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After Treatment – Living as a Childhood Hodgkin Lymphoma Cancer Survivor

After Treatment: Living as a Childhood Hodgkin Lymphoma Survivor

IMG_2186The 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:

Learn More About the Different Types of Childhood Cancers:

About American Childhood Cancer Organization

American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, ACCO is the sole U.S. member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer.  And most importantly, ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.

For additional information about childhood cancer or on ACCO, or to order resources for you or your child, please visit our website at www.acco.org.

For more information about the American Childhood Cancer Organization and how we can help, call 855.858.2226 or visit:

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