Cancer starts when cells start to grow out of control. Cells in nearly any part of the body can become cancer, and can then spread to other parts of the body. To learn more about how cancers start and spread, see What Is Cancer?

Lymphomas are cancers that start in white blood cells called lymphocytes. There are 2 main types of lymphoma:

• Hodgkin lymphoma (HL)
• Non-Hodgkin lymphoma (NHL)

They behave, spread, and respond to treatment differently, so it's important for you to know which one you have.

This information is about Hodgkin lymphoma. To learn about the other type, see Non-Hodgkin Lymphoma.

The lymph system

To understand what Hodgkin lymphoma is, it helps to know about the lymph system (also known as the lymphatic system). The lymph system is part of the immune system, which helps fight infections and some other diseases. The lymph system also helps control the flow of fluids in the body.

The lymph system is made up mainly of cells called lymphocytes, a type of white blood cell. There are 2 main types of lymphocytes:

• B lymphocytes (B cells): B cells make proteins called antibodies to help protect the body from germs (bacteria and viruses).
• T lymphocytes (T cells): There are many types of T cells. Some T cells destroy germs or abnormal cells in the body. Other T cells help boost or slow the activity of other immune system cells.

Hodgkin lymphoma usually starts in B lymphocytes.

Start and spread of Hodgkin lymphoma

Lymph tissue is in many parts of your body, so Hodgkin lymphoma can start almost anywhere. 

Survival rates tell you what percentage of people with the same type and stage of cancer are still alive a certain amount of time (usually 5 years) after they were diagnosed. They can’t tell you how long you will live, but they may help give you a better understanding about how likely it is that your treatment will be successful.

What is a 5-year survival rate?

Statistics on the outlook for a certain type and stage of cancer are often given as 5-year survival rates. The 5-year survival rate is the percentage of people who live at least 5 years after being diagnosed with cancer. For example, a 5-year survival rate of 70% means that about 70 out of 100 people who have that cancer are still alive 5 years after being diagnosed.

Keep in mind that many of these people live much longer than 5 years after diagnosis. And remember, the 5-year survival rates are estimates – your outlook can vary based on a number of factors specific to you.

Cancer survival rates don’t tell the whole story

Survival rates are often based on previous outcomes of large numbers of people who had the disease, but they can’t predict what will happen in any individual case. There are a number of limitations to remember:

• The numbers below are among the most current available, but they're old. And to get 5-year survival rates, doctors have to look at people who were treated at least 5 years before these numbers were collected. Treatments are improving over time, people who are diagnosed with Hodgkin lymphoma today may have a better outlook than these statistics show.
• These statistics are based on the stage of the cancer when it was first diagnosed. They do not apply to cancers that later come back or spread, for example.
• The outlook for people with Hodgkin lymphoma varies by the stage (extent) of the cancer – in general, the survival rates are higher for people with earlier stage cancers. But many other factors can affect a person’s outlook (see below). The outlook for each person is specific to their circumstances.

Your doctor should be able to tell you how these numbers may apply to you.

Survival rates for Hodgkin lymphoma

The numbers below come from the National Cancer Institute’s SEER database, looking at more than 8,000 people diagnosed with Hodgkin lymphoma between 1988 and 2001. The 5-year survival rate for people with stage I Hodgkin lymphoma is about 90%.  For stage II Hodgkin lymphoma, the 5-year survival rate is about 90%. The 5-year survival rate for stage III Hodgkin lymphoma is about 80%. Stage IV Hodgkin lymphoma has a 5-year survival rate of about 65%.

Remember, these survival rates are only estimates – they can’t predict what will happen to any individual person. We understand that these statistics can be confusing and may lead you to have more questions. Talk to your doctor to better understand your specific situation. 

Other prognostic factors

Along with the stage of the Hodgkin lymphoma, other factors can affect a person’s prognosis (outlook). For example, having some factors means the lymphoma is likely to be more serious:

• Having B symptoms or bulky disease
• Being older than 45
• Being male
• Having a high white blood cell count (above 15,000)
• Having a low red blood cell count (hemoglobin level below 10.5)
• Having a low blood lymphocyte count (below 600)
• Having a low blood albumin level (below 4)
• Having a high erythrocyte sedimentation rate, or ESR (over 30 in someone with B symptoms, or over 50 for someone without B symptoms)
  

Some of these factors are used to help divide stage I or II Hodgkin lymphoma into favorable and unfavorable groups, which can affect how intense the treatment needs to be.   

To learn more, see Treating Classic Hodgkin Lymphoma by Stage.

Treatments used today cure about 8 out of 10 cases of Hodgkin lymphoma (HL). Still, important research is going on in many university hospitals, medical centers, and other institutions around the world. Scientists are getting closer to finding out what causes the disease and how to better treat it. This is of special interest for hard-to-treat cases, like those that don't respond to current treatments or come back after treatment. Doctors are also looking for ways to limit the long-term side effects linked to HL treatment.

Imaging tests

PET/CT scans are commonly used to help doctors stage HL and decide how much treatment needs to be given. Doctors are also looking at whether PET/CT scans done during treatment can help decide if more or less treatment is needed.

