Hodgkin lymphoma (HL)

Hodgkin lymphoma (HL) is a type of blood cancer. It develops when blood cells called lymphocytes become abnormal.

Around 2,100 people are diagnosed with Hodgkin lymphoma in the UK each year. It can affect people at any age. It is one of the most common cancers to affect people in their teens and early 20s. But most people who are diagnosed with it are older than this. And it is more common in people over 70.

Hodgkin lymphoma is 1 of 2 main types of lymphoma. The other type is called non-Hodgkin lymphoma (NHL). How lymphoma develops and the treatment you may need depends on the type of lymphoma.

Hodgkin lymphoma usually starts in the lymph nodes. These are part of the system in the body that protects us from infection and disease. Several areas of lymph nodes around the body may be affected.

The most common symptom of lymphoma is a painless swelling or lump in the neck, armpit or groin. Rarely, a symptom of Hodgkin lymphoma is aching or painful swollen lymph nodes soon after drinking alcohol.

Sometimes, HL can affect other parts of the body. We have more information about possible signs and symptoms of lymphoma.

If you have symptoms, you usually start by going to your GP. They may arrange for you to have blood tests or scans. Your GP will refer you to hospital for tests and for specialist advice and treatment.

At the hospital, the cancer doctor will ask about any symptoms, your general health and any illnesses you have had. They will also examine you.

If you think you may be pregnant, tell your GP or cancer doctor. Some tests and treatments for lymphoma can be harmful to a baby in the womb. You can usually still have tests and treatment for lymphoma while pregnant. But it is important to talk to your cancer doctor so they can plan your care safely.

Waiting for test results can be a difficult time, we have more information that can help.

The most important test for diagnosing lymphoma is a biopsy. A doctor or nurse removes a small piece of tissue or a sample of cells from the area of the body they want to check.

Usually this is from an enlarged lymph node. You may have all or part of the lymph node removed. You may have a local anaesthetic to numb the area, or a general anaesthetic and a small operation. Your cancer doctor or specialist nurse will explain the type of biopsy that is best for you.

You will have more tests before you start treatment for lymphoma. These help your cancer team plan your treatment safely and effectively.

Some tests check your general health and how well your heart, lungs, liver and kidneys are working. This includes blood tests to check:

• the levels of different blood cells in your blood
• whether you have certain infections linked to lymphoma, such as HIV and hepatitis.

Other tests find out more about the stage of the lymphoma. You may have some of the following tests.

Treatment for Hodgkin lymphoma is usually very effective, and this type of lymphoma can often be cured.

A team of specialists will meet to discuss the best possible treatment for you. This is called a multidisciplinary team (MDT).

Your doctor or cancer specialist or nurse will explain the different treatments and their side effects. They will also talk to you about things to consider when making treatment decisions before you agree (consent) to have treatment.

Often treatment involves a combination of cancer drugs. Sometimes other treatments may be used. You may have some treatments as part of a clinical trial.

Some cancer treatments for lymphoma can affect the ability to get pregnant or make someone pregnant (fertility). If there is a risk your treatment might affect your fertility, your cancer doctor or specialist nurse should talk to you about this before you start treatment.

The following general information explains how different stages of HL are treated. It does not cover all situations. Your treatment plan will also depend on the specific type of HL you have.

If you have early stage classical Hodgkin lymphoma, you usually have chemotherapy and sometimes steroids.

You usually have a PET-CT scan after your first few cycles of chemotherapy. This is to check how the lymphoma is responding. Depending on the results of your scan, you may have more chemotherapy. Some people may be offered radiotherapy treatment as well.

If the lymphoma is more advanced, chemotherapy and sometimes steroids is usually the main treatment. You may have more chemotherapy or higher doses of treatment than for early stage lymphoma.

You usually have a PET-CT scan after 2 cycles of chemotherapy to check how the lymphoma is responding. Depending on the results on your scan, you usually have more chemotherapy. Sometimes, you may also have radiotherapy.

Most people will not need any further treatment. But sometimes there may be signs of lymphoma remaining after treatment, or the lymphoma may come back. If this happens you might need more treatment.

If you have stage 1 nodular lymphocyte predominant Hodgkin lymphoma (NLPHL), your doctor may suggest a small operation to remove any affected lymph nodes. Sometimes radiotherapy is used instead of surgery.

If you have stage 2 NLPHL, your doctor may suggest having radiotherapy.

After surgery or radiotherapy, you may not need any further treatment. Instead, you may have regular appointments to monitor the lymphoma. This is called watch and wait. It may also be called active surveillance or active monitoring.

If you have advanced NLPHL and you do not have any symptoms, you will usually have regular appointments and tests to monitor the lymphoma. This is called watch and wait.

If your lymphoma causes symptoms that you find hard to manage, then your doctor will talk to you about starting treatment. You will usually have chemotherapy combined with a type of targeted drug called rituximab. Some people may have targeted therapy by itself.

Sometimes, NLPHL can change into a type of aggressive non-Hodgkin lymphoma. If this happens you will need to have treatment for non-Hodgkin lymphoma instead.

For most people, their first treatment is very effective and gets rid of all signs of the lymphoma. This is called complete remission. But for some people, the lymphoma does not completely respond to treatment. This means there are still signs of lymphoma after your treatment is finished. This is called refractory lymphoma.

If you have refractory lymphoma, your cancer doctor will talk to you about treatment options. You may decide to have further treatment to get the lymphoma into a complete remission. Or you may decide to have treatments that will control the lymphoma and treat any symptoms it is causing.

You may be treated with further chemotherapy using different drugs. You can also have targeted and immunotherapy drugs.

Some people may have a stem cell transplant using their own stem cells (autologous) or a donor’s (donor or allogeneic).

Hodgkin lymphoma can sometimes come back after treatment. This is called a relapse or a recurrence. You can usually have more treatment. Treatment can still work well. Having more treatment will depend on which treatments you have already had, how quickly the lymphoma has come back and where it has come back.

You may have 1 or a combination of the following treatments:

• Chemotherapy with different drugs that are usually stronger than you had before.
• Radiotherapy to treat a new area of lymphoma in the body or an area that is causing symptoms.
• Targeted and immunotherapy drugs are often used if the lymphoma comes back.
• High dose chemotherapy followed by autologous stem cell transplants (using your own stem cells). You may be offered this treatment after having further chemotherapy to get the lymphoma back into remission.
• A donor stem cell (allogeneic) transplant may be offered if the lymphoma does not respond well enough to other treatments.

Hodgkin lymphoma prognosis

People sometimes search for Hodgkin lymphoma statistics to help them understand what might happen to someone in their situation. This is called prognosis. Doctors cannot predict exactly what will happen in the future. But they may use some of the following types of statistics to help them make an estimate:

• Hodgkin lymphoma survival rates — this is the number of people who are alive after certain periods of time after a Hodgkin lymphoma diagnosis. It includes people who have no signs of lymphoma and also people who have lymphoma that has come back.
• Hodgkin lymphoma recurrence or relapse rates — this is the number of people whose Hodgkin lymphoma has come back after certain periods of time after treatment.
• Hodgkin lymphoma mortality — this is the number of people who have died because of Hodgkin lymphoma during a certain period of time.

You may find this information helpful, but not everyone wants or needs this type of information. Statistics can be worrying and difficult to understand. They may help you understand your chances of a possible outcome. But they do not tell you what will definitely happen to you.

If you want information about lymphoma statistics, or you find numbers online that might apply to you, it is best to talk about them with your cancer doctor or nurse. They can explain:

• which statistics apply to someone with your diagnosis
• what the information may mean to you
• how this may affect any treatment decisions you are thinking about.