After Treatment: Living as a Childhood Hodgkin Lymphoma Survivor
The good news is that for most patients, the long-term prognosis for childhood Hodgkin lymphoma is excellent. For patients who have been through months or even years of difficult chemotherapy and radiation therapy, it is easy to see the final treatment—the declaration of “cancer free” or even “cured”—as the final destination of a long journey. Survivorship, however, is in fact its own journey, and one that can also be extremely challenging, both physically and emotionally.
For many survivors of childhood Hodgkin lymphoma, the emotional impact of survivorship—especially in the short term—can be two-fold. First, reintegrating back into a “normal” life is not always as easy as it sounds. For adolescents and young adults who have been forced away from school and social activities, managing the pressures of returning to academics and reestablishing friendships can be exceedingly and surprisingly stressful. Second, both survivors and their families must cope with the fear that the cancer will return (recurrence). This anxiety is extremely common among cancer survivors, and can be especially difficult to cope with during routine follow-up scans and exams.
Survivorship also comes with a lengthy list of potential long-term physical side effects, also known as “late effects”, which may result from the chemotherapy and radiation required to treat Hodgkin lymphoma. While treatment mechanisms are improving significantly, with more targeted treatments and smaller and more effective dosages, the risk of serious and long-term side effects has not yet been eliminated. It is critical that survivors follow a long-term follow-up program, potentially for the rest of the child’s adult life.
Some of the more common late effects include:
- Second cancers: Hodgkin lymphoma survivors are a higher risk for developing a second type of cancer later in the life, usually relating to the chemotherapy or radiation needed to treatment the original cancer. Chemotherapy has been linked to the development of blood cancers such as leukemia, while radiation therapy has been linked to cancers in the organs adjacent to the treated area. For instance, young women who undergo chest radiation are more likely to develop breast cancer; chest radiation has also been linked to a higher risk of lung cancer. While second cancers cannot be prevented, it is important to maintain a healthy lifestyle, avoid known cancer-triggers such as tobacco use, and follow an aggressive early-screening schedule as appropriate.
- Fertility problems: Cancer treatments in adolescents and young adults can cause long-term problems relating to fertility. For men, chemotherapy can temporarily or even permanently impact sperm production, while for women the late effects can be even more complex, affecting both the menstrual cycle and/or the reproductive organs. Luckily, steps can be taken in advance of treatment—such as banking sperm or surgically moving ovaries—to reduce the long-term impact on reproductive capabilities.
- Increased risk of infection: Although the mechanisms are not yet well-understood, Hodgkin lymphoma survivors may have a compromised immune system, leaving them more vulnerable to bacterial and/or viral infections. This is especially problematic for individuals who have had their spleen removed (significantly less common now than in the past). Thus, it is especially important for survivors to get regular flu shots and other standard vaccines, and in some cases even get vaccines for certain bacteria.
- Organ problems: Depending on the intensity of chemotherapy and the intensity and location of radiation, survivors can develop health problems in adjacent organs that may have been adversely impacted by treatment. The most common concerns are usually thyroid problems (hypothyroidism), heart disease, stroke, and lung damage.
Obviously, the goal of any treatment program is to maximize the chances of recovery while minimizing the risk for short- and long-term side effects. Despite rapid improvements in available cancer treatments, we have not yet found a way to fully eliminate these risks. Yet there are several steps survivors and their families can take to monitor for and identify late effects as early as possible, thereby increasing the likelihood that they can be successfully treated.
- Develop a survivorship plan that includes a regular schedule of follow-up visits and early screening tests, a list of potential late effects, and a wellness plan.
- Stick to all scheduled tests, exams, and screenings, even if they cause anxiety about recurrence.
- Alert your physician to any health problems or concerns immediately, even if they seem insignificant. Unfortunately, many late effects cannot be diagnosed until symptoms become apparent.
- Maintain accurate and up-to-date health records. As you see new physicians throughout your life, it is important that they have access to your medical history and all cancer treatments.
- Maintain health insurance. Especially for young adults, the temptation to save money and go without can be overwhelming. Yet late effects can crop up suddenly and treatment can be expensive without insurance.
More about Childhood Hodgkin Lymphoma Cancers:
- About Childhood Hodgkin Lymphoma Cancer – Detection and Diagnosis
- Causes, Risk Factors, and Prevention of Childhood Hodgkin Lymphoma Cancer
- What are the signs and symptoms of Childhood Hodgkin Lymphoma Cancer?
- Childhood Hodgkin Lymphoma Cancer Treatment
- Childhood Hodgkin Lymphoma Cancer – Stages and Prognosis
- What is the expected life span of Childhood Hodgkin Lymphoma Cancer?
- After Treatment – Living as a Childhood Hodgkin Lymphoma Cancer Survivor
Learn More About the Different Types of Childhood Cancers:
- Childhood Brain Tumor Cancer (Brain Stem Tumors)
- Spinal Cord Tumor Cancer
- Childhood Neuroblastoma Cancers
- Childhood Hodgkin Lymphoma Cancers
- Non-Hodgkin Lymphoma Cancers
- Wilms tumor (Kidney Tumors)
- Rhabdomyosarcoma
- Retinoblastoma
- Bone cancer (including osteosarcoma and Ewing sarcoma)
- Leukemia Cancers: Acute lymphocytic (lymphoblastic) leukemia (ALL) Acute myelogenous leukemia (AML); Juvenile myelomonocytic leukemia (JMML)
- Hepatoblastoma (Liver Cancer)
- Rhabdoid Tumors
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About American Childhood Cancer Organization
The American Childhood Cancer Organization was founded in 1970 by parents of children and adolescents diagnosed with cancer. As the nation’s oldest and largest grassroots organization dedicated to childhood cancer, ACCO is committed to shaping policy, supporting research, raising awareness, and providing free educational resources to kids with cancer, survivors, and their families. Additionally, ACCO is the sole U.S. member of Childhood Cancer International (CCI) and has helped support more than half a million families over the past 50 years. Help make childhood cancer a national health priority because kids can’t fight cancer alone®.