Researchers are trying to find out if MRI scans might work as well in children and teens with HL. If so, it would mean less radiation exposure and the resulting long-term side effects in young people.

Treatment

Overall cure rates for HL are high, but long-term side effects of treatment are an important issue. A very active area of research is directed at learning which patients can be treated with gentler therapy and which patients need stronger treatment.

Radiation

Doctors are looking to see which patients (especially children) might do just as well with lower doses of radiation, or even no radiation . They're also studying if newer forms of radiation therapy, such as intensity-modulated radiation therapy (IMRT) and proton therapy, might be useful for HL. These approaches focus radiation more precisely on tumors, which limits the doses reaching nearby normal tissues.

Chemotherapy

A related area of research is finding less-toxic treatments that have fewer serious long-term side effects, yet still cure as many patients as possible. Lower doses of chemotherapy (chemo), as well as new chemo drugs and drug combinations are being studied. Many of these drugs are already used to treat other cancers and have shown promise against HL that has come back (relapsed) after other chemo treatments. Studies are in progress to see if these drugs could work better than the ones now in use.

Doctors are also looking for better chemo drugs to use with stem cell transplant. Again, improving outcomes while limiting long-term side effects is the goal.

Another approach is using newer drugs that better target HL cells. Some of these are described below.

Targeted therapy

Newer drugs that work differently from standard chemo drugs are now being studied. Researchers are learning a lot about the gene changes found in HL cells. This could lead to drugs that target these changes and spare normal cells. These are known as targeted therapy drugs. Many other types of cancer are already treated with targeted therapies.

Some of these targeted drugs are being studied in combinations, in the hope that they might work better when given together. Many are given along with other cancer treatments, like chemo and/or radiation. 

Immunotherapy (including monoclonal antibodies)

Immunotherapy is treatment that helps the body’s immune system find and attack cancer cells. Immunotherapy is helpful against several types of cancer, including Hodgkin lymphoma.

Immune checkpoint inhibitors

Immune system cells normally have substances on them that act as checkpoints to keep them from attacking healthy cells in the body. Cancer cells sometimes use these checkpoints to avoid being attacked by the immune system. Today, drugs that block these checkpoints are used to treat HL after other treatments have been tried. Researchers are now studying other ways to use these drugs. For instance, they're looking at whether these drugs might be used as "maintenance therapy" to keep HL from coming back after transplant. They're also testing them as a first treatment for HL. The use of immune checkpoint inhibitors in children and teens, as well as in older people who are too sick to get standard treatment, is also being studied. Several other checkpoint inhibitor drugs are being studied, too.

Chimeric antigen receptor (CAR) T-cell therapy

In this treatment, immune cells called T cells are removed from the patient’s blood and altered in the lab so they have receptors called chimeric antigen receptors, or CARs on their surface. These receptors can attach to proteins on the surface of lymphoma cells. The altered T cells are then multiplied in the lab and put back into the patient’s blood. They can then find the lymphoma cells and launch a precise immune attack against them.

This technique has shown encouraging results in early clinical trials against some hard-to-treat Hodgkin lymphomas. Doctors are still improving how they make the T cells and are learning the best ways to use them. CAR T-cell therapy is only available in clinical trials at this time.

Monoclonal antibodies

Monoclonal antibodies (mAbs) are man-made versions of immune system proteins. Some can kill cancer cells by themselves. Others have radioactive molecules or cell poisons attached to them, which help kill cancer cells. An advantage of these drugs is that they seem to target lymphoma cells while having fewer side effects than standard chemo drugs. They may be used alone or along with chemo.

Some mAbs, such as brentuximab vedotin (Adcetris) and rituximab (Rituxan), are already being used to treat some cases of HL. Researchers are now studying if these drugs might be useful in other ways. For instance, brentuximab is now being studied to see if it might be helpful earlier in the course of the disease or as part of the treatment used to get ready for a transplant. And studies are now being done to see if rituximab can help treat classic forms of HL as well as the nodular lymphocyte-predominant type. Researchers are also looking for the best way to use mAbs along with standard treatment. Many newer mAbs are now being studied, too.

Most people with Hodgkin lymphoma (HL) see their doctor because they have certain symptoms, or because they just don’t feel well and go in for a check-up.

If a person has signs or symptoms that suggest HL, exams and tests will be done to find out for sure and, if so, to determine the exact type.

Medical history and physical exam

The doctor will want to get a thorough medical history. You'll be asked about symptoms, possible risk factors, family history, and other medical conditions.

Next, the doctor will examine you (or your child), paying close attention to lymph nodes and other parts of the body that might be affected, including the spleen and liver. Because infections are the most common cause of enlarged lymph nodes, especially in children, the doctor will look for infection in the part of the body near any swollen lymph nodes.

The doctor also might order blood tests to look for signs of infection or other problems. If the doctor suspects that HL might be the problem, a biopsy of a swollen lymph node might be recommended.

Biopsies

Because swollen lymph nodes are more likely to be caused by something other than HL, like an infection, doctors often wait a few weeks to see if they shrink on their own as the infection goes away. You may be given antibiotics to see if they cause the nodes to shrink.

