Hodgkin lymphoma, also called Hodgkin's disease, is one category of lymphoma. Lymphomas are cancers of the lymph system. This system includes the lymph nodes and the lymphoid blood cells, or lymphocytes, made within them. Lymph nodes are small, bean-shaped organs found in clusters in the abdomen, groin, pelvis, underarms, and neck. Other parts of the lymph system include the spleen, which makes lymphocytes and filters blood; the thymus, an organ under the breastbone; and the tonsils, located in the throat. Lymphocytes play an important role in fighting infection. B-lymphocytes (also called B-cells) make antibodies to fight bacteria, and T-lymphocytes (also called T-cells) kill viruses and foreign cells and trigger the B-cells to make antibodies.
Changes that occur in the tumor cell's DNA may affect the processes that normally decide cell growth and death. When this occurs, these cells can accumulate, forming a tumor.
Hodgkin lymphoma most often starts in two places: the neck (cervical lymph nodes) and an area between the lungs, breastbone, and spine (mediastinal lymph nodes). Because there is lymph tissue in many parts of the body, Hodgkin lymphoma can start in any of the lymph nodes. If the cancer spreads outside the lymphatic system, Hodgkin lymphoma most often involves the lungs, bones, bone marrow, and liver.
Types of Hodgkin lymphoma
There are four types of Hodgkin lymphoma. These are often treated in a similar manner, although research is emerging that will lead to new treatment approaches for some types.
Nodular sclerosis Hodgkin disease (NSHD). This is the most common type of Hodgkin lymphoma in the United States and other developed countries. It is most common in girls. Tumors are often very bulky, begin in the neck, chest, or abdomen, and may spread to the lungs.
Mixed cellularity Hodgkin disease (MCHD). This type is common in people who have had the Epstein-Barr virus (the virus that causes mononucleosis) and is more common in boys. It is also the most common type of Hodgkin lymphoma seen in those with human immunodeficiency virus (HIV), the virus that causes acquired immune deficiency syndrome (AIDS). It usually begins in the lymph nodes in the abdomen or in the spleen.
Lymphocyte predominant Hodgkin disease (LPHD). In this type, cells under the microscope resemble normal lymphocytes. It usually begins in the lymph nodes of the underarm, neck, and groin, and less commonly involves the lymph nodes in the chest. In young children, the boy-to-girl ratio is approximately 10:1.
Lymphocyte depleted Hodgkin disease (LDHD). This is a very rare, but aggressive type. It appears in the lymph nodes of the abdomen or pelvis, usually skipping the lymph nodes in the neck or underarms. LDHD is very uncommon in children.
There are three different forms of Hodgkin lymphoma:
A childhood form (in children 14 years or younger)
A young adult form (in people 15 to 34 years old)
An older adult form (in people 55 to 74 years old)
Hodgkin lymphoma is rare in children younger than five years old in the United States. Hodgkin disease most often occurs in people between 15 and 40 years old and after age 55.
This section covers Hodgkin lymphoma in children and adolescents. For more information on adult Hodgkin lymphoma, please read the Cancer.Net Guide to Lymphoma, Hodgkin.
Statistics
Hodgkin lymphoma accounts for 3.7% of all cancers in children from birth to age 14 in the United States, but it is the most common cancer in people ages 15 to 19. The five-year relative survival rate (the percentage of patients who survive at least five years after the cancer is detected, excluding those who die from other diseases) for children with Hodgkin lymphoma is 95%.
Cancer survival statistics should be interpreted with caution. These estimates are based on data from thousands of cases of this type of cancer, but the actual risk for a particular individual may differ. It is not possible to tell a person how long he or she will live with childhood Hodgkin lymphoma. Because the survival statistics are measured in five-year (or sometimes one-year) intervals, they may not represent advances made in the treatment or diagnosis of this cancer.
Statistics adapted from the American Cancer Society's publication, Cancer Facts and Figures 2008.
A risk factor is anything that increases a person's chance of developing cancer. Some risk factors can be controlled, such as smoking, and some cannot be controlled, such as age and family history. Although risk factors can influence the development of cancer, most do not directly cause cancer. Some people with several risk factors never develop cancer, while others with no known risk factors do.
