Hodgkin lymphoma

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

Around 2,100 people are diagnosed with Hodgkin lymphoma in the UK each year, and it can affect people at any age.

It's one of the most common cancers in people in their teens and early 20s. But most people diagnosed with it are older than this, and it's more common in people over 70.

There are 2 main types of lymphoma:

• Hodgkin
• non-Hodgkin lymphoma

How lymphoma develops, and the treatment you may need, depends on which type you have.

Doctors can tell which type of Hodgkin lymphoma you have by looking at some of the lymphoma cells under a microscope.

Classical Hodgkin lymphoma is the most common type of Hodgkin lymphoma. About 9 in 10 (90%) of all Hodgkin lymphomas are this type.

Doctors split classical Hodgkin lymphoma into 4 sub-types, depending on how the cells look under a microscope. These are:

• nodular sclerosing
• mixed cellularity
• lymphoma-depleted
• lymphocyte-rich

All of these sub-types are treated in a similar way.

Nodular lymphocyte predominant Hodgkin lymphoma (NLPHL) is a rarer type of Hodgkin lymphoma. It develops differently from classical Hodgkin lymphoma, and it's treated differently too. It also tends to grow more slowly.

In rare cases, NLPHL can change into a faster growing non-Hodgkin lymphoma (NHL). If that happens, doctors treat it as NHL, not as Hodgkin lymphoma.

If you have symptoms, you'll usually start by going to your doctor. They may arrange for you to have blood tests or scans. Your doctor will then 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'll also examine you.

If you think you may be pregnant, tell your doctor or the cancer doctor. Some tests and treatments for Hodgkin lymphoma can be harmful to a baby in the womb.

You can usually still have tests and treatment for lymphoma while pregnant. But it's important to talk to your cancer doctor so they can plan your care safely.

Waiting for test results can be a difficult time, and support while you wait can help.

A biopsy is the most important test for diagnosing Hodgkin lymphoma. In a biopsy, a doctor or nurse takes out a small piece of tissue, or a sample of cells, from the part of your body they want to check.

Usually the sample comes from an enlarged lymph node. You may have the whole lymph node removed, or only part of it. Sometimes a local anaesthetic is used to numb the area. In other cases you'll have a general anaesthetic and a small operation.

Your cancer doctor or specialist nurse will explain which type of biopsy is best for you.

You'll need more tests before you start treatment for lymphoma. They help your cancer team plan your treatment so it's safe and works as well as it can.

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

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

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

A CT scan gives your doctors a detailed picture of the inside of your body. The scanner takes X-rays, and the picture is built up from them.

A PET scan uses a low dose of radiation to check how active the cells are in different parts of your body. A PET-CT scan combines a PET scan and a CT scan in one go.

An MRI scan uses magnetism to build up a detailed picture of areas of the body.

Bone marrow is the spongy material inside your bones, and it's where your blood cells are made. In a bone marrow biopsy, the doctor usually takes a small sample of bone marrow from the back of the hip bone (pelvis). Rarely, the sample is taken from the breastbone (sternum).

In a lumbar puncture, a doctor takes a small sample of the fluid that surrounds your brain and spinal cord. This fluid is called cerebrospinal fluid (CSF).

Your test results tell your cancer team more about the Hodgkin lymphoma, and that includes its stage. The stage describes how many areas of your body the lymphoma has reached, and where those areas are.

Knowing the stage helps your doctors plan the best treatment for you.

Hodgkin lymphoma is usually treated very effectively, 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, cancer specialist or nurse will explain the different treatments and their side effects. They'll also talk with you about the things to consider when making treatment decisions, before you agree (consent) to have treatment.

Treatment often 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 your ability to get pregnant or make someone pregnant (fertility). If there's 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 general information below explains how the different stages of HL are treated. It doesn't cover every situation. Your treatment plan will also depend on the specific type of HL you have.

If you have early stage classical Hodgkin lymphoma, you'll usually be treated with chemotherapy, and sometimes steroids as well.

After your first few cycles of chemotherapy, you'll usually have a PET-CT scan. It checks how the lymphoma is responding to treatment.