If the nodes don’t shrink or if they continue to grow, a lymph node (or a small piece of a node) is taken out to be checked in the lab. This procedure, called a biopsy, is the only way to be sure of the diagnosis. If it is HL, the biopsy can also show what type it is.

Types of biopsies

There are different types of biopsies. Doctors choose the best one to do based on the situation.

Excisional or incisional biopsy: This is the preferred and most common type of biopsy for an enlarged lymph node. The doctor cuts through the skin to remove the lymph node.

• If the whole lymph node is removed, it's an excisional biopsy.
• If a small part of a larger tumor or node is removed, it's an incisional biopsy.

If the node is just under the skin, the biopsy is fairly simple and can sometimes be done with numbing medicine (called local anesthesia). But if the node is inside the chest or abdomen (belly), you'll be sedated or given general anesthesia (where drugs are used to put you in a deep sleep). This type of biopsy almost always provides enough tissue to make a diagnosis of HL and tell the exact type.

Needle biopsy: A needle biopsy is less invasive than excisional or incisional biopsies because there's no cut in the skin. But the drawback is that it might not get enough tissue to diagnose HL (or find out which type it is). There are 2 main types of needle biopsies:

• A fine needle aspiration (FNA) biopsy uses a very thin, hollow needle attached to a syringe to take out (aspirate) a small amount of fluid and tiny bits of tissue.
• A core needle biopsy uses a larger needle to remove a slightly larger piece of tissue.

To biopsy an enlarged node just under the skin, the doctor can aim the needle while feeling the node. If a node or tumor is deep inside the body, a CT scan or ultrasound (see below) can be used to guide the needle.

Most doctors do not use needle biopsies (especially FNA biopsies) to diagnose HL. But if the doctor suspects that lymph node swelling is caused by an infection or by the spread of cancer from another organ (such as the breast, lungs, or thyroid), a needle biopsy might be the first type of biopsy done. An excisional biopsy may still be needed to diagnose HL, even after a needle biopsy has been done.

If HL has already been diagnosed, needle biopsies are sometimes used to check changes (like swollen nodes) in other parts of the body that might be from the lymphoma spreading or coming back after treatment.

Bone marrow aspiration and biopsy: These tests are not used to diagnose HL, but they may be done after the diagnosis is made to see if the lymphoma is in the bone marrow. The bone marrow aspiration and biopsy are usually done at the same time. The samples are taken from the back of the pelvic (hip) bone, but sometimes they may be taken from other bones.

In bone marrow aspiration, you lie on a table (either on your side or on your belly). After cleaning the skin over the hip, the doctor numbs the skin and the surface of the bone by injecting a local anesthetic (numbing drug). This may cause a brief stinging or burning feeling. A thin, hollow needle is then pushed into the bone, and a syringe is used to suck out a small amount of liquid bone marrow. Even with the anesthetic, most patients have some brief pain when the marrow is pulled out.

A bone marrow biopsy is usually done just after the aspiration. A small piece or core of bone and marrow is removed with a slightly larger needle that's pushed into the bone. The biopsy may also cause some brief pain.

Most children having a bone marrow aspiration and biopsy are either given medicine to make them drowsy or are given general anesthesia so they're asleep while it's done.

Lab tests of biopsy samples

All biopsy samples are looked at under a microscope by a pathologist (a doctor specially trained to recognize cancer cells), who will look for Hodgkin lymphoma cells (called Reed-Sternberg cells). Sometimes the first biopsy doesn't give a clear answer and more biopsies are needed.

Looking at the tissue samples under the microscope is often enough to diagnose HL (and what type it is), but sometimes more lab tests are needed.

Immunohistochemistry: This lab test looks for certain proteins on cells, such as CD15 and CD30. These are found on the surface of the Reed-Sternberg cells in classic Hodgkin lymphoma (cHL). Tests for other proteins may point to nodular lymphocyte-predominant Hodgkin lymphoma (NLPHL), to non-Hodgkin lymphoma (rather than Hodgkin lymphoma), or maybe to other diseases.

Imaging tests

Imaging tests use x-rays, sound waves, magnetic fields, or radioactive particles to make pictures of the inside of the body. Imaging tests can be used in many ways, such as:

• To look for possible causes of certain symptoms, such as enlarged lymph nodes in the chest
• To help determine the stage (extent) of Hodgkin lymphoma
• To help show if treatment is working
• To look for possible signs of cancer coming back after treatment

These are the imaging tests most commonly used:

Chest x-ray

HL often enlarges lymph nodes in the chest. This can often be seen on a chest x-ray.

Computed tomography (CT) scan

A CT scan combines many x-rays to make detailed cross-sectional images of your body. This scan can help tell if any lymph nodes or organs in your body are enlarged. CT scans are useful for looking for HL in the neck, chest, abdomen (belly), and pelvis.

CT-guided needle biopsy: A CT scan can also be used to guide a biopsy needle into a suspicious area. For this procedure, a person lies on the CT scanning table while the doctor moves a biopsy needle through the skin and toward the area. CT scans are repeated until the needle is in the right place. A biopsy sample is then removed and sent to the lab to be looked at under a microscope.

