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Care for children and teens diagnosed with Hodgkin lymphoma does not end when active treatment has finished. Your child’s health care team will continue to check that the cancer has not come back, manage any side effects, and monitor your child’s overall health. This is called follow-up care. All children treated for cancer, including Hodgkin lymphoma, should have life-long, follow-up care.
Your child’s follow-up care may include regular physical examinations, medical tests, or both. Doctors want to keep track of your child’s recovery in the months and years ahead.
Cancer rehabilitation may be recommended, and this could mean any of a wide range of services such as physical therapy, family or individual counseling, nutritional planning, and/or educational assistance. The goal of rehabilitation is to help survivors and their families regain control over many aspects of their lives and remain as independent as possible. Learn more about cancer rehabilitation.
Learn more about the importance of follow-up care.
Watching for recurrence
One goal of follow-up care is to check for a recurrence, which means that the cancer has come back. Cancer recurs because small areas of cancer cells may remain undetected in the body. Over time, these cells may increase in number until they show up on test results or cause signs or symptoms.
During follow-up care, a doctor familiar with your child’s medical history can give you personalized information about the risk of recurrence. Your child's doctor will ask specific questions about your child’s health. Some children may have blood tests or imaging tests as part of regular follow-up care, but testing recommendations depend on several factors including the type, stage, and risk group of lymphoma first diagnosed and the types of treatment given.
The anticipation before having a follow-up test or waiting for test results may add stress to you or a family member. This is sometimes called “scanxiety.” Learn more about how to cope with this type of stress.
Managing long-term and late side effects of childhood cancer
Sometimes side effects may linger beyond the active treatment period. These are called long-term side effects. In addition, other side effects called late effects may develop months or even years after treatment has ended. Late effects can occur almost anywhere in the body. They include physical problems, such as heart and lung problems, fertility problems, and second cancers, which is a new cancer that happens in someone who has had cancer before. They also include emotional problems, such as anxiety and depression, and problems with memory, thinking, attention, and learning. The risk of specific late effects is directly related to the specific chemotherapy drugs in the treatment plan and areas treated by radiation therapy and surgery.
Based on the type of treatment your child received, the doctor will recommend what examinations and tests are needed to check for late effects. The long-term side effects of chemotherapy also depend on the type and total dose of each drug. These include:
Heart problems after doxorubicin or radiation therapy
Lung problems after bleomycin or radiation therapy
Thyroid problems after radiation therapy
Secondary cancer after radiation therapy or chemotherapy
Fertility problems after cyclophosphamide, mechlorethamine, procarbazine, or pelvic radiation
In addition, children who had their spleen removed (splenectomy) have an ongoing chance of serious infection. Splenectomy is no longer routinely performed for Hodgkin lymphoma, but it may affect survivors of Hodgkin lymphoma who were treated many years ago. Rarely, children with Hodgkin lymphoma develop a specific second cancer, called 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 and radiation therapy that cause serious health problems.
For most Hodgkin lymphoma survivors, the medical side effects of treatment do not significantly affect how long someone lives. However, Hodgkin lymphoma survivors report significant concerns regarding their health compared with other survivors of childhood cancer. This may result from the social and emotional effects of treatment during adolescence, when the teen may feel different from their peers and/or experience social isolation. In addition, some 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 their energy level. Learn more about late effects for childhood and young adult cancer survivors.
Follow-up care should address your child’s quality of life, including any developmental or emotional concerns.
Ongoing follow-up care by health care professionals experienced in long-term side effects is important. Important preventive health care measures for survivors of childhood Hodgkin lymphoma include regular breast cancer screening in patients who received mediastinal radiation therapy; not smoking due to enhanced lung cancer risk, especially after receiving bleomycin or radiation therapy; and reducing the risk for heart disease through exercise, diet, and medication. Such preventive steps may foster better, long-term health outcomes and may offer people a sense of control over their own health.
The Children's Oncology Group (COG) has studied the physical and psychological effects that childhood cancer survivors face. Based on these studies, COG has created recommendations for long-term follow-up care for childhood, adolescent, and young adult cancer survivors that can be found on a separate website: www.survivorshipguidelines.org.
Keeping a child’s personal health record
You are encouraged to organize and keep a personal record of your child’s medical information. The doctor should help you create this. That way, as the child enters adulthood, they have a clear, written history of the diagnosis, the treatments, and the doctor’s recommendations about the schedule for follow-up care. These documents are often referred to as cancer treatment summaries and/or survivorship care plans. ASCO offers forms to help keep track of the cancer treatment your child received and develop a survivorship care plan when treatment is completed.
Some children continue to see their oncologist, while others transition back to the care of their pediatrician, primary care doctor, or another health care professional. This decision depends on several factors, including the type and stage of cancer, side effects, health insurance rules, and your family’s personal preferences. Talk with the health care team about your child’s ongoing medical care and any concerns you have about their future health.
If a doctor who was not directly involved in your child’s cancer care will lead the follow-up care, be sure to share the cancer treatment summary and survivorship care plan forms with them and with all future health care providers. Details about the specific cancer treatment given are very valuable to the health care professionals who will care for your child throughout their lifetime.
The next section in this guide is Survivorship. It describes how to cope with challenges in everyday life after a cancer diagnosis. Use the menu to choose a different section to read in this guide.