Supportive care for Hodgkin lymphoma

Supportive care helps people meet the physical, practical, emotional and spiritual challenges of Hodgkin lymphoma (HL). It is an important part of cancer care. There are many programs and services available to help meet the needs and improve the quality of life of people living with cancer and their loved ones, especially after treatment has ended.

Recovering from HL and adjusting to life after treatment is different for each person, depending on where the cancer was in your body, the stage of the cancer, the type of treatment and many other factors. The end of cancer treatment may bring mixed emotions. Even though treatment has ended, there may be other issues to deal with, such as coping with long-term side effects. A person who has been treated for HL may have the following concerns.

How a person feels about themselves is called self-esteem. Body image is how a person sees their own body. HL and its treatments can affect a person’s self-esteem and body image. Often this is because cancer or cancer treatments may result in body changes, such as:

• scars
• hair loss
• skin changes
• changes in body weight
• lymphedema

Some of these changes can be temporary. Others will last for a long time or be permanent.

Find out more about how to cope with problems of self-esteem and body image.

You may feel very tired if your red blood cell count is low (called anemia). Red blood cell counts can be low when the bone marrow is affected by HL or its treatments.

Fatigue can also be a symptom of other problems that people with HL may have, including poor nutrition, sleep problems, anxiety or depression.

Once they know what is causing your fatigue, your healthcare team can suggest ways to treat it. Treatments may include:

• iron pills if your iron is low
• a blood transfusion for anemia
• nutritional supplements
• sleep medicines
• antidepressants

Find out more about fatigue and anemia.

You can develop infections if you have a low white blood cell count (called neutropenia). White blood cell counts can be low when HL or its treatments affect the bone marrow. Your healthcare team may give you medicines to prevent infection if you have a low white blood cell count. They will also give you medicines to treat infections, such as antibiotics, antivirals and antifungals.

Sometimes the immune systems of people with HL don’t work properly. Treatments for HL, such as chemotherapy, radiation therapy or removal of the spleen (splenectomy) can also affect the immune system. People who have had their spleen removed may need certain vaccinations to help increase their immunity.

Preventing infection is important for people with HL. Having good hygiene, protecting your skin and maintaining good general health are some ways to help prevent infection. It is also important to keep your immunizations up to date to help prevent some infections.

Find out more about infection, low white blood cell count and immunizations.

Radiation to the head or neck area can increase the risk for developing dental cavities after treatment. This is because radiation can affect the salivary glands so they don’t make enough saliva. Whether there is enough saliva depends on the dose of radiation and the number of salivary glands in the treatment area. Less saliva in the mouth can lead to cavities and gum disease. These problems can cause tooth pain, tooth decay and swollen, painful gums.

You can help prevent dental cavities by:

• getting a complete dental checkup and cleaning
• having any cavities filled before treatment begins
• using good daily oral hygiene and getting fluoride treatments during and after treatment
• getting regular checkups and cleanings and treating any problems that develop after treatment for HL is finished

People who receive radiation therapy to the neck have a higher risk of developing hypothyroidism later in life. Hypothyroidism is when the thyroid doesn’t make enough thyroid hormone to keep the body working properly. It usually develops 3 to 4 years after radiation therapy, but it can develop even later.

The healthcare team will regularly check how well your thyroid is working. Some people need to take thyroid hormone replacement to regulate the thyroid.

Certain combinations of chemotherapy drugs and radiation therapy to the pelvis and surrounding areas can affect your fertility (the ability to get or stay pregnant or get someone else pregnant).

Women who are closer to their natural menopause have the greatest risk of becoming infertile because some treatments for HL may cause premature menopause. Younger women treated for HL may have symptoms of menopause and become temporarily infertile. They have a better chance of being fertile again after treatment than older women.

Some treatments for HL lower or stop sperm production in the testicles, which can cause temporary or permanent infertility in men.

Talk to your healthcare team about your fertility before you start treatment. There may be ways to protect your fertility before or during treatment. Find out more about fertility problems and treatment-induced menopause.

Radiation to the chest and certain chemotherapy drugs, such as doxorubicin, can damage the heart. Heart problems that may develop include:

• inflammation of the protective sac around the heart (called pericarditis)
• narrow or blocked blood vessels of the heart (called coronary artery disease, or CAD)
• scarred or weak heart muscle (called cardiomyopathy)
• a buildup of fluid in the sac around the heart (called pericardial effusion)

If the heart muscle is weak (called congestive heart failure) or the heart has an irregular beat, it can cause shortness of breath and swelling of the hands or feet.

Your healthcare team will take steps to prevent, find and treat these heart problems. Find out more about heart problems.

Certain chemotherapy drugs, such as bleomycin, can damage the lungs. Radiation therapy to the lungs can also cause lung problems. Lung problems include:

• inflammation of the lungs (called pneumonitis)
• scarring or stiffening of the lung tissue (called pulmonary fibrosis)

Radiation pneumonitis usually develops 1 to 3 months after radiation therapy begins, but it can develop several months after treatment is completed. Pulmonary fibrosis can develop months or years after radiation therapy. These problems can cause coughing or shortness of breath.

Find out more about lung problems.

In rare cases, a different type of cancer may develop after treatment for HL. For example, breast cancer can develop in women who have radiation therapy to the chest. Lung cancer can develop in people who smoke and have radiation to the chest. Acute myelogenous leukemia (AML) or myelodysplastic syndrome can develop in people who have a stem cell transplant.

The possibility of developing a second cancer is frightening, but the benefit of treating HL with chemotherapy or radiation therapy usually far outweighs the risk of developing another cancer. Whether another cancer develops depends on:

• the type of chemotherapy drugs
• the dose of chemotherapy drugs
• the length of treatment
• if both chemotherapy and radiation therapy were given

You can help lower your risk of developing a second cancer by living a healthy lifestyle and working with your healthcare team to develop a wellness plan for staying healthy. Routine screening to find a second cancer early, as well as being aware of changes in your health and reporting problems to your doctor, are important parts of follow-up care after cancer treatment.

Find out more about a wellness plan.

During treatment, the focus is getting through treatment and it may be hard to stay positive. Finances, work and relationships may be a concern and can cause anxiety. When treatment is finished, you may have other thoughts and unexpected feelings, including:

• concern that the HL will come back
• worry about the effects HL will have on your family, friends and career
• questions about your self-worth and identity
• worries about changes in your appearance
• concern about adapting to lifestyle changes
• feeling anxious because you have less contact with the healthcare team

Talk to your healthcare team about your concerns. They can support you and help you cope with HL in different ways, including helping you:

• do appropriate physical activities
• maintain good nutrition
• find a good balance between being active and getting enough rest
• communicate openly and honestly about your fears and concerns
• find the right support and treatment for emotional distress, such as counselling or medicines

Learn more about life after cancer treatment and how to cope with your feelings and concerns.

To make decisions that are right for you, ask your healthcare team questions about supportive care.