Magnetic resonance imaging (MRI)

Like CT scans, MRIs show detailed images of soft tissues in the body. But MRIs use radio waves and strong magnets instead of x-rays. This test is rarely used in HL, but if the doctor is concerned about spread to the spinal cord or brain, MRI is very useful for looking at these areas. 

Positron emission tomography (PET) scan

For a PET scan, a slightly radioactive form of sugar is put into your blood. Over time, it collects in very active cells, like cancer cells. A special camera is then used to create a picture of the parts of the body where the radioactivity collected. The picture is not detailed like a CT or MRI scan, but it can give helpful information about your whole body.

PET scans can be used for many reasons in a person with HL:

• They can help show if an enlarged lymph node contains HL.
• They can help find small spots in the body that might be lymphoma, even if the area looks normal on a CT scan.
• They can help tell if the lymphoma is responding to treatment. Some doctors will repeat the PET scan after a few courses of chemotherapy. If it's working, the lymph nodes will no longer take up the radioactive sugar.
• They can be used after treatment to help decide if an enlarged lymph node still has cancer or if it's just scar tissue.

PET/CT scan: Some machines can do both a PET scan and a CT scan at the same time. This lets the doctor compare areas of higher radioactivity on the PET scan with the more detailed pictures from the CT scan. PET/CT scans often can help pinpoint the areas of lymphoma better than a CT scan alone.

Bone scan

A bone scan isn't usually done unless a person is having bone pain or has lab test results that suggest the lymphoma might have reached the bones.

For this test, a radioactive substance is injected into a vein. It travels to damaged areas of bone, and a special camera can then detect the radioactivity. HL sometimes causes bone damage, which may be picked up on a bone scan. But bone scans can’t show the difference between cancers and non-cancer problems, so more tests might be needed.

Other tests

Blood tests

Blood tests aren’t used to diagnose HL, but they can help your doctor get a sense of how advanced it is and how well you might tolerate certain treatments.

The complete blood count (CBC) is a test that measures the levels of different cells in the blood. People with HL can sometimes have abnormal blood counts. For example, if the lymphoma invades the bone marrow (where new blood cells are made) a person might have anemia (not enough red blood cells). A high white blood cell count is another possible sign of HL, although it can also be caused by infection.

A test called an erythrocyte sedimentation rate (ESR) can help measure how much inflammation is in the body. It can be elevated in some people with HL.

Blood tests might also be done to check liver and kidney function and to look for signs that the cancer might have reached the bones. Some women may have a pregnancy test.

Your doctor might also suggest other blood tests to look for signs of certain infections:

• HIV test: This may be done if you have abnormal symptoms that might be related to HIV infection.
• Hepatitis B and C virus test: Certain chemo drugs could cause problems if you have these infections. 

Tests of heart and lung function

These tests might be done if certain chemo drugs that could affect the heart or the lungs are going to be used.

• An echocardiogram (an ultrasound of the heart) or a MUGA scan can be used to check heart function.
• Lung (pulmonary) function tests (PFTs) can be used to see how well the lungs are working.

After someone is diagnosed with Hodgkin lymphoma (HL), doctors will try to figure out if it has spread, and if so, how far. This process is called staging. The stage of a cancer describes how much cancer is in the body. It helps determine how serious the cancer is and how best to treat it. Doctors also use a cancer's stage when talking about survival statistics.

HL generally starts in the lymph nodes. If it spreads, it's usually to another set of nearby lymph nodes. It can invade (grow into) nearby organs as well. Rarely, HL will start in an organ other than lymph nodes, such as a lung.

The stage is based on:

• Your medical history
• If you have certain symptoms (called B symptoms)
• The physical exam
• Biopsies
• Imaging tests, which typically include a chest x-ray, CT scan of the chest/abdomen/pelvis, and PET scan
• Bone marrow aspiration and biopsy (sometimes, but not always done)

These exams, tests, and biopsies are discussed in Tests for Hodgkin Lymphoma.

In general, the results of imaging tests such as PET and CT scans are the most important when determining the stage of the lymphoma.

Lugano classification

A staging system is a way for the cancer care team to sum up the extent of a cancer’s spread. The staging system used for Hodgkin lymphoma is the Lugano classification, which is based on the older Ann Arbor system. It has 4 stages, labeled I, II, III, and IV.

For limited stage (I or II) HL that affects an organ outside of the lymph system, the letter E is added to the stage (for example, stage IE or IIE).

Stage I: Either of the following means that the HL is stage I:

• HL is found in only 1 lymph node area or lymphoid organ such as the thymus (I).
• The cancer is found only in 1 part of 1 organ outside the lymph system (IE).

Stage II: Either of the following means that the HL is stage II:

• HL is found in 2 or more lymph node areas on the same side of (above or below) the diaphragm, which is the thin muscle beneath the lungs that separates the chest and abdomen (II).
• The cancer extends locally from one lymph node area into a nearby organ (IIE).

Stage III: Either of the following means that the HL is stage III:

• HL is found in lymph node areas on both sides of (above and below) the diaphragm (III).
• HL is in lymph nodes above the diaphragm and in the spleen.

