Frequently Asked Questions About Hodgkin’s Disease
Q. What is Hodgkin's disease?
A. Hodgkin's disease is a type of lymphoma. Lymphomas are cancers that develop in the lymphatic system, part of the body's immune system. The job of the lymphatic system is to help fight diseases and infection.
The lymphatic system includes a network of thin tubes that branch, like blood vessels, into the tissues throughout the body. Lymphatic vessels carry lymph, a colorless, watery fluid that contains infection-fighting cells called lymphocytes. Along this network of vessels are groups of small, bean-shaped organs called lymph nodes that filter the lymph as it passes through the nodes. Clusters of lymph nodes are found in the underarm, groin, neck and abdomen. Other parts of the lymphatic system are the spleen, thymus, tonsils and bone marrow.
Like all types of cancer, Hodgkin's disease affects the body's cells. Healthy cells grow, divide and replace themselves in an orderly manner. This process keeps the body in good repair. In Hodgkin's disease, cells in the lymphatic system grow abnormally and can spread to other organs. As the disease progresses, the body is less able to fight infection.
Hodgkin's disease is rare. It accounts for less than 1 percent of all cases of cancer in this country. It is most often seen in young people aged 15 to 34 and in people over the age of 55. Other cancers of the lymphatic system are called non-Hodgkin's lymphomas; information about these can be found in a separate section of this Web site.
Q. What are the signs and symptoms of Hodgkin's?
A. The most common symptoms of Hodgkin's disease are:
Painless swelling in the lymph nodes in the neck, underarm or groin
These symptoms are not sure signs of cancer. They may also be caused by many common illnesses, such as the flu or other infections. It is important to see a doctor if any of these symptoms lasts longer than two weeks. Any illness should be diagnosed and treated as early as possible, and this is especially true of Hodgkin's disease.
Q. How is Hodgkin's disease diagnosed?
A. If Hodgkin's disease is suspected, the doctor will ask about your medical history and will do a thorough physical exam. Blood tests and x-rays of the chest, bones, liver and spleen will also be done.
Tissue from an enlarged lymph node will be removed. This is known as a biopsy. It is the only sure way to tell if cancer is present. A pathologist will look at the tissue under the microscope for Reed-Sternberg cells, abnormal cells that are usually found with Hodgkin's disease.
When Hodgkin's disease is diagnosed, the doctor needs to know the stage, or extent, of the disease. Knowing the stage is very important for planning treatment. The stage indicates where the disease has spread and how much tissue is affected. In staging, the doctor checks:
- The number and location of affected lymph nodes
- Whether the affected lymph nodes are above, below or on both sides of the diaphragm (the thin muscle under the lungs and heart that separates the chest from the abdomen)
- Whether the disease has spread to the bone marrow, to the spleen or to places outside the lymphatic system, such as the liver
- In staging, the doctor usually orders several tests, including biopsies of the lymph nodes, liver and bone marrow. Many patients have lymphangiograms, x-rays of the lymphatic system using a special dye to outline the lymph nodes and vessels. Another test is computed tomography (also called CT or CAT Scan), a series of x-rays of cross-sections of the body.
Each stage for Hodgkin's disease is further divided by an "A" or "B," based on whether there are certain symptoms called B symptoms. B symptoms include the following:
Loss of more than 10 percent of weight in the previous six months
Fever without any known cause other than Hodgkin's disease
Night sweats that leave the body soaked
For example, if a patient had stage I disease without any B symptoms, the patient would have stage IA disease; if the patient had stage I disease with B symptoms, the patient would have stage IB disease.
Q. How is Hodgkin's disease treated?
A. Treatment decisions for Hodgkin's disease are complex. Before starting treatment, the patient might want a second doctor to review the diagnosis and treatment plan.
Methods of Treatment:
Treatment for Hodgkin's disease usually includes radiation therapy or chemotherapy. Sometimes, both are given. Treatment decisions depend on the stage of disease, its location in the body, which symptoms are present, and the general health and age of the patient. (Treatment of children with Hodgkin's disease is more complex and is not discussed here.)
Patients are often referred to doctors or medical centers that have special interest in the different treatments of Hodgkin's disease. Patients may also want to talk with their doctor about taking part in a research study of new treatment methods. These studies are called clinical trials.
Radiation therapy uses high-energy rays to damage cancer cells and stop their growth. Radiation therapy is generally given in a hospital or clinic. Most often, patients receive radiation therapy five days a week for several weeks as outpatients.
Chemotherapy is the use of drugs to kill cancer cells. To treat Hodgkin's disease, the doctor prescribes a combination of drugs that work together. The drugs may be given in different ways: Some are given by mouth; others are injected into an artery, vein, or muscle. The drugs travel through the bloodstream to almost every part of the body. Chemotherapy is usually given in cycles: a treatment period followed by a rest period, then another treatment period, and so on.
Q. What are the side effects of treatment?
A. The methods used to treat Hodgkin's disease are very powerful. The treatment often causes side effects, both short-term and permanent. Side effects depend on the type of treatment and on the part of the body being treated. Also, each patient may respond differently.