The cause of Hodgkin lymphoma is unknown, although infection with the Epstein-Barr virus may trigger the development of the cancer in approximately 30% of children and teens. People with immune system problems also have a higher risk of developing Hodgkin lymphoma. This group includes:
Children born with the hereditary condition of ataxia telangiectasia (due to immune system problems)
Children with HIV/AIDS
Children who are taking immune system lowering drugs following an organ transplantation
Children with Hodgkin lymphoma may experience the following symptoms:
Painless swelling of lymph nodes in the neck, underarm, or groin that doesn't go away in a few weeks
Unexplained fever (without other signs of infection) that doesn't go away
Itching
Fatigue
Unexplained weight loss
Night sweats (usually drenching)
If the lymph nodes in the chest are affected, they may press on the windpipe and cause coughing or problems breathing.
Sometimes, children with Hodgkin lymphoma do not show any of these symptoms. Or, the symptoms may be caused by a medical condition that is not cancer. If you are concerned about a symptom on this list, please talk with your child's doctor.
Doctors use many tests to diagnose cancer and determine if it has metastasized (spread) Some tests may also determine which treatments may be the most effective. For most types of cancer, a biopsy is the only way to make a definitive diagnosis of cancer. If a biopsy is not possible, the doctor may suggest other tests that will help make a diagnosis. Imaging tests may be used to find out whether the cancer has metastasized. Your doctor may consider these factors when choosing a diagnostic test:
Age and medical condition
The type of cancer
Severity of symptoms
Previous test results
The following tests may be used to diagnose Hodgkin lymphoma:
Physical examination. Children tend to have larger lymph nodes than adults. Usually, a child will have enlarged lymph nodes for several weeks or months before a doctor suspects Hodgkin lymphoma, which is uncommon in children. The doctor will first look for signs of more common infection that may cause the lymph nodes to swell and may prescribe antibiotics.
If swelling in the lymph nodes doesn't go down after a course of antibiotics, the swelling may be caused by something other than an infection. The doctor will do a physical examination of all the lymph node areas, liver, and spleen, which may be enlarged in children with Hodgkin lymphoma.
Blood tests may also be done to check blood counts and evaluate how the liver and kidneys are working. There is no specific blood test that indicates Hodgkin disease, but nonspecific changes in blood counts (such as unexplained anemia or low red blood cell counts) are sometimes more common in children with Hodgkin lymphoma.
Biopsy. If the lymph nodes don't feel normal when the doctor examines them and don't respond to antibiotics, the doctor will check tissue from the abnormal lymph node for cancer cells. Hodgkin lymphoma produces a distinctive kind of abnormal cell that is easily identified under the microscope. The only way to make the diagnosis of Hodgkin lymphoma is to look at the tissue from an abnormal lymph node under the microscope. The process of removing the tissue is called a biopsy.
To perform a standard biopsy, a surgeon cuts through the skin and removes an entire lymph node or a piece of a mass of lymph nodes. In children, lymph node biopsies are usually performed with general anesthesia or conscious sedation.
Sometimes, a doctor may first try to obtain tissue from the lymph node by doing a fine needle aspiration biopsy. In this test, a thin needle attached to a syringe is used to remove small amounts of fluid and tissue from the lymph node. This approach may not provide sufficient tissue to diagnose the disease, so it is recommended only when a standard biopsy is determined to be too difficult or dangerous.
After a biopsy confirms the diagnosis of Hodgkin lymphoma, several tests and scans can show how far the disease has spread (a process called staging).
X-ray. An x-ray is a picture of the inside of the body. A chest x-ray will show whether lymph nodes in the mediastinum (chest cavity) are enlarged. Mediastinal masses that take up one-third or more of the chest cavity are considered "bulky." They may cause coughing or breathing problems because of narrowing of the airway.
Computed tomography (CT) scan. A CT scan creates a three-dimensional picture of the inside of the body with an x-ray machine. A computer then combines these images into a detailed, cross-sectional view that shows any abnormalities or tumors. Sometimes, a contrast medium (a special dye) is injected into a vein to provide better detail. The CT scan shows if lymph nodes in the chest or abdomen are enlarged, which may be a sign of cancer. Also, this test will show if the organs, such as the lungs, liver, or spleen are involved.
