Non-Hodgkin lymphoma

One of the most common symptoms of NHL 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 
• tummy pain 
• feeling full and having no appetite 
• 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 NHL, go to see your GP. If they think you could have NHL, they can arrange tests or arrange for you to see a specialist doctor.  

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

NHL 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. Lymphomas are also grouped as either low grade or high grade.

The stage of lymphoma describes how many areas of the body are affected by lymphoma and where these are.

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 NHL are sometimes called early stage (limited or localised lymphoma). 

Stages 3 and 4 NHL 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

The lymphoma is more widespread and may also affect 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 (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.

The staging of extra-nodal lymphoma depends on whether the lymphoma:

• started in an organ outside the lymph nodes – this is called primary extra-nodal NHL 
• or started in the lymph nodes and then spread somewhere else.

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

Bulky disease

If an area of lymphoma is large, it is often called bulky disease. 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 doctors call B symptoms. These 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.

Grades of non-Hodgkin lymphoma

Lymphomas are also often grouped as either low grade or high grade. The grade of the lymphoma is also an important factor in your treatment plan.

Low-grade lymphomas
These grow very slowly and are sometimes called indolent lymphomas. They may need little or no treatment for months or possibly years. Some people will never need treatment. Follicular lymphoma (FL) is the most common type of low grade NHL.

High-grade lymphomas
These grow more quickly and are sometimes called aggressive lymphomas. They usually cause symptoms and need immediate treatment. Diffuse large B-cell lymphoma (DLBCL) is the most common type of high-grade lymphoma.

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 treatment for NHL is chemotherapy. It uses anti-cancer drugs to kill the lymphoma cells. You may also have a targeted therapy drug with the chemotherapy, such as rituximab. Some people have radiotherapy after chemotherapy treatment ends. Radiotherapy uses high-energy x-rays to kill cancer cells.  

The treatment you have depends on: 

• the type of NHL you have 
• 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 NHL has a very good success rate. Many 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. 

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. Chemotherapy is often given with a targeted therapy drug called rituximab. There is more information about this further down the page.  

You may have chemotherapy as an outpatient or during a short stay in hospital. Chemotherapy drugs are usually given into a vein (intravenously) or as tablets. 

Some people have a small amount of chemotherapy given into the cerebro-spinal fluid (CSF). This is fluid that surrounds the spinal cord and brain. It may be done during a lumbar puncture. You may have this if lymphoma has spread to your brain or there is a risk that it might. Your doctor will explain this treatment to you if you need it. 

You usually have a combination of two or more chemotherapy drugs.   

You usually 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).  

We have more information about these side effects. 

The targeted therapy drug that is most often used to treat NHL is called rituximab. 

It can be used to treat some types of B-cell NHL.  

Rituximab is a type of targeted therapy called a monoclonal antibody. These drugs work by ‘targeting’ specific proteins on the surface of cells. Rituximab locks on to a protein called CD20. This is on the surface of some lymphoma cells. This protein is also on normal white blood cells called B-lymphocytes or B-cells.  

Rituximab locks on to B-cells and triggers the body’s immune system to attack and destroy them. This means rituximab kills both the lymphoma cells and normal B-cells. But your body can replace the normal B-cells when the treatment has finished.  

Rituximab is given as a drip into a vein. You can have it as an outpatient. You usually have it with chemotherapy. When you are having rituximab, you might feel some soreness in the parts of your body where the lymphoma is. If this happens, tell your nurses. They can give you painkillers.  

You have the first rituximab treatment slowly, over a few hours. This is because some people have a reaction to rituximab. Giving it slowly reduces the chance of a reaction. You are also given medicines before each treatment to help prevent a reaction. The nurses will check you while you have the treatment.  

Signs of a reaction can include: 

• a headache 
• feeling itchy 
• feeling shaky and shivery 
• feeling breathless. 

If you don’t feel well when you are having rituximab, tell the nurses straightaway. They can stop the drip and start it again when you feel better.  

Radiotherapy treats cancer by using high-energy x-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. 

Radiotherapy can be used on its own or after chemotherapy.  

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 them 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.  

Most people who have NHL do not need a stem cell transplant (sometimes called a bone marrow transplant). But it may be used if NHL: 

• does not respond well to treatment 
• comes back (relapses) after treatment. 

Stem cells are a type of blood cell. They make all the different types of blood cells you need.  

There are two types of stem cell transplant. One uses your own stem cells (autogeneic). The other uses stem cells from someone else (a donor)(allogeneic). 

Having a stem cell transplant 

A stem cell transplant works best if you are in remission when you have it. Remission is when there are no signs of lymphoma. So, you have chemotherapy to put the lymphoma into remission before having a stem cell transplant. 

Stem cells for a transplant can come from: 

• you  
• a person (donor) who is a tissue match for you – this could be either a family member or a donor who is not related to you.  

Once you are in remission, the stem cells are collected from either your blood or the donor’s blood and stored. This is done as an outpatient.  

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 (or the donor) have daily injections under the skin. The injections are of a drug called a growth factor. This stimulates the bone marrow to make lots of stem cells. These travel from the bone marrow into the blood.  

When there are enough stem cells in the blood, they can be collected. This takes about 3 to 4 hours. A nurse puts a short, thin tube (cannula) into a vein in each arm. Each cannula is connected by tubing to a machine called a cell separator. Some of the blood goes from one arm through the tubing into the cell separator. Then it is returned through the cannula in the 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, they are carefully frozen and stored until you need them.  

A few weeks later, you go into hospital to have high-dose chemotherapy. This is sometimes called conditioning treatment. Sometimes people also have radiotherapy as part of conditioning treatment. This is done to: 

• remove any remaining lymphoma cells 
• prepare your bone marrow for the transplant.  

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

You usually stay in hospital to have a stem cell transplant. 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. 
We have more information about stem cell transplants. 

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 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.