What the scan shows decides what comes next. You may need more chemotherapy, and some people may be offered radiotherapy as well.

If your Hodgkin lymphoma is more advanced, chemotherapy is usually the main treatment, sometimes along with steroids. You may have more chemotherapy, or higher doses of treatment, than people with early stage lymphoma.

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

Most people won't need any further treatment. But sometimes there may be signs of lymphoma remaining after treatment, or the lymphoma may come back. If that 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 radiotherapy.

After surgery or radiotherapy, you may not need any further treatment. Instead, you may have regular appointments so your doctor can monitor the lymphoma. This is called watch and wait. You may also hear it called active surveillance or active monitoring.

If you have advanced NLPHL and no symptoms, you'll usually have regular appointments and tests so your doctor can keep an eye on the lymphoma. This is called watch and wait.

If the lymphoma causes symptoms that you find hard to manage, your doctor will talk to you about starting treatment. You'll usually have chemotherapy together 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 treatment for non-Hodgkin lymphoma instead.

For most people with Hodgkin lymphoma, the first treatment works very well and clears all signs of the lymphoma. Doctors call this complete remission. For some people, though, the lymphoma doesn't respond completely. There are still signs of it after treatment has finished, and this is called refractory lymphoma.

If you have refractory lymphoma, your cancer doctor will talk with you about what can be done next. You may decide to have more treatment to try to bring the lymphoma into complete remission. Or you may choose treatments that control the lymphoma and ease any symptoms it's causing.

You may be given more chemotherapy, this time with different drugs. Targeted drugs and immunotherapy drugs are also an option.

Some people may have a stem cell transplant. This can use your own stem cells (called autologous) or a donor's (called donor or allogeneic).

Hodgkin lymphoma can sometimes come back after treatment. Doctors call this a relapse or a recurrence.

You can usually have more treatment, and it can still work well. What you are offered will depend on:

• which treatments you have already had
• how quickly the lymphoma has come back
• 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 the ones you had before
• radiotherapy, to treat a new area of lymphoma in the body or an area that's causing symptoms
• targeted and immunotherapy drugs, which are often used if the lymphoma comes back
• high dose chemotherapy followed by autologous stem cell transplants (using your own stem cells), which you may be offered after further chemotherapy to get the lymphoma back into remission
• a donor stem cell (allogeneic) transplant, which may be offered if the lymphoma doesn't respond well enough to other treatments

People sometimes search for Hodgkin lymphoma statistics to understand what might happen to someone in their situation. This is called prognosis.

Doctors can't predict exactly what will happen in the future. But they may use some of the following types of statistics to support an estimate:

• survival rates, which is the number of people who are alive after certain periods of time after a Hodgkin lymphoma diagnosis, including people who have no signs of lymphoma and also people who have lymphoma that has come back
• recurrence or relapse rates, which is the number of people whose Hodgkin lymphoma has come back after certain periods of time after treatment
• mortality, which 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 it.

Statistics can be worrying and difficult to understand. They may help you understand your chances of a possible outcome. But they don't 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's 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

You'll have regular check-ups during and after your treatment. Your cancer doctor or specialist nurse will explain what to expect.

Follow-up appointments are a good time to talk to your cancer doctor or specialist nurse about any concerns you have. If you have any problems or notice new symptoms between appointments, tell them as soon as possible.

Macmillan Cancer Support have more information about follow-up care after lymphoma treatment.

Sometimes side effects carry on, or only appear, months or years after treatment. These are called late effects.

Macmillan Cancer Support also have more information about the long-term and late effects of treatment for lymphoma.

Recovery after lymphoma treatment can take time, and some days you'll feel better than others.

A healthy lifestyle can help speed up your recovery. Even small changes may improve your wellbeing and long-term health. If your lifestyle is already healthy, you may still choose to make some positive changes after treatment.

Macmillan Cancer Support have more information on leading a healthy lifestyle after treatment.

Macmillan Cancer Support also have more information on finishing cancer treatment and being physically active after treatment.