Positron emission tomography (PET) scans or gallium scans. In a PET scan, radioactive sugar molecules are injected into the body. Cancer cells absorb sugar more quickly than normal cells, so they light up on the PET scan. PET scans are often used to complement information gathered from CT scan, MRI, and physical examination. These tests are used to evaluate how well treatment is working. Before treatment, areas of active Hodgkin lymphoma appear black or "hot" on the scan in most people. During and after treatment, these "hot" areas usually go away as the cancer cells are dying. This test can reassure families and doctors, without doing a biopsy, that scar tissue still present on a CT scan after treatment does not contain active cancer cells. If PET scans are not available, a different type of nuclear medicine test called a gallium scan may be performed instead.
Bone marrow biopsy. Hodgkin lymphoma rarely spreads to the bone marrow in children with localized Hodgkin lymphoma. Nonetheless, a bone marrow biopsy is recommended for most children because the presence of marrow disease would significantly affect the amount of treatment needed. Those with signs of more widespread disease involving lymph glands above and below the diaphragm, and those with other signs of Hodgkin lymphoma that has spread outside of the lymph node system to the lungs, liver, or bones, are more likely to have disease present in the bone marrow.
For this test, the child's skin is numbed with a local anesthetic and a needle is inserted into the bone in the hip until it reaches the spongy part of the bone at the center, the bone marrow. A small amount of marrow is removed and examined under a microscope.
Bone scan. This test shows if Hodgkin lymphoma has spread to the bones. Bone metastases are not common in children with Hodgkin lymphoma, so this test is usually performed only in children who appear to have more advanced or widespread disease at the time of diagnosis. These include children with bone pain or other signs of spread of Hodgkin lymphoma outside of the lymphatic system.
Staging is a way of describing a cancer, such as where it is located, if or where it has spread, and if it is affecting the functions of other organs in the body. Doctors use diagnostic tests to determine the cancer's stage, so staging may not be complete until all the tests are finished. Knowing the stage helps the doctor to decide what kind of treatment is best and can help predict a patient's prognosis (chance of recovery). There are different stage descriptions for different types of cancer.
After the staging tests (described in Diagnosis), the doctor will assign a stage that describes how far the disease has spread. The disease stage is needed to plan treatments. The four stages of Hodgkin lymphoma (I to IV; one to four) are described below.
Each person's disease is also put into one of two categories, "A" or "B," based on whether the person has symptoms of unexplained fever, drenching night sweats, or weight loss. "A" means the patient does not have these symptoms, while "B" means that at least one of these symptoms is present.
Stage I: Cancer occurs in only one area of lymph nodes or in one area or organ outside the lymph nodes.
Stage II: Cancer occurs in two or more lymph node areas on the same side of the diaphragm, or cancer occurs in one lymph node area and one area or organ adjacent to the lymph nodes.
Stage III: Cancer occurs in lymph node areas above and below the diaphragm. The cancer may spread to an area or organ near these lymph nodes and possibly to the spleen.
Stage IV: Cancer has spread outside of the lymph node system to the lungs, liver, bones, bone marrow, or other organs.
Clinical trials are the standard of care for the treatment of children with cancer. In fact, more than 60% of children with cancer are treated as part of a clinical trial. Clinical trials are research studies that compare the standard treatments (best treatments available) with newer treatments that may be more effective. Cancer in children is rare, so it can be hard for doctors to plan treatments unless they know what has been most effective in other children. Investigating new treatments involves careful monitoring using scientific methods and all participants are followed closely to track progress.
To take advantage of these newer treatments, all children with cancer should be treated at a specialized cancer center. Doctors at these centers have extensive experience in treating children with cancer and have access to the latest research. Many times, a team of doctors treats a child with cancer. Pediatric cancer centers often have extra support services for children and their families, such as nutritionists, social workers, and counselors. Special activities for kids with cancer may also be available. An increasing number of pediatric cancer centers also have services for teenagers and young adults. Sometimes, adult cancer centers participate in the same studies for these teens and young adults.
Treatment of Hodgkin lymphoma consists of chemotherapy and/or radiation therapy. There is no role for surgery as a treatment approach, except in some cases of localized lymphocyte predominant Hodgkin disease (LPHD).
The amount and type of treatment used to treat Hodgkin lymphoma depends on how many lymph node areas are involved and how large the nodes have grown. Children with more widespread (advanced) or "bulky" disease may have more rounds of chemotherapy and radiation therapy than children with early stage disease. New studies of childhood Hodgkin lymphoma are trying to further reduce the amount of treatment to avoid long-term side effects.
