Lymphoma Support Ireland, Lymphoma Information

What's the cause?

Although the cause of most lymphomas is unknown, research is focused on this all the time. It is not inherited.

Lymphomas are more likely to develop in people who have taken drugs to prevent rejection following an organ transplant. It may also occur in people whose immunity has been reduced by other treatments.

In a small number of cases, working with chemicals such as insecticides and herbicides seems to increase the risk of developing lymphoma.

People who are born with conditions that affect their immune system may be more at risk of developing lymphoma later in life.

Certain viruses can contribute to the development of lymphoma, but like other cancers, it is not infectious and cannot be passed on to other people.

Diagnosing Non Hodgkin Lymphoma

Most people begin by visiting their doctor. If your doctor has concerns about you, he or she will refer you to a hospital for further tests. At the hospital the doctor will ask you questions about your health before doing a physical examination. A blood test and a chest X-ray may be taken to check your general health.

The doctor may have to remove a lymph node and examine it under a microscope. This can be carried out under a local anaesthetic, but in a lot of cases, a general anaesthetic is required to complete the test.

Lymph node biopsy:

Before the test you may be given a mild sedative to help you relax while the test is being carried out. A local anaesthetic is used on the skin to numb the area. A small cut is made through the skin and the lymph node is removed for examination under a microscope.

A couple of stitches are generally required at the biopsy site. This test can be uncomfortable but only takes 5-10 minutes to do. As soon as the sedation has worn off you will be able to go home. You will have to arrange for someone to take you home, as you will be feeling sleepy. You will not be able to drive for 24 hours after the test.

A general anaesthetic may be required if the lymph node is not easy to locate. You will not be allowed to eat or drink for a few hours before the test. You may also be given a sedative. This will help you feel more relaxed when going to theatre. The procedure takes about 15-20 minutes to complete. You will not be allowed to eat or drink anything for at least four hours after the test. You should be allowed to go home the next day.

If the enlarged lymph nodes are in the chest you may need to have a mediastinoscopy.

Mediastinoscopy:

This test allows the doctor to examine the area at the centre of the chest (mediastinum) and the lymph nodes that are found there. This test is done under a general anaesthetic and will mean a short stay in hospital. Before the test you will not be able to eat or drink for a few hours. Just before the test you may be given a sedative. This will help you to feel more relaxed going to theatre.

A small cut is made through the skin at the base of the neck above your breastbone. A tube, like a small telescope, is passed into the chest. The doctor can then view the tissues and organs in the mediastinum. He or she will take samples of lymph nodes and other tissues for examination under a microscope. This examination takes 20-30 minutes to complete. You will not be able to eat or drink anything for at least four hours after the test.

If there are lymph nodes in the abdomen these will have to be biopsied under a general anaesthetic. However, this is not common. Your doctor will discuss this with you if it is needed.

Where the biopsy test shows that you have lymphoma it will also indicate the type of lymphoma it is.

Non-Hodgkin Lymphoma

Where the biopsy test shows that you have lymphoma it will also indicate the type of lymphoma it is.

Lymphomas are divided into three main groups:

Low-grade or slow growing

Intermediate grade (between fast and slow growing)

High-grade or faster growing

Non-Hodgkin lymphomas are also classified according to their cell type, either B-cell or T-cell; most people have a B-cell lymphoma, with T-cell lymphomas occurring more often in older children and young adults.

Symptoms

What are the symptoms of non-Hodgkin lymphoma?

The first symptom of non-Hodgkin lymphoma is usually a painless swelling in the neck, armpit or groin. Other symptoms may include any of the following:

Night sweats–you may need to change your bedclothes during the night.

High temperatures or fevers that occur for no apparent reason.

You may notice that your clothes feel loose and you have lost weight without trying to.

Feeling tired all the time and poor appetite.

Children may develop a cough or shortness of breath. They may also complain of abdominal (tummy) pain. You may notice a lump in your child’s abdomen.

All of these symptoms can be caused by conditions other than lymphoma. However, you must have them checked out by your doctor. He or she will decide what to do.

Lymphoma Treatment

After the tests, what about treatment?

The type of treatment you get will depend on where the disease is and what part of the body is affected. Your doctor will also take into account your general health and whether you have other symptoms such as weight loss or fever.

Non-Hodgkin’s lymphoma is graded stage 1-4 depending on how many lymph nodes or organs are involved. For example, stage one is where one group of lymph nodes or a single organ is involved. As well as giving each stage a number doctors use a letter code–either A or B–to indicate whether you have symptoms other than swollen glands or not. If you have no symptoms your disease will be classified as A, if you have symptoms it is B. Ask your doctor or nurse if you need more information. He or she will explain the stages of non-Hodgkin’s lymphoma to you in more detail.

A team of specialists will plan your treatment. Radiotherapy and chemotherapy may be used alone or together. Many types of lymphoma are curable. The aim of treatment is to cure the cancer while causing as little damage as possible to other tissues and organs.

Low-grade lymphomas

Low-grade lymphomas often develop very slowly. There may be long periods where there is little or no change in the disease. In many cases regular check-ups is all that is needed and treatment may be held off for a long time. You may notice that the glands increase in size only to shrink again within a few weeks. This may happen even though you are not on treatment. This is not unusual–the lymphoma may behave like this for several years.

However, if the glands get bigger and do not shrink down within a few weeks, they may begin to cause discomfort by pressing against other organs inside the body. When this happens some form of treatment is usually required. If the symptoms are caused by one group of lymph nodes and you feel well otherwise you may be given radiotherapy to shrink the nodes down.

If you have other symptoms such as fever or weight loss as well as enlarged lymph nodes, chemotherapy may be given. Chemotherapy is better for treating disease that has spread further, because it gets into the blood stream and goes to most parts of the body.

Intermediate grade lymphomas

These lymphomas tend to develop and grow more quickly. The glands grow steadily bigger. In some cases treatment needs to start as soon as diagnosis and staging is complete. Depending on the type of lymphoma it is, the treatment is usually similar to that for high-grade lymphomas.

Chemotherapy is usually given for this type of lymphoma and is often followed by radiotherapy to the area(s) where the glands are most swollen.

High-grade lymphomas

High-grade lymphomas are faster growing and require intensive chemotherapy. Up to 3-4 chemotherapy drugs may be given. You will have to stay in hospital for this treatment. The chemotherapy is given over several days and you will need extra fluids between treatments. Chemotherapy has a temporary effect on healthy tissue in the body and your resistance to infection will be low.

These lymphomas can spread to the brain and spinal cord. Chemotherapy given intravenously (through a drip in your arm) is not able to reach these areas. If the lymphoma extends to the brain or spinal fluid or your doctor thinks you are at high risk of it developing you will get additional treatment. This can be either chemotherapy given into the spinal fluid during a lumbar puncture, radiotherapy or both.

Chemotherapy can often shrink high-grade lymphomas very quickly. If it appears that there is a high risk of the disease coming back after standard treatment, other treatments such as high-dose therapy with stem cell or bone marrow support may be used. See page 34 for more information.

Children with non-Hodgkin lymphoma nearly always have high-grade tumours and the main form of treatment is intensive chemotherapy. Radiotherapy may be used as well.

You may notice that other people with non-Hodgkin lymphoma are getting different treatment to you. Their cancer may not be at the same stage as yours and their treatment needs may be different.

At this time you may be anxious about what is going to happen next. Do not be afraid to ask your doctor. You may want to use the fill-in page at the back of this booklet to write down your questions and the answers you receive. Your doctor will talk to you and tell you about your treatment choices.