.
- Medical oncologist – prescribes and coordinates targeted therapies and chemotherapy.
- Radiation oncologist – prescribed and coordinates radiotherapy.
- Nurses – support you through all stages of your cancer treatment.
- Cancer care coordinator or clinical nurse consultant (CNC) – supports patients and families throughout treatment and liaises with other staff.
- Dietician – recommends an eating plan to follow while you’re in treatment and recovery.
- Social workers, counsellors, physiotherapists and occupational therapists – link you to support service social worker, and help with emotional, physical or practical issues.
Chemotherapy and radiotherapy are the main treatments for Hodgkin lymphoma. These are often combined to improve treatment outcomes. Some people – usually those with more advanced or relapsed cases of Hodgkin lymphoma – have high-dose chemotherapy and radiotherapy with peripheral blood stem cell transplants.
Radiotherapy is the use of high-energy x-rays or electrons to kill or damage cancer cells. Radiotherapy is usually given as multiple small doses over several days or weeks.
You will lie under a machine that delivers x-rays to the cancer areas. Each session takes a few minutes, but preparation and equipment set-up can take 1-3 hours.
Chemotherapy uses cytotoxic drugs to kill or slow the growth of cancer cells. It is often used to treat early-stage lymphomas and sometimes used to treat advanced Hodgkin’s disease.
Chemotherapy is usually given through a needle inserted into a vein (intravenously). It can also be given orally in tablet form.
A common type of chemotherapy for Hodgkin’s disease is repeated on one day every two weeks. Other types of chemotherapy are given at different intervals. For example, you might have treatment for a few days and then a rest period.
During treatment you will have regular blood tests. If your white cell count is low, you may have medicines to increase the count and help protect you from infection or you may need to have your chemotherapy delayed until your white cell count has recovered.
Don’t take any other medications or vitamin supplements during chemotherapy without checking with your doctor first. They may affect how the chemotherapy works in your body.
Stem cell or bone marrow harvest and transplantation
A transplant of stem cells is sometimes used for the treatment of lymphoma — sometimes if the cancer comes back or doesn’t respond to treatment. Stem cells are early-stage cells from which other cells develop.
Most stem cells are found in the bone marrow. However, small amounts of stem cells are found in your blood (these are called peripheral stem cells). There are two types of transplants. You may receive either type, depending on your circumstances:
Autologous transplant: Your own stem cells are extracted from your body, stored, and re-injected after chemotherapy or radiotherapy treatment.
Allogeneic transplant: Stem cells are collected from a donor and injected into your body after chemotherapy or radiotherapy treatment.
Before either type of transplant, you will receive high doses of chemotherapy. This will clear your body of any remaining Hodgkin’s disease cells and your bone marrow of stem cells.
When you receive your transplant, the stem cells re-populate your bone marrow and blood cells.
Palliative treatment helps improve quality of life by alleviating the symptoms of cancer without trying to cure the disease. It is particularly important for people with advanced cancer.
Often treatment is concerned with symptom control and stopping the spread of cancer, but it can also involve the management of other physical and emotional symptoms. Treatment may include chemotherapy or medication.
After your treatment is over, you will need regular checkups with your doctor or your cancer treatment centre. Blood tests will be done to check your general health and your blood count. Regular checkups can help find a recurrence early, and this gives you the best chance of getting the disease under control.
Checkups will continue for several years but will become less frequent if you have no further problems.
Between follow-up appointments, let your doctor know immediately of any health problems.
A guide for people with cancer, their families and friends.
Understanding Hodgkin’s disease booklet