Chemotherapy
Chemotherapy is the use of drugs to kill cancer cells. Systemic chemotherapy uses drugs to target cancer cells throughout the body.
For children and adolescents, chemotherapy is virtually always used. Classic treatments for Hodgkin lymphoma were a combination of chemotherapy called ABVD (doxorubicin [Adriamycin], bleomycin [Blenoxane], vinblastine [Velban], dacarbazine [DTIC]) or MOPP (mechlorethamine [Mustargen], vincristine [Oncovin], prednisone, procarbazine [Matulane]). These combinations are no longer the standard of care for children because others with less long-term side effects are available. Newer treatments for children use many of these agents, but replace nitrogen mustard with cyclophosphamide [Cytoxan, Neosar] and often replace procarbazine with etoposide [VePesid] to limit the risk of infertility (the inability to have children). More recently, treatments plans for later stage disease have been designed to improve effectiveness by using more dose-density therapies (such as the combinations called ABVE-PC, Stanford V, and BEACOPP), often given for shorter periods of time.
Because chemotherapy attacks rapidly dividing cells, including those in normal tissues such as the hair, lining of the mouth, intestines, and bone marrow, children receiving chemotherapy may lose their hair, develop mouth sores, or have nausea and vomiting. In addition, chemotherapy may lower the body's resistance to infection, lead to increased bruising and bleeding, and cause fatigue. These side effects can be controlled during treatment and usually go away after chemotherapy is completed. The severity of the side effects depends on the type and amount of the drug being given and the length of time the child receives the drug.
The long-term side effects of chemotherapy also depend on the type and total dose of each drug. Higher doses of chemotherapy can affect heart and lung function and cause infertility in the future. Rarely, children with Hodgkin lymphoma develop a second cancer, acute myeloid leukemia, because of chemotherapy's effects on bone marrow function. Fortunately, the risk of long-term side effects is much lower with newer treatment plans that limit the doses of drugs that cause serious health problems. The pediatric clinical trials now in use in most treatment centers use much less amounts of the drug that may affect the heart (doxorubicin) than the dosages used in many treatment plans for adults (particularly for advanced stage disease). The drugs being tested are also unlikely to cause infertility (for instance, procarbazine is no longer used in these clinical trials). Current pediatric clinical trials also evaluate reduced doses of drugs effective for lymphoma but could cause leukemia in the long-term.
Doctors may recommend treatment with chemotherapy alone or a combination of chemotherapy and radiation therapy for children with Hodgkin lymphoma. For later stage disease, current trials often include radiation therapy. For earlier stage disease, many research studies do not include radiation therapy for those who will benefit from chemotherapy.
For children with bulky and advanced disease, many doctors feel that the combination treatment gives the best chance for cure because there are two ways to attack the cancer cells. In combination treatment, doctors reduce the total amount of chemotherapy and radiation therapy, which should reduce health problems after treatment. The most important consideration is to use sufficient therapy to cure the disease with the first treatment plan, because the intensity of therapy for recurrent disease is high.
The medications used to treat cancer are continually being evaluated. Talking with your doctor is often the best way to learn about the medications prescribed for you, their purpose, and their potential side effects or interactions with other medications. Learn more about your prescriptions through Cancer.Net's Drug Information Resources, which provides links to searchable drug databases.
Radiation therapy
Radiation therapy is the use of x-rays or other particles to kill cancer cells. The most common type of radiation treatment is called external-beam radiation therapy, which is radiation therapy given from a machine outside the body. Treatments for Hodgkin lymphoma in the past used high doses of radiation therapy to all of the lymph node areas. Children treated this way had problems with the growth of muscles and bones and had a higher risk of second cancers as they got older.
Today, treatment with radiation therapy alone is rarely used in children. Doctors combine chemotherapy with low-dose radiation treatment given to areas where lymph nodes contain cancer.
Radiation therapy remains a primary treatment for Hodgkin lymphoma. Pediatric approaches use lower dose (20-25 Gy) and reduced volume (involved field or involved node) compared with traditional regimens. The need for radiation therapy is determined by both stage of disease and its response to chemotherapy. Clinical trials are currently in progress to identify the patients that are most likely to benefit from chemotherapy so they may not need radiation therapy.