Stage IV: HL has spread widely into at least one organ outside of the lymph system, such as the liver, bone marrow, or lungs.

Other modifiers may also be used to describe the Hodgkin lymphoma stage:

Bulky disease

This term is used to describe tumors in the chest that are at least ⅓ as wide as the chest, or tumors in other areas that are at least 10 centimeters (about 4 inches) across. It's usually labeled by adding the letter X to the stage. It's especially important for stage II lymphomas, because bulky disease may require more intensive treatment.

A vs. B

Each stage may also be assigned a letter (A or B). B is added (stage IIIB, for example) if a person has any of these B symptoms:

• Loss of more than 10% of body weight over the previous 6 months (without dieting)
• Unexplained fever of at least 100.4°F (38°C)
• Drenching night sweats

If a person has any B symptoms, it usually means the lymphoma is more advanced, and more intensive treatment is often recommended. If no B symptoms are present, the letter A is added to the stage.

Resistant or recurrent Hodgkin lymphoma

Resistant or recurrent HL is not part of the formal staging system, but doctors or nurses might use these terms to describe what's going on with the lymphoma in some cases.

• The terms resistant or progressive disease are used when the lymphoma does not go away or progresses (grows) while you're being treated.
• Recurrent or relapsed disease means that HL went away with treatment, but it has now come back. If the lymphoma returns, it might be in the same place where it started or in another part of the body. This can happen shortly after treatment or years later.

You or your child can have (HL) and feel perfectly well. But HL often causes symptoms or changes that should be checked by a doctor.

Lump(s) under the skin

The most common symptom of HL is a lump in the neck, under the arm, or in the groin, which is an enlarged lymph node. It doesn’t usually hurt, but it may become painful after drinking alcohol. The lump might get bigger over time, or new lumps might appear near it or even in other parts of the body.

Still, HL is not the most common cause of lymph node swelling. Most enlarged lymph nodes, especially in children, are caused by an infection. Lymph nodes that grow because of infection are called reactive or hyperplastic nodes. These often hurt when they're touched. If an infection is the cause, the node should go back to its normal size after the infection goes away.

Other cancers can cause swollen lymph nodes, too. If you have an enlarged lymph node, especially if you haven’t had a recent infection, it’s best to see a doctor so that the cause can be found and treated, if needed.

B symptoms

Some people with HL have what are known as B symptoms:

• Fever (which can come and go over several weeks) without an infection
• Drenching night sweats
• Weight loss without trying (at least 10% of your body weight over 6 months)

These symptoms are an important part of staging HL and determining a person’s outlook.

General (non-specific) symptoms

Other possible symptoms of HL include:

• Itching skin
• Feeling tired (fatigue)
• Loss of appetite

Sometimes the only symptom might be feeling tired all the time.

Cough, trouble breathing, chest pain

If HL affects lymph nodes inside your chest, the swelling of these nodes might press on the windpipe (trachea) and make you cough or even have trouble breathing, especially when lying down. Some people might have pain behind the breast bone.

If you have symptoms

Having one or more of the symptoms above doesn’t mean you definitely have HL. In fact, many of these symptoms are much more likely to be caused by other problems, like an infection. Still, if you or your child has any of these symptoms, have them checked by a doctor so that the cause can be found and, if needed, treated.

Cancer survivors can be affected by a number of health problems, but often a major concern is facing cancer again. If the same kind of cancer comes back after treatment it's called a recurrence . But some cancer survivors might develop another type of cancer later (usually more than 10 years after treatment). This is called a second cancer.

People who have had Hodgkin lymphoma (HL) can get any type of second cancer, but research has found they have an increased risk of certain cancers. These tend to be linked to the treatments used for HL. Chemo is linked to blood cancers, and radiation therapy is linked to cancers in the organs in the area that was treated. The cancers include:

• Leukemia
• Myelodysplastic syndrome (MDS)
• Non-Hodgkin lymphoma
• Breast cancer (in women)
• Lung cancer
• Thyroid cancer
• Cancer of the lip and tongue
• Salivary gland cancer
• Stomach cancer
• Colon cancer
• Liver cancer
• Pancreas cancer
• Bone cancer
• Soft tissue cancer
• Anal cancer
• Cancer of the uterus
• Cancer of the ureter (the tube that connects the kidney and the bladder)
• Melanoma of the skin
• Kaposi sarcoma

The increased risk of many of these cancers are linked to treatment with radiation. For example:

• Women who have had chest radiation (especially before age 30) have been found to have a higher risk of breast cancer.
• Radiation to the neck has been linked to a higher risk of thyroid cancer.
• Radiation to the chest has been linked to a higher risk of lung cancer.

But over time, the use of radiation to treat HL has changed a lot. Radiation is now given in lower doses, and often only to the areas directly affected by the lymphoma. The risks with modern radiation treatment are likely to be lower, still long-term studies are needed to be sure.

