Dr. Hudson is Director of the Cancer Survivorship Division, Co-leader of the Cancer Prevention and Control Program, and a member of the Department of Oncology at St. Jude Children's Research Hospital. Since 1993, she has served as the Director of the After Completion of Therapy Clinic, which monitors more than 5,000 long-term survivors of childhood cancer treated through clinical trials at St. Jude. Dr. Hudson is also the Lineagotica Associate Editor for childhood cancers.
In light of this week’s Cancer Survivorship Symposium, the Lineagotica Blog team recently spoke with Dr. Hudson about the unique needs of survivors of childhood cancer.
Q: About how many childhood cancer survivors are there in the United States and how is this number changing?
A: The U.S. National Cancer Institute (NCI) Surveillance Epidemiology and End Results (SEER) program estimated that on January 1, 2010, there were about 379,100 people living in the United States who had been diagnosed with cancer during childhood or their teen years. If rates of incidence and survival are constant after 2009, then the number of pediatric cancer survivors in the U.S. is predicted to be more than 420,000 by the end of 2013 and will approach 500,000 by 2020. Using these estimates, around 1 of every 750 individuals in the U.S. is a survivor of childhood or adolescent cancer.
Q: How did you become interested in working with survivors of childhood cancers?
A: For 15 years, I served as the St. Jude principal investigator of trials that evaluated therapy regimens designed to reduce organ problems and second tumors in long-term survivors. Studying long-term health outcomes in children and adolescents with Hodgkin lymphoma grew into a broader interest in late treatment complications after childhood cancer. I became the Director of the St. Jude long-term follow-up program in 1993. It was a time when late effects like breast cancer and cardiovascular disease were becoming increasingly recognized and studied. I was intrigued that most of the adults treated at St. Jude for childhood cancer and their local physicians did not know about the links between childhood cancer and common late effects. These gaps in knowledge convinced me that educating survivors was essential. These survivors needed to know about their cancer history and health risks so they could advocate for their own health care needs.
It was during this time that I led an effort at St. Jude to begin screening our long-term survivors for health problems that had proven links to specific cancer treatments. These were our early efforts at risk-based screening. This means that we were reviewing specific aspects of a survivor’s health based on their treatment with a specific chemotherapy agent or radiation field and then assessing their risk of late effects. This initiative was eventually passed to our colleagues in the Children’s Oncology Group (COG) and was instrumental in the development of the Children’s Oncology Group Guidelines for Long-Term Follow-Up of Childhood, Adolescent and Young Adult Cancers. The COG Guidelines are one of the most comprehensive resources that cover the late effects associated with specific treatments for cancer in children. COG investigators monitor medical research about survivorship and regularly update the guidelines to make sure the screening recommendations are current.
Q: What are important things for the child or teen (and their parents) to know as soon as they finish cancer treatment?
A: Survivors should know three things: 1) specific details of their health history, 2) their associated health risks, and 3) recommended screening tests for their exposures. Consulting with a late-effects specialist can help clarify the risk level (recent changes in therapy should substantially reduce risks) and when health problems may arise (in some cases, very soon after exposure; in others, much later). Survivors need to recognize that their treatment was needed to achieve and sustain cancer remission and know that this is a good thing. So it is most important that survivors focus on issues that positively impact their health. For example, by participating in recommended screenings, they can increase the chances that health problems will be found early, when such problems may be more easily treated. Survivors should also be aware of the impacts common behaviors can have on cancer treatment-related health risks, like dietary intake, physical activity, tanning, and tobacco use. Everyone, even those who have not had cancer, should be mindful of how these behaviors affect their health.
Q: What are some of the longer-term concerns of these kids, both physically and emotionally?
A: Cancer treatments can affect many parts of survivors’ health. These aspects include growth and development, organ function, and fertility and reproduction. Some survivors will be at risk of other, second cancers (different from primary) because of both treatment and familial/genetic risks. Not every survivor has the same risks for a given long-term or late effect. Risk is affected by these factors:
Combination of treatments
Age at treatment
Time from treatment
Family and genetic factors
This is why it is important for survivors to know the details of their cancer history.
Following the cancer experience, survivors and their families may also have to face a spectrum of psychosocial issues. These issues may affect emotional health, interpersonal and intimate relationships, educational and career progress, and access to high-quality health care and insurance. Clinicians who supervise the care of survivors absolutely need to be aware of and screen for these potential health risks. They also need to help survivors gain access to resources and services that can address problems when they are identified.
Q: What are some resources parents and kids can use to help?
A: Parents and survivors should find out what resources are available at their pediatric cancer center. Ask if there is a long-term follow-up program or other programs that provide services for psychosocial needs of families and survivors. Most pediatric cancer programs have social workers and psychologists who work to address these needs.
A survivorship care plan is another important resource. One should be provided to all survivors as their care moves out of the cancer center. The survivorship care plan should briefly outline:
Details about the cancer diagnosis
Specific treatments like surgery, radiation, and chemotherapy
Possible treatment-related health risks
Recommended health screening
The care plan should also indicate who is responsible for certain aspects of the survivor’s care if more than one doctor is involved. Information about survivorship resources is available on this website. The Children’s Oncology Group also offers health screening recommendations and educational products about late effects.
Q: Is there anything else that kids who have survived cancer and their parents or caregivers should know?
A: Childhood cancer survivors and their caregivers should understand that many years of follow-up are needed to find health risks in children treated for cancer. Some late effects may not appear until a child has finished growing and developing. Sometimes they do not arise until later in adulthood. Recognizing the long-term and late effects of treatment has played a big role in driving change in childhood cancer treatment plans. Today, doctors carefully plan the amount and type of therapy. They take into account the severity of the cancer as well as the risk of serious late effects. The doses of chemotherapy agents that are linked to serious late effects are kept as low as is possible. Radiation treatment plans avoid exposure to nearby normal tissues. Surgeries have been developed to protect organ function.
Survivors need to participate in long-term follow-up care. Doctors need to know if these new treatment approaches have successfully prevented or reduced late effects.