Full-dose radiation (30-45 Gy) therapy, necessary to cure Hodgkin disease if chemotherapy is not used, has been associated with significant potential for hypoplasia (limited growth of bone and muscle) in growing children and second cancers (especially breast cancer) as well as thyroid, heart, reproductive, and lung problems.
Short-term side effects from radiation therapy include tiredness, sore throat, dry mouth, mild skin reactions, upset stomach, and loose bowel movements.
Long-term side effects of radiation therapy may include growth problems of bones and soft tissues; thyroid, heart, and lung problems; and second cancers. The risk of long-term side effects is much lower with newer radiation therapy techniques that deliver low doses only to cancerous lymph nodes while protecting normal tissues. While the risk of breast cancer increases after high-dose radiation therapy in girls treated around the time of puberty, the risk of lower doses is less clear. Since early atherosclerotic heart disease, another significant, long-term risk of radiation therapy, affects boys as well, the current approach is to limit radiation therapy for both boys and girls, if possible. However, radiation therapy is a very effective treatment for Hodgkin lymphoma and plays a major role in achieving a cure.
Recurrent Hodgkin lymphoma
Recurrent Hodgkin lymphoma is disease that comes back after treatment. The disease can come back in the same area it began or in a new area of the body. Treatment for recurrent Hodgkin lymphoma depends on where the disease recurs, the type of treatment the child has had previously, and the time since the first treatment was completed. For example, if radiation therapy was the original treatment, then chemotherapy may be used as a second treatment. If chemotherapy was given initially, then the child may be given another round of chemotherapy using different drugs. Ifosfamide (Ifex) and vinorelbine (Navelbine) have recently been shown to be an effective treatment for recurrent disease in children and adolescents, and are now the standard drugs recommended prior to stem cell transplantation/bone marrow transplantation (see below) in the Children's Oncology Group studies. The combination of gemcitabine (Gemzar) with vinorelbine also has recently been shown to be quite effective in children and adolescents.
If the disease has come back very soon after the first treatment or after the use of both chemotherapy and radiation therapy, more aggressive therapy including a stem cell transplantation may be recommended to increase the chances of keeping the disease in remission (the disappearance of the signs and symptoms of the disease).
Stem cell transplantation/bone marrow transplant
Often when high doses of chemotherapy or radiation therapy are used to treat recurrent Hodgkin lymphoma, the bone marrow becomes damaged and can't produce healthy blood cells. To replace those lost cells, a hematopoietic stem cell transplant (SCT) may be recommended.
A stem cell transplant is a medical procedure in which diseased bone marrow is replaced by highly specialized cells, called hematopoietic stem cells. Hematopoietic stem cells are found both in the bloodstream and in the bone marrow. Today, this procedure is more commonly called a stem cell transplant, rather than bone marrow transplant, because blood stem cells are typically what is being transplanted, not the actual bone marrow tissue.
There are two types of stem cell transplantation depending on the source of the blood stem cells: allogeneic (ALLO) and autologous (AUTO).
In an ALLO transplant, stem cells are obtained from a donor whose tissue matches the patient's on a genetic level, called HLA-typing. Most often, a patient's brother or sister serves as the donor, although unrelated donors can serve as the donor too. Millions of people worldwide have volunteered to donate stem cells for patients who do not have matched family members; matches can be made by searching a computer registry. In addition, a donation of stem cells derived from umbilical cord blood is sometimes considered if family donors are not available.
In an AUTO transplant, the patient's own stem cells are used. The stem cells are obtained from the patient when he or she is in remission from previous treatment. The stem cells are then frozen until the high-dose treatment for the transplant is completed.
The goal of transplantation is to destroy cancer cells in the marrow, blood, and other parts of the body and have replacement blood stem cells create healthy bone marrow. In most stem cell transplants, the patient is treated with high doses of chemotherapy and/or radiation therapy to destroy as many cancer cells as possible. This also destroys the patient's bone marrow tissue and suppresses the patient's immune system so that, in an ALLO transplant, the donor cells are not rejected by the body. After the high-dose treatment is given, blood stem cells are infused into the patient's vein to replace the bone marrow and restore normal blood counts from donor cells. Sometimes, ALLO transplants can also be performed after giving lower doses of chemotherapy and/or radiation therapy that are still sufficient to suppress the immune system and allow growth of the donor cells. These transplants, sometimes termed "minitransplants" or "reduced intensity transplants" have less immediate side effects, allowing the procedure to be used for more older patients.