Chemotherapy (chemo), especially with drugs called alkylating agents (such as dacarbazine and cyclophosphamide) has been linked with a higher risk of several types of cancer, including leukemias. Today, alkylating agents are used less often and at much lower doses, so these risks are probably not as high as they were in the past, but, again, long-term follow-up studies are needed to be sure. 

Follow-up care after Hodgkin lymphoma treatment

After completing treatment for HL, you should still see your doctor regularly and may have tests to look for signs that the cancer has come back. Let them know about any new symptoms or problems, because they could be caused by the lymphoma coming back, by a new disease, or by second cancer.  

Women who were treated with radiation therapy to the chest (such as mantle field radiation therapy ) before age 30 have an increased risk of breast cancer. The American Cancer Society recommends yearly breast cancer screening with breast MRIs along with mammograms and clinical breast exams beginning at age 30 for these women. Some experts recommend that screening start 8 to 10 years after treatment or at age 40 (whichever is earlier).

The Children’s Oncology Group has guidelines for the follow-up of patients treated for cancer as a child, teen, or young adult, including screening for second cancers. These can be found at www.survivorshipguidelines.org.

Survivors of HL should also follow the American Cancer Society guidelines for the early detection of cancer, such as those for colorectal and lung cancer. Most experts don’t recommend any other testing to look for second cancers unless you have symptoms.

Can I lower my risk of getting a second cancer?

There are steps you can take to help lower your risk and stay as healthy as possible. For example, it’s important to stay away from tobacco products. Smoking increases the risk of many cancers, including some of the second cancers seen in people who have had Hodgkin lymphoma.

To help maintain good health, HL survivors should also:

• Get to and stay at a healthy weight
• Be physically active
• Eat a healthy diet, with an emphasis on plant foods
• Limit alcohol to no more than 1 drink per day for women or 2 per day for men

These steps may also lower the risk of other health problems, including heart disease.

See Second Cancers in Adults for more information.

The American Cancer Society’s estimates for Hodgkin lymphoma in the United States for 2018 are:

• About 8,500 new cases (3,660 in females and 4,840 in males)
• About 1,050 deaths (430 females, 620 males) from this cancer

Both children and adults can develop Hodgkin lymphoma, but it's most common in early adulthood (especially in a person’s 20s). The risk of Hodgkin lymphoma rises again in late adulthood (after age 55). Overall, the average age at the time of diagnosis is 39.

Hodgkin lymphoma is rare in children younger than 5 years old. But it's the most common cancer diagnosed in teenagers ages 15 to 19 years.

Survival rates have improved in the past few decades, largely due to advances in treatment. The 5-year relative survival rate for all patients diagnosed with Hodgkin lymphoma is now about 86%. Certain factors such as the stage (extent) of Hodgkin lymphoma and a person’s age affect these rates. For more, see Survival Rates for Hodgkin Lymphoma by Stage.

Visit the American Cancer Society’s Cancer Statistics Center for more key statistics.

A risk factor is anything that affects your chance of getting a disease such as cancer. Different cancers have different risk factors. Some cancer risk factors, like smoking or being overweight, can be changed. Others, like a person’s age or family history, can’t be changed.

A few risk factors make a person more likely to develop Hodgkin lymphoma (HL), but it’s not always clear why these factors increase risk. Having a risk factor, or even many, does not mean that you'll definitely get the disease. And many people who get HL have few or no known risk factors.

Epstein-Barr virus infection/mononucleosis

The Epstein-Barr virus (EBV) causes infectious mononucleosis (often called mono). People who have had mono have an increased risk of HL. But even though the risk is higher than for people who haven't had mono, it is still very small (about 1 in 1,000).

The exact role of EBV in the development of HL isn't clear. Many people are infected with EBV, but very few develop HL. Parts of the virus are found in Reed-Sternberg cells in about 1 out of 4 people with classic HL in the US. But most people with HL have no signs of EBV in their cancer cells. 

Age

People can be diagnosed with HL at any age, but it's most common in early adulthood (especially in a person’s 20s) and in late adulthood (after age 55).

Gender

HL occurs slightly more often in males than in females.

Family history

Brothers and sisters of young people with this disease have a higher risk for HL. The risk is very high for an identical twin of a person with HL. But a family link is still uncommon – most people with HL do not have a family history of it.

It’s not clear why family history might increase risk. It might be because family members have similar childhood exposures to certain infections (such as Epstein-Barr virus), because they share inherited gene changes that make them more likely to get HL, or some combination of these factors.  

Weakened immune system

The risk of HL is increased in people infected with HIV, the virus that causes AIDS.

People who take medicines to supress the immune system after an organ transplant and people with auto-immune diseases are also at higher than normal risk for HL.

Some researchers think that infection with the Epstein-Barr virus sometimes causes DNA changes in B lymphocytes. In some cases, this leads to the development of Reed-Sternberg cells, which are the cancer cells in HL.

DNA is the chemical in our cells that makes up our genes, which control how our cells work. We look like our parents because they are the source of our DNA. But DNA affects more than just how we look.

Some genes control when cells grow, divide into new cells, and die:

• Genes that help cells grow, divide, and stay alive are called oncogenes.
• Genes that slow down cell division or cause cells to die at the right time are called tumor suppressor genes.

