Childhood Cancer Survivorship Program
Fifty years ago a fraction of children diagnosed with cancer lived to see their next birthday. Today however, kids with cancer have a remarkable 85 percent survival rate. As childhood cancer survivors grow into adulthood, we are learning more about the potential physical, emotional and other long-term side effects of their cancer treatments.
Up to two-thirds of childhood cancer survivors experience late effects. Most remain unaware of their health risks and unfamiliar with how to reduce them. Children's Hospital created our Childhood Cancer Survivorship Program to serve this at-risk population by providing them needed education, support and treatment.
Established in December 2009, the two primary goals of our Childhood Cancer Survivorship Program are:
- To promote healthy lifestyles for former cancer patients as they enter adulthood
- To advance research efforts to discover the most effective treatments for cancer cure with the least amount of late effects on survivors
The Childhood Cancer Survivorship Program works with cancer-free patients who are at least three years from completion of treatment. We welcome patients treated at Children’s as well as survivors who received their cancer treatment at other facilities.
Program services include:
- Identifying and contacting potential program participants to enroll them
- Performing annual screenings to assess survivors’ health and development
- Reviewing each survivor’s entire childhood cancer treatment history to determine specific risks, including:
- all therapeutic modalities (radiation, chemotherapy, biotherapy, surgery, etc.)
- cumulative doses of chemotherapy and radiation
- complications or toxicities that occurred during therapy
- personal medical history
- current state of health
- Conducting diagnostic testing to gauge potential for treatment-related medical problems
- Coordinating referrals to other specialties (cardiology, endocrinology, pulmonology, etc) for management of known issues or for risk-based screening exams
- Providing late effects education to equip survivors to identify associated health risks as they grow into adulthood
- Informing patients and families of health issues common to survivors, including:
- hormonal problems
- learning difficulties and changes in school performance
- obesity and low activity levels
- alterations in growth and development
- increased risk for secondary cancers
- Conducting learning and vocational assessments
- Providing dietary counseling, academic counseling, job training and information on academic scholarships
- Offering social work services, when appropriate, to assist families in understanding their rights and the educational services available to children with learning disabilities
- Collaborating with social workers to assist with transition to adult primary care providers for continued monitoring of late effects
- Educating non-oncology medical providers on childhood cancer treatment late effects
- Assisting with potential insurance obstacles
All program participants receive an individualized binder containing:
- Personalized treatment summary of the survivor’s cancer treatment history – a simplified version for patients and their families and a complex summary for the medical providers of the patients’ choice
- Follow-up plan tailored exclusively to the patient, featuring individualized guidelines for future screenings utilizing evidence-based nationally recognized Children’s Oncology Group (COG) guidelines
- Educational materials specific to the child’s cancer therapy, individual risk factors and late effects assessment
Because of our program, hundreds of childhood cancer survivors now have a greater understanding of the late effects of their treatment and are empowered to reach their full potential as adults. We also help families understand that the goal of childhood cancer treatment extends beyond cure to curing children with fewer effects on their growth and development. Families in our program learn that clinical trials help researchers design studies to compare the efficacy of current treatment regimens to treatments with less potential for late medical problems, which will result in a higher quality of life for future childhood cancer survivors.
“Currently we see survivors through age 21 and then refer them to adult providers,” said Dr. Gates, pediatric hematologist/oncologist at Children's Hospital and physician director of the Childhood Cancer Survivorship Program. “However, the young-adult time is so important in establishing identity and behavior choices, plus many of the late effects issues like risk of second cancers, fertility, career and insurance start to impact survivors after the age of 21.”
Ways to support
Continued and increased funding will allow us to provide essential services to a greater percentage of survivors in the years to come. “The importance of this program is so high and the effort to run the program is great, but the funding to support programs like this is short of the need,” said Dr. Gates. “Each and every contribution is funding the quality and potential success of our children’s futures.”
Gifts to the Childhood Cancer Survivorship Endowment will benefit this valuable program in perpetuity. Donations to the endowment directly support the specialized, high-quality care that enables childhood cancer survivors to live healthier, happier lives.
“Having gone through cancer as a child and survived is not enough,” said Dr. Gates. “We need our children to thrive as adults.”
For more information on supporting the Childhood Cancer Survivorship Endowment, please contact the Foundation at 559-353-7100 or Foundation@ChildrensCentralCal.org.