For both ALLO and AUTO transplant types, the replacement cells engraft (begin to make new blood cells) and turn into healthy, blood-producing tissue in two to three weeks. Because there are considerable risks with transplantation, the doctor will consider several factors, including the patient's age and general health, before recommending this approach. Destroying the patient's own marrow reduces the body's natural defenses, temporarily leaving the patient at an increased risk of infection. Until the patient's immune system is back to normal, patients may need antibiotics and blood transfusions.
In an ALLO transplant, another major risk is that the donor's cells will recognize the patient's body as foreign, causing graft-versus-host disease (GVHD). GVHD is a serious complication of allogeneic transplants and can be fatal. Other side effects may include liver problems, diarrhea, infections, and rashes. At the same time, the donor cells can also recognize the cancer cells as foreign and destroy these cells, a mechanism that is one of the major reasons why ALLO transplantation generally works well over the long term.
However, ALLO transplants have not been used as frequently in patients with recurrent Hodgkin lymphoma because of the greater risks of serious side effects. A study in the Children's Oncology Group is trying to achieve the benefits of ALLO transplantation without the risks by using drugs (cyclosporine [Neoral], interferon gamma [Actimmune], and interleukin-2 [Proleukin]) that may cause the immune system to attack the tumor cells.
In an AUTO transplant, there is little risk of GVHD because the replacement stem cells are the patient's own cells. However, there is a risk in an autologous transplant that some of the cells that are put back into the patient could still be cancerous.
Doctors and scientists are always looking for better ways to treat children with Hodgkin lymphoma. A clinical trial is a way to test a new treatment to prove that it is safe, effective, and possibly better than a standard treatment. Patients who participate in clinical trials are among the first to receive new treatments before they are widely available. However, there is no guarantee that the new treatment will be safe, effective, or better than a standard treatment.
Patients decide to participate in clinical trials for many reasons. For some patients, a clinical trial is the best treatment option available. Because standard treatments are not perfect, patients are often willing to face the added uncertainty of a clinical trial in the hope of a better result. Other patients volunteer for clinical trials because they know that finding new drugs and other therapies is the only way to make progress in treating Hodgkin lymphoma. Even if they do not benefit directly from the clinical trial, their participation may benefit future children with Hodgkin lymphoma.
To join a clinical trial, patients must complete a learning process known as informed consent. During informed consent, the doctor should list all of the patient's options, so the person understands how the new treatment differs from the standard treatment. The doctor must also list all of the risks of the new treatment, which may or may not be different from the risks of standard treatment. Finally, the doctor must explain what will be required of each patient in order to participate in the clinical trial, including the number of doctor visits, tests, and the schedule of treatment. Learn more about clinical trials, including patient safety, phases of a clinical trial, deciding to participate in a clinical trial, questions to ask the research team, and links to find cancer clinical trials.
Cancer and its treatment can cause a variety of side effects. However, doctors have made major strides in recent years in reducing pain, nausea and vomiting, and other physical side effects of cancer treatments. Many treatments used today are less intensive but as effective as treatments used in the past. Doctors also have many ways to provide relief to patients when such side effects do occur.
Fear of treatment side effects is common after a diagnosis of cancer, but it may be helpful to know that preventing and controlling side effects is a major focus of your health-care team. Before treatment begins, talk with your doctor about possible side effects of the specific treatments you will be receiving. The specific side effects that can occur depend on a variety of factors, including the type of cancer, its location, the individual treatment plan (including the length and dosage of treatment), and the person's overall health.
Ask your doctor which side effects are most likely to happen (and which are not), when side effects are likely to occur, and how they will be addressed by the health-care team if they do happen. Also, be sure to communicate with your doctor about side effects you experience during and after treatment. For more information on the most common side effects of cancer and different treatments, along with ways to prevent or control them, visit Cancer.Net's section on Managing Side Effects, based on ASCO's curriculum.
In addition to physical side effects, there may be psychosocial (emotional and social) effects as well. Learn more about the importance of addressing these needs in Cancer.Net's section on Caring for the Whole Patient.
For more information on late effects or long-term side effects, please read the After Treatment section or talk with your doctor.
