Hodgkin lymphoma

The most common symptom of Hodgkin lymphoma is a lump, where a lymph node is swollen. This is usually in the neck, armpit or groin. But other areas of lymph nodes can be affected and cause symptoms too. The lump is not usually painful, but some people may find that it aches.

Other symptoms may include:

• heavy drenching sweats, especially at night
• unexplained high temperatures
• unexplained weight loss
• tiredness
• a cough or breathlessness
• an itch all over the body that doesn’t go away.

Most of these symptoms can also be caused by other illnesses. For example, swollen lymph nodes, high temperatures and sweats may be caused by an infection. But if you have any of these symptoms or are worried about Hodgkin lymphoma, go to see your GP. If they think you could have Hodgkin lymphoma, they can arrange tests or arrange for you to see a specialist doctor

We don't know what causes Hodgkin lymphoma, but research is going on to try to find out. Remember that nothing you’ve done has caused it.

Hodgkin lymphoma is not infectious and cannot be passed from person to person.

Knowing the extent of the lymphoma helps your doctor plan the right treatment. This is called staging.

Your doctor will also ask you about any symptoms you have. All this information helps doctors plan the right treatment for you.

Staging of lymphoma can sometimes be complicated. Your doctor or specialist nurse will explain what stage you have.

The stage of a lymphoma is usually described using numbers from 1 to 4. Stages 1 and 2 are sometimes called early stage (limited or localised lymphoma). Stages 3 and 4 are sometimes called advanced lymphoma. In some situations, stage 2 lymphoma that is large (bulky – see below) is treated as advanced disease.

Stage 1

The lymphoma is either:

• in a single lymph node, one group of lymph nodes, or in one organ of the lymphatic system, such as the tonsils
• or in another part of the body outside the lymph system (extra-nodal – see below).

Stage 2

The lymphoma is either:

• in two or more groups of lymph nodes
• or in another part of the body (extra-nodal) and in one group of lymph nodes.

For both these, the sites of lymphoma are on the same side of the diaphragm – either above or below it. The diaphragm is the sheet of muscle underneath the lungs that separates the chest from the tummy (abdomen).

Stage 3

There are areas of lymphoma above and below the diaphragm.

Stage 4

There are areas of lymphoma outside and separate from the lymphatic system. For example, this could be in organs such as the bone marrow, lungs or liver.

Extra-nodal lymphoma

Lymphoma is sometimes found in parts of the body outside the lymph nodes. This is called extra-nodal lymphoma. Extra-nodal sites include the liver, lungs, spinal cord and bone marrow.

Extra-nodal lymphoma is described by adding the letter E (for extra-nodal) after the stage number. For example, the lymphoma may be described as 1E.

If you have extra-nodal lymphoma, your doctor can explain to you how this affects the stage.
 
Bulky disease

This term is used to describe:

• an area of lymphoma that is 10cm or more in diameter
• a tumour in the centre of your chest (mediastinum) that is at least a third of the width of your chest.

The letter X may be added after the stage number. For example, the lymphoma may be described as 1X.
 
B symptoms

Sometimes the letter B is added after the stage number. For example, the lymphoma may be described as stage 1B. This is used to show if you have any symptoms that doctors call B symptoms. The B symptoms are:

• heavy drenching night sweats
• unexplained high temperatures
• unexplained weight loss.

If you have any B symptoms, it usually means the lymphoma is more advanced. If you do not have any of these symptoms, the letter A is used instead, for example stage 1A.

Before you start treatment, your lymphoma doctor or nurse will talk to you about your treatment plan. Your lymphoma doctor may be:

• a haematologist (a doctor who treats blood disorders)
• an oncologist (a doctor who treats cancer).

The main treatments for Hodgkin lymphoma are chemotherapy and radiotherapy. The treatment you have depends on:

• the results of your tests
• which parts of your body are affected
• how much lymphoma there is in your body (the stage of the lymphoma).

Your doctor or nurse may talk to you about the stage of the lymphoma. This is a way of describing how many areas of your body are affected by lymphoma and where these areas are. 

Treatment for Hodgkin lymphoma has a very good success rate. Most teenagers and young adults are cured. But some treatments can cause long-term or late effects. This can include changes to your fertility being able to father a child or get pregnant. Your lymphoma doctor or nurse should talk to you about this before you start treatment. If your fertility could be affected, you may be able to have treatment to preserve your fertility. We have more information about fertility and having fertility preservation.

Doctors are working all the time to:

• improve cancer treatments
• reduce the side effects of treatment.

They do this through research called clinical trials. Your lymphoma doctor may talk to you about having your treatment as part of a clinical trial. We have more information about clinical trials.

Chemotherapy is a treatment that uses anti-cancer drugs to destroy cancer cells. It is the main treatment for lymphoma.

Most people have chemotherapy as an outpatient. The drugs are usually given into a vein (intravenously) or as tablets.

You usually have a combination of two or more chemotherapy drugs. There are different combinations of chemotherapy drugs that work well for Hodgkin lymphoma. Your lymphoma doctor will choose the combination that is best for you. 

People often also have a steroid drug with chemotherapy. The most common one is a tablet called prednisolone. Steroids are an important part of the treatment.

Your course of chemotherapy may last several months. During this time, you have regular check-ups at the hospital.