For more information about how ACCO can help your family, call 855.858.2226 or visit:
Hodgkin lymphoma is a specific type of cancer that starts within white blood cells called lymphocytes found in the lymph (or lymphatic) system. Hodgkin lymphoma (HL) can be diagnosed in individuals of all ages, but is most prevalent in adolescents between the ages of 15-19 and again in adults older than 55. It is rare in children under the age of five. When classified as a type of childhood cancer, HL accounts for about 6% of all childhood cancers; however, most statistics relating to HL do not distinguish between diagnoses in children, adolescents, and adults.
When a child is diagnosed with most types of childhood cancer, including neuroblastoma, a critical part of the diagnosis is the “stage” of the disease. The stage of the disease indicates how far the disease has spread or progressed from the site of the original tumor. In the case of neuroblastoma, there are currently two methodologies in use to determine staging.
Neuroblastoma is a form of childhood cancer that begins in the early development of nerve cells. Because this rare form of cancer usually begins when the sympathetic nervous system is developing in an embryo or fetus, it occurs most often in infants and very young children, and is extremely rare in children over the age of 10. And because it begins when nerve cells are developing very quickly, the cancer’s development within each child can vary widely: some neuroblastomas grow and spread very quickly while other neuroblastomas grow very slowly. In some cases, the cancerous cells simply disappear on their own, while in other cases, the cancerous cells mature into normal nerve cells. Therefore, treatment for neuroblastoma often depends, upon other factors, on the stage and risk grouping of the cancer, as well as on the age of the child.
The central nervous system (CNS) is composed of the brain and the spinal cord, a delicate and sensitive column of nerves protected by the boney vertebrae of the spine. Statistically, CNS cancers are all grouped together as “brain and spinal cord tumors”, but of course in reality, there are a number of different and distinct types of spinal cord tumors, and each specific tumor requires a unique treatment approach and carries its own outlook for long-term survivorship.
surgery. After reading the scans, doctors determined that her intestines and stomach were severely damaged but no holes were present saying that she 
When classifying childhood cancers and discussing important statistics, tumors of the brain and tumors of the spinal cord are often lumped together as one broad grouping (although, of course, when diagnosing childhood cancer, each tumor is specified as a more specific “type”). And in general, treatment options for both spinal cord tumors and brain tumors are the same, usually consisting of some combination of
Meet Emma…
In the span of ten minutes, Emma’s life changed forever. Megan said that the doctor said, “we see a mass, she is being flown to Oklahoma City.” It took a few minutes before I could catch my breath. I held Emma’s hand and I told her straight up. “Emma, the doctors say they see a tumor and we have to fly to Oklahoma City for another doctor to look at you.” Emma said, “Momma, I will be your angel, and when it is time for you to come, I will come get you.” Heartbreaking.
an MRI was performed two days later. The next day, the tumor was removed during her craniotomy. After a preliminary diagnosis of medulloblastoma that was believed to be cancerous, it was confirmed two days later. Treatment has consisted of a port placement, 30 proton therapy treatments, lumbar puncture, chemotherapy, MRI’s of the spine and head under general anesthesia, bone targeted therapies (BTT), bilateral tubes, and multiple hospitalizations. Since Emma’s tumor is so rare, she is currently in a trial where she gets 25% less chemo and proton therapy doses. She’s the only one participating in this study because of the rarity of the tumor. Her results will help to change the way cancer is treated.
As a result of her diagnosis, Emma suffers from anxiety and depression, decreased fine motor skills and complete left sided deafness. However, Megan says, “She has finally embraced beauty and that it comes in lots of different ways. She is funny and spirited – and yet will lay in my lap and cry often at night.” Emma can be described as ornery, witty and a quick thinker – and her mom wouldn’t have it any other way.
and Amazon + ACCO’s 2018 Ambassador Grace Eline was in the Gallery for the State of the Union speech as an Honored Guest of the President and First Lady.
Beginning in early 2019, our team at ACCO has had several positive and productive meetings with the top leadership at the Department of Health and Human Services (HHS), including HHS Secretary Alex Azar and HHS Assistant Secretary for Health Dr. Brett Giroir. These discussions were unique opportunities to provide decision makers with critical data gathered from our work across the country and around the world. We are grateful to the Administration for giving us a seat at the table and look forward to continuing to share insights and work together.
ACCO’s team attended Action Days in Washington alongside over 200 other childhood cancer advocates from across the country. In hundreds of meetings on Capitol Hill, Action Day advocates thanked Congress and the Trump Administration for making childhood cancer a national priority and urged them to keep up their important work to ensure full funding for efforts across the board to improve treatments and find cures. Specifically, we called on Members of Congress to fully fund: the National Institutes of Health (NIH) and NCI; the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act, which was passed into law last Summer; and the President’s Childhood Cancer Initiative.