After treatment for Hodgkin lymphoma ends, talk with your child's doctor about developing a follow-up care plan. This plan may include regular physical examinations and/or medical tests to monitor your child's recovery for the coming months and years. All children treated for cancer, including Hodgkin lymphoma, should have life-long, follow-up care.
People with Hodgkin lymphoma are most often adolescents or young adults. While the treatment period is limited (usually less than months) and the outcome is excellent (overall survival is greater than 85%), there are several potential long-term consequences as a result of therapy. These include cardiac (after doxorubicin or radiation therapy), pulmonary (bleomycin, radiation therapy), thyroid (radiation therapy), secondary cancer (radiation therapy or chemotherapy), and reproductive effects (procarbazine, nitrogen mustard, pelvic radiation). Those who had a splenectomy (surgical removal of the spleen) have an ongoing risk of serious infection.
Based on the type of treatment the child received, the doctor will determine what examinations and tests are needed to check for long-term side effects and the possibility of secondary cancers. Your child's doctor can recommend the necessary screening tests. Follow-up care should also address the child's quality of life, including any developmental or emotional concerns. Learn more about Childhood Cancer Survivorship.
The child's family is encouraged to organize and keep a record of the child's medical information, so that as the child enters adulthood, he or she has a clear, written history of the diagnosis and details of the treatment given. The doctor's office can help you compile this, and it should include recommendations from the doctor about the schedule for follow-up care. This information will be valuable to doctors who care for your child during his or her lifetime.
Children who have had cancer can also enhance the quality of their future by following established guidelines for good health into and through adulthood, including not smoking, maintaining a healthy weight, eating a balanced diet, and participating in regular physical activity. Talk with the doctor about developing a plan that is best for your child's needs.
In most Hodgkin lymphoma survivors, the medical consequences do not significantly limit life span. However, Hodgkin lymphoma survivors report significant concerns regarding their health status compared with other survivors of childhood cancer. This may result from the psychosocial effects of treatment during adolescence, when the adolescent may feel "different" from healthy peers. In addition, many Hodgkin lymphoma survivors experience long-term fatigue that may require lifestyle changes, such as taking a reduced course load at college or choosing employment that is consistent with the individual's stamina. Sterility or infertility may also affect the young adult who is hoping to some day start a family. Newer reproductive technologies may help some of these individuals. Current treatment plans attempt to reduce exposure to alkylating agents to limit such risks.
Ongoing follow-up care by health-care professionals experienced in long-term consequences is important. Efforts at preventive health care include breast cancer screening (after mediastinal radiation therapy), smoking cessation (after bleomycin or radiation therapy due to enhanced lung cancer risk) and reduction of risk for atherosclerotic heart disease through exercise, diet, and medication. Such preventative measures may foster better, long-term outcomes and offers the person a degree of control of his or her own health status.
Research involving more advanced diagnostic procedures and treatments for Hodgkin lymphoma is ongoing. The following advancements may still be under investigation in clinical trials and may not be approved or available at this current time. Always discuss all diagnostic and treatment options with your doctor.
New Drugs. To reduce side effects and improve efficacy, identification of novel agents is critical. The COG has an ongoing study evaluating bortezomib in combination with gemcitabine and vinorelbine. Bortezomib is thought to prevent the movement of NFkB to the cell nucleus where it interferes with cell death pathways. NFkB is consitutively expressed in Hodgkin lymphoma. The theory is that inhibition of NFkB will allow chemotherapy (in this study, gemcitabine and vinorelbine) to induce tumor cell death.
Allogeneic SCT. Children are first given chemotherapy to suppress their immune systems and eliminate their own bone marrow (stem) cells. New stem cells from a donor (usually a close relative) are transferred to the child. The new cells from the donor's immune system see the tumor cells as "foreign" and destroy them. Other novel agents are attempting to induce GVHD after autologous transplantation, as a potentially less toxic approach.
The major goal of Hodgkin lymphoma research is to improve treatment effectiveness while reducing long-term toxicity. Early response of the disease to a specific treatment is being studied as a method to tailor therapy to the individual. Shorter, more intensive regimens may improve effectiveness. It is critical that researchers learn which patients need radiation therapy to ensure cure, and who may be cured without the long-term consequences of radiation exposure.
Is my child/adolescent being treated on a regimen designed for this age group rather than for adults?