Side effects of chemotherapy

Different chemotherapy drugs cause different side effects. Some people only have a few side effects and others have more. Everyone is different.

Most side effects are short-term (temporary) and slowly go away after treatment stops.

The most common short-term side effects are:

• risk of getting an infection
• losing your hair
• feeling sick (nausea)
• tiredness (fatigue).

Radiotherapy treats cancer by using high-energy rays to destroy cancer cells. It only treats the area of the body that the beams are aimed at. A doctor who specialises in radiotherapy plans your treatment. They are called a clinical oncologist. A person who gives radiotherapy is called a radiographer.

People with Hodgkin lymphoma often have radiotherapy after chemotherapy. Some people have it to treat an area of the body that is still affected by the lymphoma. But you may also have it even if there are no signs of lymphoma after your chemotherapy. This is because radiotherapy helps reduce the risk of lymphoma coming back again.

Before your first radiotherapy treatment, you have your treatment planned. This happens in the radiotherapy department. You have a CT scan or x-rays. The radiographer may also make some small marks on your skin. These help them make sure you are in the right position for each treatment. They usually use permanent marks (like tattoos). The marks are very small, and they will only do them with your permission. It may be a little uncomfortable while they are making the marks.

If you are having radiotherapy to your neck, you may need to wear a mask during each treatment. The mask is made for you before you have treatment. 

You go to the hospital radiotherapy department to have treatment. You usually have radiotherapy every day from Monday to Friday, with a rest at the weekend. Your course of radiotherapy may last for a few weeks, but each daily treatment only takes a few minutes.

During treatment, you need to lie still. You are left on your own in the room, but only for a few minutes. You can talk to the radiographer, who watches you from the next room.

Side effects of radiotherapy

Radiotherapy is not painful, and you cannot see or feel the treatment when it is being given. You may start feeling tired after having a few treatments. Your skin may also get red and sore in the areas being treated. Other side effects depend on the area of your body being treated. For example, radiotherapy near your neck might give you a sore throat. Your doctor or nurse can tell you more about the side effects that you might have.

Always tell your doctor, nurse or radiographer about any side effects. They will do their best to help make things easier.

More information about radiotherapy side effects

Most people are cured with standard chemotherapy and radiotherapy treatment, and do not need high-dose treatment with stem cell support. But some people need bigger doses of chemotherapy, to improve their chances of being cured. You may be offered high-dose treatment if:

• the lymphoma doesn’t go away with standard treatment
• the lymphoma comes back after standard treatment (called recurrent or relapsed lymphoma).

If standard treatment was not enough, high doses of chemotherapy may kill the lymphoma cells. But high-dose treatment also destroys the stem cells in your bone marrow (spongy material in the middle of bones). Because of this, after the treatment you have stem cell support to help you recover. Without this, it could take weeks or even months for your body to start making new stem cells again.

What are stem cells?

Stem cells are blood cells at the earliest stage of development. All of our blood cells develop from stem cells in the bone marrow. When they are fully developed, they go into the bloodstream.

Blood cells do not live long. The bone marrow normally makes millions of new blood cells every day to replace blood cells as they are needed.

How stem cell support works

Before you have high-dose treatment, some of your stem cells are collected and stored. You can normally have them collected as a day patient.

The first part of collecting stem cells from the blood is making them move from the bone marrow into the blood. To do this, you have daily injections under the skin. The injections are of a drug called a growth factor. This stimulates your bone marrow to make lots of stem cells. These travel from your bone marrow into your blood.

When there are enough stem cells in your blood, they can be collected. This takes about 3 to 4 hours. You lie down on a couch, and a nurse puts a short, thin tube (cannula) into a vein in each arm. If you have a central line, they can use that instead. Each cannula is connected by tubing to a machine called a cell separator. Some of your blood goes from one arm through the tubing into the cell separator. Then it is returned to you through the cannula in your other arm.

The cell separator spins as the blood goes through it. This is to separate out the stem cells, which are collected in a bag. When it has collected enough stem cells, you can go home. Your stem cells are carefully frozen and stored until you need them.

A few weeks later, you go into hospital to have the high-dose treatment. The aim is to remove any remaining lymphoma cells.

A few days later, your stem cells are given back to you through a drip (infusion). Your stem cells travel to your bone marrow. After a few weeks, your bone marrow starts to make new blood cells again. This helps you recover from the side effects of the high doses of chemotherapy.

You usually stay in hospital to have high-dose treatment and stem cell support. The treatment may only last from one to a few days, but you will probably be in hospital for a few weeks. This is because it can take 2 to 3 weeks for your body to start to start making new blood cells again. Until your bone marrow recovers, you are at a high risk of getting an infection, so you need to stay in hospital.

More information about high-dose treatment with stem cell support

After treatment, you have regular check-ups with your lymphoma team at the outpatient clinic. This is a good time to ask any questions or talk about anything that is worrying you.

Your team will explain:

• how often you will have these check-ups
• possible signs of the lymphoma returning that you should be aware of
• any possible late effects of treatment.

They may give you and your GP a letter with this information and a list of the treatments you have had. This is called a treatment summary.

Your lymphoma doctor or nurse will also tell you about things you can do to help your recovery. These include:

• not smoking
• having a healthy diet
• doing regular exercise.

This will also help to prevent late effects of treatment and keep your body healthy.

If you notice any new symptoms between appointments, contact your doctor or nurse for advice.