In 1999, when she was only 15 years old, Jillian Burns, BSN, now an oncology nurse at Pennsylvania Hospital, was diagnosed with osteosarcoma. At a time when most teens are thinking about high school activities and hanging out with friends, she was battling cancer with surgery and several months of chemotherapy infusions. More than 20 years later, she remains cancer-free and has dedicated her career to helping others battle the disease.
But, those same chemicals that saved her life impacted her future health. Indeed, during the first year, nerve damage from the chemo caused her to permanently lose 50 percent of her hearing. They later affected her fertility as well.
Burns is not alone. Three in four pediatric cancer survivors experience long-term medical effects, sometimes years or even decades after treatment ended, and for 25 percent, these may be life threatening. And, like Burns’s hearing loss, many of these conditions seem to have no connection to the original cancer diagnosis. In addition, when childhood cancer survivors age out of pediatric care at 18 and transition to a new team, as well as to managing their own medical care, they face new challenges, “Will the PCP or adult care team know their long-term needs?” said Carolyn Vachani, MSN, managing editor of OncoLink, a cancer information website overseen by the Abramson Cancer Center.
“This group of survivors is at risk for slipping through the cracks during these major life and health transitions,” said Christine Hill-Kayser, MD, of Radiation Oncology and editor-in-chief of OncoLink, “and their medical and social needs can be neglected despite the best intentions and efforts.”
To help both this patient population and their clinical care providers better understand the potential risks of cancer treatment — and the necessary preventative steps — OncoLink has created Smart ALACC (Smart Adult Living After Childhood Cancer).
The pediatric cancer survivorship program delivers customized information about a childhood survivor’s health risks as an adult based on the cancer care they received, simply by entering what cancer treatments a patient received. For example, “if a childhood cancer survivor received a type of chemotherapy called an anthracycline, with or without radiation therapy to the chest, they will need monitoring for heart damage with echocardiogram every few years,” Vachani said. In addition, the plan includes information on practical things like school, employment, insurance, relationships, and sexuality.
According to Vachani, much of the information on ALACC has been available to the public through standard guidelines about late effects from childhood cancer treatments but it wasn’t always easily accessible or in a language that patients and families could understand.
Burns likes the site from both a medical and patient point of view. “When I printed out my cancer survivorship plan, it had bolded key takeaway points, which included symptoms to report, testing to get done yearly, and ways to manage long term side effects like fatigue. This makes it easy to remember,” she said. And I like the resources they provide at the end. It tells you that these people and organizations are here for you. You’re not alone.”
Read more about ALACC or create your own plan
OncoLink
OncoLink — the first cancer information website on the internet — has hit a new milestone: 100,000 cancer survivors from around the world have now received a personalized survivorship care plan through the website to guide them through life after cancer!
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