Cancers can be caused by DNA changes that turn on oncogenes or turn off tumor suppressor genes.

Scientists have found many gene changes in Reed-Sternberg cells that help the cells grow and divide or live longer than they should. Reed-Sternberg cells also make substances called cytokines, which attract many other cells into the lymph node, causing it to swell (enlarge). In turn, these non-cancerous cells then release substances that help Reed-Sternberg cells grow.

Despite the advances in knowing how cancer cells work, scientists do not yet know what sets off these processes. An abnormal reaction to infection with EBV or to other infections may be the trigger in some cases. But a lot more research is needed to understand what causes Hodgkin lymphoma.

Screening tests or exams are used to look for disease in people who have no symptoms. At this time, there are no widely recommended screening tests for Hodgkin lymphoma (HL). This is because no screening test has been shown to lower the risk of dying from this cancer. Still, in some cases HL can be found early. 

The best way to find HL early is to be on the lookout for possible symptoms. The most common symptom is enlargement or swelling of one or more lymph nodes, causing a lump or bump under the skin which usually doesn't hurt. It's most often on the side of the neck, in the armpit, or in the groin. More often this is caused by something like an infection, not HL, but it’s important to have such lumps checked by a doctor. 

Careful, regular medical check-ups may be helpful for people with known risk factors for HL, such as a strong family history. These people do not often get HL, but they (and their doctors) should know about any possible symptoms and signs they might have.

Each type of treatment for Hodgkin lymphoma (HL) has side effects that could last for months or longer. And there are some that might not show up until long after treatment has ended. Some side effects, like loss of fertility (ability to have children), heart damage, and low thyroid hormones, can be permanent.

Because so many people are now living for a long time after their treatment, watching for these late and long-lasting side effects is very important. Be sure to talk to your treatment team about what these possible effects might be so you know what to watch for and report to the doctor.

Second cancers

One uncommon but very serious side effect of HL treatment is developing a second type of cancer later on. People who've had HL have a higher risk for many types of cancer. See Second Cancers After Hodgkin Lymphoma for more on this.

Fertility issues

A possible long-term effect of chemotherapy and radiation therapy , especially in younger patients, is reduced or lost fertility. For example, some chemo drugs can affect a male’s ability to make sperm, which might be short-term or permanent. If the patient is old enough and is going to get chemo drugs that can affect fertility, sperm banking should be considered before chemo starts.

Likewise, women may stop having menstrual periods with chemotherapy. This may or may go back to normal; some women go into early menopause after treatment. Radiation to the lower abdomen (belly) can cause infertility unless the ovaries are surgically moved outside the radiation field beforehand. Moving the ovaries does not affect cure rates because HL almost never spreads to the ovaries.

To learn more, see Fertility and Women With Cancer and Fertility and Men With Cancer.

Infections

For unknown reasons, the immune systems of people with HL often do not work the way they shuold. Treatments such as chemo, radiation, or removal of the spleen (splenectomy) can add to this problem. (Splenectomy was once commonly done, but is now rarely needed.) Patients who have their spleen removed should get vaccinated against certain bacteria.

All people who have had HL should keep up with their flu shots . Getting vaccinations and treating infections right away are very important.

Thyroid problems

Radiation to the chest or neck to treat HL can affect the thyroid gland, causing it to make less thyroid hormone. People with this condition, known as hypothyroidism, may need to take thyroid medicine every day for the rest of their lives. Anyone who got radiation to the neck or upper chest should have their thyroid function checked with blood tests at least once a year.

Heart disease and stroke

People who have had radiation to the chest have a higher risk of heart disease and heart attacks. Though this has become less of a problem with more modern radiation techniques. Some chemo drugs such as doxorubicin (Adriamycin^®) can also cause heart damage. And sometimes the damage isn't seen until more than 10 years after treatment. Your doctor might want to check your heart function for many years after treatment.

Radiation to the neck increases the chance of stroke because it can damage the blood vessels in the neck that supply the brain. Ultrasound may be used to check the health of the blood vessels in your neck.

Smoking, high cholesterol, and high blood pressure (hypertension) also increase the risk of heart disease and stroke. It’s important to do what you can to help lower your risk, such as not smoking, staying at a healthy weight, being active, and eating a healthy diet. It’s also important to have regular check-ups with your doctor and get treated if you have high blood pressure.

Lung damage

The chemo drug bleomycin can damage the lungs, as can radiation therapy to the chest. This can lead to problems like shortness of breath, which might not show up until years after treatment. Smoking can also seriously damage the lungs, so it’s important that people who have had these treatments do not smoke.

Special concerns in childhood Hodgkin lymphoma survivors

Just as the treatment of childhood HL requires a very specialized approach in children, so does follow-up and monitoring for relapse (HL coming back) and late effects of treatment. Careful follow-up after treatment is very important and it should be done for the rest of the child's life. The earlier problems are found, the more likely it is they can be treated effectively.

Along with physical side effects (including those listed above), survivors of childhood lymphoma may have emotional or psychological issues. They also may have some problems with normal functioning and school work. These can often be addressed with support and encouragement. Doctors and other members of the health care team can also often recommend special support programs and services to help children after treatment.

