Thanks to advances in early detection and better treatment regimens, survivors of childhood cancers often go on to live full and productive lives. However, the same treatments that cure cancer can also put survivors at risk for future medical problems. Such health problems, known as “late effects“, can occur months or years or even decades after successful treatment has ended.
FACT: In a large study of adult survivors of childhood cancer, researchers have found that more than 95% suffered from a chronic health condition by the age of 45, including pulmonary, hearing, cardiac and other problems related either to their cancer or the cancer treatment.
FACT: The chances of having late effects increases over time so the older you get, the more likely you are to experience health problems. Risk factors vary depending type of cancer originally treated, location & size of tumor(s), treatment regimens utilized as well as other patient-related factors.
FACT: Survivors need proactive, clinical health screenings and ongoing, specialized follow up care. Regular follow-up by health professionals who are experts in finding and treating late effects is key. The exams should be done by a health professional who is both familiar with the survivor’s risk for late effects and can recognize the early signs of late effects.
If you are an adult survivor of pediatric cancer, take a look at these RESOURCES that focus on late effects of cancer treatments:
* Survivors Taking Action & Responsibility (STAR) program at the Lurie Comprehensive Cancer Center of Northwestern University is a comprehensive long-term follow-up program specifically created for adult survivors of pediatric cancer. STAR is one of several programs in the country to offer this specialized service. Here, annual check ups are tailored to each patient and may include a heart ultrasound, a battery of blood tests, a mammogram, a chest MRI, a session with a counselor as well as many other diagnostic tools.
I also LOVE their GET EMPOWERED: A video education series for childhood cancer patients and survivors. Topics include the impact of childhood cancer on adult survivors, making the transition to adult health care, cardiac risk factors, fertility, finding a “new normal” and navigating the emotional side of survivorship.
* Another great source of information is The Children’s Oncology Group’s Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers. Talk to your doctor(s) about these guidelines.
* Beyond The Cure has a very informative website that provides detailed information about the late effects of a cancer diagnosis and treatment involving all aspects of survivors’ lives. To help analyze late effects specific to your diagnosis and treatment, check out their Late Effects Assessment Tool.
* My Heart Your Hands was created by 2 adult survivors of pediatric cancer. Their mission is to not only raise awareness of the potential late effects of cancer treatments, but to also equip survivors with information and tools they need to manage their follow up care. Check out their listing of Late Effects Clinics located throughout the US or listen to founder Stephanie Zimmerman’s story.
Remember, the more you know about the possible long-term effects, the better prepared you will be to meet any challenges the future may bring.
If you know of other survivorship resources that focus on late effects of cancer treatment, please post them below. Knowledge is power. Let’s share the power!