During radiation therapy, patients may become unusually tired as therapy continues. Testing as much as possible is important. Skin reactions (redness or dryness) in the area being treated are also common. Patients should be gentle with the treated area of skin. Lotions and creams should not be used without the doctor's advice. When the chest is treated, patients may have a dry, sore throat and may have trouble swallowing. Sometimes, they have shortness of breath or a dry cough. Radiation treatment to the lower abdomen may cause nausea, vomiting, or diarrhea. Some patients have tingling or numbness in their arms, legs and lower back. These side effects gradually disappear when treatment is over.
The side effects of chemotherapy depend mainly on the drugs that are given. In general, anticancer drugs affect rapidly growing cells, such as blood cells that fight infection, cells that line the digestive tract, and cells in hair follicles. As a result, patients may have side effects such as lower resistance to infection, nausea, vomiting or mouth sores. They may also have less energy and may lose their hair.
Loss of appetite can be a problem for patients receiving radiation therapy or chemotherapy. Researchers are learning that patients who eat well may be better able to tolerate the side effects of their treatment. Therefore, nutrition is an important part of the treatment plan. Eating well means getting enough calories to prevent weight loss and having enough protein in the diet to build and repair skin, hair, muscles and organs. Many patients find that eating several small meals and snacks throughout the day is easier than trying to have three large meals.
Treatment for Hodgkin's disease can cause fertility problems. Women's menstrual periods may stop. Periods are more likely to return in younger women. In men, both Hodgkin's disease and its treatment can affect fertility. Younger men are more likely to regain their fertility. Sperm banking before treatment may be an option for some men.
The side effects that patients have during cancer therapy vary from person to person and may even be different from one treatment to the next. Doctors, nurses and dietitians can explain the side effects of cancer treatment and can suggest ways to deal with them.
Q. What should I ask my doctor about treatment if I am diagnosed with Hodgkin's disease?
A. Here are some questions you may want to ask:
- What are the expected benefits of treatment?
- Would a clinical trial be appropriate for me?
- What are the risks and possible side effects of treatment?
- Will treatment affect my fertility?
- Can I keep working during treatment?
- Will I have to change my normal activities?
How often will I need checkups?
Your doctor is the best person to give advice about working or limiting other activities, but it may be hard for some people to talk to the doctor about their feelings and other very personal matters. Many patients find it helpful to talk with others who are facing similar problems. This kind of help is available through cancer-related support groups. It may be helpful to talk with a nurse, social worker, counselor or member of the clergy. Living with any serious disease can be a difficult challenge.
Q. What should my follow-up care be like?
A. Regular follow-up exams are very important for anyone who has been treated for Hodgkin's disease. The doctor will continue to watch the patient closely for several years. Generally, checkups include a careful physical exam, x-rays, blood tests, and other laboratory tests. Patients treated for Hodgkin's disease have an increased risk of developing other types of cancer later in life, especially leukemia. Patients should follow their doctor's recommendations on health care and checkups. Having regular checkups allows problems to be detected and treated promptly if they should arise.
Support for Cancer Patients
Adapting to the changes brought about by having cancer is easier for both patients and their families when they have helpful information and support services. The social services office at the hospital or clinic can suggest local and national agencies that will help with emotional support, financial aid, transportation, home care or rehabilitation. The American Cancer Society and the Leukemia Society of America are two nonprofit organizations that offer a variety of services to patients and their families. Their local offices may be listed in the telephone book.
What the Future Holds
More than 8 million Americans living today have had some type of cancer. Thirty years ago, few patients with Hodgkin's disease recovered from their illness. Now, because of modern radiation therapy and combination chemotherapy, more than 75 percent of all newly diagnosed Hodgkin's disease patients are curable. The chances for recovery continue to improve as scientists find new and more effective treatments.
Doctors often talk about "surviving" cancer or they my use the word "remission" rather than "cure". Even though many patients recover completely, doctors use these terms because Hodgkin's disease can show up again. Patients are naturally concerned about their future and may try to use statistics they have read or heard about to figure out their own chances of being cured. It is important to remember that statistics are averages based on large numbers of people, and no two cancer patients are alike. Only the doctor who takes care of a patient knows enough about that person to discuss prognosis (probable outcome of disease/recovery).
The Promise of Cancer Research
Scientists at hospitals and medical centers throughout the country are studying Hodgkin's disease. They are trying to learn more about the possible causes of the disease and how it might be prevented.
In addition, scientists are exploring new methods of treatment, including new drugs, drug combinations, and combinations of radiation therapy and chemotherapy. Other methods, such as blood and marrow transplantation and biological therapy, are being studied with some Hodgkin's disease patients in clinical trials. These trials are designed to answer scientific questions and to find out whether a promising new treatment is safe and effective. Patients who take part in clinical trials make an important contribution to medical science and may have the first chance to benefit from improved treatment methods.
Hodgkin's disease patients may consider participating in a trial and should discuss this possibility with their doctors.