To help increase awareness of late effects and improve follow-up care for childhood cancer survivors throughout their lives, the Children’s Oncology Group (COG) has developed long-term follow-up guidelines for survivors of childhood cancers. These guidelines can help you know what to watch for, what types of health screening should be done, and how late effects may be treated.

It’s very important to discuss possible long-term problems with your child’s health care team, and to make sure there's a plan in place to watch for these problems and treat them, if needed. To learn more, ask your child’s doctors about the COG survivor guidelines. You can also download them for free on the COG website: www.survivorshipguidelines.org. The guidelines are written for health care professionals. Patient versions of some of the guidelines are available (as Health Links) on the site as well, but we urge you to discuss them with a doctor.

For more about some of the possible long-term effects of treatment, see Children Diagnosed With Cancer: Late Effects of Cancer Treatment.

For many people with Hodgkin lymphoma (HL), treatment can cure the lymphoma. Completing treatment can be both stressful and exciting. You may be relieved to finish treatment, but find it hard not to worry about the lymphoma coming back. (When cancer comes back after treatment, it's called a recurrence .) This is a very common concern if you’ve had cancer. 

For some people, HL may never go away completely. These people may get regular treatments with chemotherapy, radiation therapy, or other therapies to help control it for as long as possible and to help relieve symptoms. Learning to live with HL that doesn't go away can be difficult and very stressful.

Ask your doctor for a survivorship care plan

Talk with your doctor about developing a survivorship care plan for you. This plan might include:

• A suggested schedule for follow-up exams and tests
• A schedule for other tests you might need in the future, such as early detection (screening) tests for other types of cancer, or tests to look for long-term health effects from the HL or its treatment
• A list of possible late- or long-term side effects from your treatment, including what to watch for and when you should contact your doctor
• Diet and physical activity suggestions

Follow-up after Hodgkin Lymphoma

Even if you’ve completed treatment, your doctors will still want to watch you closely. It’s very important to go to all your follow-up appointments because HL can sometimes come back even many years after treatment.

Some treatment side effects might last a long time or might not even show up until years after you have finished treatment (see Late and Long-term Side Effects of Hodgkin Lymphoma Treatment). These doctor visits are a good time to ask questions and talk about any changes or problems you notice or concerns you have.

Exams and tests

During follow-up visits, the doctor will ask about symptoms, do physical exams, and may do blood tests or imaging tests such as PET or CT scans . Doctor visits are usually recommended every 3 to 6 months for the first several years after treatment. Over time, the length of time between visits can be increased, but even after 5 years you should see your oncologist at least once a year.

People whose HL doesn’t go away with treatment will have a follow-up schedule that's based on their specific situation.

Keeping health insurance and copies of your medical records

Even after treatment, it’s very important to keep health insurance. Tests and doctor visits cost a lot, and even though no one wants to think of their cancer coming back, this could happen.

At some point after your treatment, you might find yourself seeing a new doctor who doesn’t know your medical history. It’s important to keep copies of your medical records to give your new doctor the details of your diagnosis and treatment. Learn more in Keeping Copies of Important Medical Records.

Can I lower my risk of Hodgkin lymphoma progressing or coming back?

If you have (or have had) Hodgkin lymphoma, you probably want to know if there are things you can do that might lower your risk of the lymphoma coming back, such as exercising, eating a certain type of diet, or taking nutritional supplements. Unfortunately, it’s not yet clear if there are things you can do that will help.

Adopting healthy behaviors such as not smoking, eating well, getting regular physical activity, and staying at a healthy weight might help, but no one knows for sure. However, we do know that these types of changes can have positive effects on your health that can extend beyond your risk of HL or other cancers.

About dietary supplements

So far, no dietary supplements (including vitamins, minerals, and herbal products) have been shown to clearly help lower the risk of HL progressing or coming back. This doesn’t mean that no supplements will help, but it’s important to know that none have been proven to do so.

Dietary supplements are not regulated like medicines in the United States – they don't have to be proven effective (or even safe) before being sold, although there are limits on what they’re allowed to claim they can do. If you’re thinking about taking any type of nutritional supplement, talk to your health care team. They can help you decide which ones you can use safely while avoiding those that might be harmful.

If Hodgkin lymphoma comes back

If Hodgkin lymphoma does come back (recurs) at some point, your treatment options will depend on where the lymphoma is, what treatments you’ve had before, how long it’s been since treatment, and your current health and preferences. For more on how recurrent HL is treated, see Treating Classic Hodgkin Lymphoma, by Stage.

For more general information, see Understanding Recurrence.

Could I get a second cancer after treatment?

People who’ve had Hodgkin lymphoma can still get other cancers. In fact, HL survivors are at higher risk for getting some other types of cancer. Learn more in Second Cancers After Hodgkin Lymphoma.

Getting emotional support

Some amount of feeling depressed, anxious, or worried is normal when lymphoma is a part of your life. Some people are affected more than others. But everyone can benefit from help and support from other people, whether friends and family, religious groups, support groups, professional counselors, or others. Learn more in Life After Cancer.