Pediatric treatment regimens are designed specifically to minimize the long-term side effects of treatment. Specifically, current pediatric regimens in the COG do not use doxorubicin for more than four cycles (4 months) or radiation therapy that exceeds 21 Gy unless the disease has recurred. In most instances, less is used. Adolescents and children should have care directed by a pediatric oncologist to ensure that the treatment given will reduce the potential for long-term effects of therapy as much as possible.
What are the immediate and long-term side effects of the treatment planned? Are there other regimens that might be as effective with different risks?
Unfortunately, all regimens have potential side effects. For some patients or families, one set of risks is less tolerable than others. Many new clinical trials give the drugs at a faster rate, since this may be more effective. There could be more side effects early on, but the child may need less therapy in total, thus reducing long-term effects. Be sure to talk with your child's doctor to understand the balance between early side effects and long-term effects. For example, high-dose radiation therapy (without chemotherapy) is often easier and faster than chemotherapy, but the side effects for young people are significant. This approach is not recommended for most children or adolescents.
Under what circumstances should sperm banking be considered?
Boys who will receive alkylating agents should try to bank sperm before treatment begins, since these drugs can cause sterility (alkylating agents most commonly used in Hodgkin lymphoma are cyclophosphamide, nitrogen mustard, procarbazine, and ifosfamide). Your doctor can advise you whether the planned dose is likely to cause significant risk. For boys who are too young to bank sperm, the importance of using a regimen that does not include procarbazine or nitrogen mustard is increased.
If an adolescent girl receives pelvic radiation therapy, can fertility be preserved?
The ovaries can be moved out of the radiation field to try to preserve fertility.
What is recommended for long-term care of my child?
At the end of treatment, it is useful to discuss which screening tests should be performed in the months, years, and decades that will follow. As the child matures, this information should be passed to them, so they will understand any health risks. The details about the drugs and radiation treatment given should be written down with a recommendation for follow-up care.
American Society for Blood and Marrow Transplantation
85 W Algonquin Rd., Ste. 550
Arlington Heights, IL 60005
Phone: 847-427-0224 www.asbmt.org
Blood and Marrow Transplant Information Network
2310 Skokie Valley Rd., Ste. 104
Highland Park, IL 60035
Phone: 847-433-3313
Toll Free: 888-597-7674 www.bmtnews.org
Candlelighters Childhood Cancer Foundation
3910 Warner St.
Kensington, MD 20895
Toll Free: 800-366-2223
Phone: 301-962-3520 www.candlelighters.org
Children's Hospice International
901 N. Pitt St., Ste. 230
Alexandria, VA 22314
Toll Free: 800-24-CHILD (800-242-4453)
Phone: 703-684-0330 www.chionline.org
The Leukemia and Lymphoma Society
1311 Mamaroneck Ave., Ste. 130
White Plains, NY 10605
Toll Free: 800-955-4572 www.lls.org
Make-A-Wish Foundation 3550 N Central Ave., Ste. 300
Phoenix, AZ 85012
Toll Free: 800-722-9474 www.wish.org
National Bone Marrow Transplant Link
20411 West 12 Mile Rd., Ste. 108
Southfield, MI 48076
Phone: 248-358-1886
Toll Free: 800-LINK-BMT (800-546-5268) www.nbmtlink.org
National Childhood Cancer Foundation
440 E Huntington Dr.
P.O. Box 60012
Arcadia, CA 91006-6012
Phone: 800-458-NCCF www.nccf.org
National Children's Cancer Society 1015 Locust, Ste. 600
St. Louis, MO 63101
Toll Free: 800-532-6459
Phone: 314-241-1600 www.nationalchildrenscancersociety.org
National Marrow Donor Program
3001 Broadway St., NE, Ste. 500
Minneapolis, MN 55413-1753
Phone: 800-MARROW2 (800-627-7692)
Pat. Adv.: 888-999-6743 www.marrow.org
The Children's Cause for Cancer Advocacy
1010 Wayne Ave., Ste. 770
Silver Spring, MD 20910
Phone: 301-562-2765 www.childrenscause.org
The Starlight Starbright Children's Foundation
5757 Wilshire Blvd., Ste. M100
Los Angeles, CA 90036
Toll Free: 800-315-2580
Phone: 310-479-1212 www.slsb.org
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