Thanks to major medical advances in the past decade, about 80 percent of kids who had cancer during childhood survive. And with this encouraging news comes a question that most parents never considered during those intense weeks and months of treatment: What are the long-term effects of the disease and/or the therapies? Dr. Laura Hogan, an expert on pediatric cancer survivorship, talks about what they are and how to address them.
Do all children who survived cancer experience long-term issues or after effects?
Not all, but at least two thirds of children will have some type of medical, psychological or social complication. One third of these complications will be severe or life-threatening, including secondary cancers. Common complications include heart, lung and/or kidney disease, as well as psychosocial issues such as anxiety and depression. Childhood cancer survivors frequently have problems in school. Now that more kids are surviving childhood cancers, it is imperative that we understand the enormous impact the disease has on every part of their lives.
How do we know what to look for?
The best approach is to work with a physician or medical team knowledgeable about the long-term risks and potential complications associated with cancer treatment. They should be able to monitor patients over the long term, understanding what to look for and what to test for as the patient grows into adulthood. This is most frequently provided by a pediatric oncology specialist who is up to date on the latest guidelines, research and protocols — all of which are rapidly changing as we learn more about survivorship. Note, however, working with a specialist should be in addition to, not in place of a primary care physician.
Where can I find this specialized expertise in Suffolk County?
The only Pediatric Oncology survivorship program in Suffolk County is at Stony Brook Children’s Hospital. Our program works closely with Stony Brook Cancer Center and is open to all children who have had pediatric cancers — whether or not they received their original treatment here. Our team takes a comprehensive approach so we can monitor, prevent and/or treat over time the physical, emotional and psychosocial effects post-cancer. The team includes a pediatric oncologist, a nurse practitioner, a social worker, a nutritionist, a psychologist, a child life specialist and a member of our School Intervention and Re-entry Program.
How does the survivorship program work?
When patients come to us — typically after two years of being cancer free — we review their treatment summary, identify what complications they may be at risk for, and put a plan together so we can identify and treat complications. Early identification and treatment may lead to a better quality of life. Once they are in the program, patients see us for annual evaluations. Patients see all of our team members on one visit, which makes this comprehensive level of care both accessible and convenient. We follow national standard of care guidelines established by the Children’s Oncology Group, the nation’s premier pediatric cancer organization. Our goal is to empower and educate patients — now and in the long term. This allows them to remain on top of their health, take appropriate action when necessary and improve their quality of life. Surviving cancer is a powerful achievement. We want to ensure that patients stay on course and can live healthy, productive lives moving forward.
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