May 26, 2009 - Childhood Cancer Survivorship: Challenges, Strategies, Resources
- Common issues families face through diagnosis, treatment and survivorship
- The common late effects of treatment, including physical, cognitive, social and developmental issues
- Coping strategies and interventions for managing long-term challenges
- Strategies and resources to help families advocate for and coordinate educational, psychosocial and long-term follow-up services
Daniel Armstrong, Ph.D.
Professor and Associate Chair, Department of Pediatrics
Director, Mailman Center for Child Development
Director, University of Miami Sickle Cell Center
University of Miami Miller School of Medicine
Associate Chief of Staff, Holtz Children's Hospital at the University of Miami Jackson Memorial Medical Center
Nancy F. Cincotta, MSW, LCSW, ACSW, BCD
Psychosocial Director, Camp Sunshine, a national retreat for families of children with life-threatening illnesses and bereaved families
Within the next few years, we expect that about one in 900 adults will be childhood cancer survivors. As they grow into adults, survivors of childhood cancer are giving back to society. If you have a young child, you can look forward to the time when your child will be one of those survivors making our world a better place.
Dr. Armstrong reviews cognitive late effects with a focus on neurodevelopmental problems. He addresses topics such as specific drugs and their associated late effects, risk factors for late effects, common late effects, testing and interventions.
Ms. Cincotta discusses the ways families cope to survive crises. Ms. Cincotta reflects the wisdom of parents who have spoken with her over the years about their experiences. She expresses hope that knowing about the availability of information and resources will make the childhood cancer journey better for everyone.
Dr. Armstrong and Ms. Cincotta also answer audience questions from parents.
- Overall survival rates for all types of childhood cancer are close to about 80 percent. For many types of leukemia and lymphoma, they're in the 90 percent range. As we see more and more children survive, we're learning about late effects, the problems that may appear years after treatment is finished.
- The Children's Oncology Group website provides information about children's cancer treatments, short- and long-term effects, recommendations for follow-up (surveillance) and treatments for late effects.
- Cancer treatment in children can affect growth and development, reproductive capacity, bone growth and bone deterioration, the heart, breathing--almost every area or function in the body.
- The effects are specific to the types of treatment a child receives. It's important to have a conversation with your child's doctor about specific late effects of a particular drug or treatment.
- Neurodevelopmental problems affect a child's ability to learn, remember and perform--because of either damage to the brain and its blood vessels or brain development that's interrupted by treatment, which affects the way the brain uses oxygen and nutrients.
- Our brains are constantly growing and developing, from the time before we're born until we're about 30. Some evidence shows that certain cancer treatments can slow down a child's learning ability. The biggest effect seems to be on the part of the brain that develops after treatment is started. The parts of the brain that develop before treatment seem to be relatively safe.
- Some types of chemotherapy can cause learning problems. Radiation therapy to the brain is probably the leading cause of cognitive late effects. Discuss the dosage of radiation therapy with your child's doctor to understand the potential effect on your child.
- How do we pick up late effects? One method is "neuropsychological testing." Schools typically don't have people trained to do this testing or interpret the tests in specialized areas related to memory, processing speed, computerized tests of attention and executive function tests. We recommend finding a neuropsychologist to do an evaluation, if possible, to define the scope of your child's abilities. It also provides the school system with information about how to best help your child.
- A baseline evaluation as early as possible after diagnosis is recommended. However, with acute lymphoblastic leukemia, the evaluation should be delayed until after induction therapy and sometimes after consolidation therapy. If you can get an evaluation in the first year of treatment, you're usually in good shape.
- Testing should be repeated every two or three years or any time you, your doctor or teachers notice a change so you can track what's going on and intervene as early as possible. We also recommend that you have this done around the eleventh grade to help get accommodations for standardized testing like the SAT.
- Several interventions are being looked at, such as stimulant medications. Talk with your oncologist before you give any of these drugs to children, especially those who have risk of heart complications.
- Another intervention is called "cognitive rehabilitation," a strategy that's built on repetitive skill learning to exercise the brain. There's some indication that children who have acute traumatic brain injury and begin cognitive rehabilitation right afterwards can recover function.
- Most families will become familiar with the Individuals with Disabilities Education Act (IDEA) or the 504 regulations. These are federal laws that provide support for either special education services under IDEA or for what are called "accommodations" under the 504 plan. Talk with your school's special education staff to ensure they're aware of these connections and are providing the services.
- There are a number of materials for parents from The Leukemia & Lymphoma Society, such as Learning and Living with Cancer, a book from Candlelighters called Educating the Child with Cancer and a book from The National Academies Press, Childhood Cancer Survivorship.
- Survivorship for childhood cancer patients and their families is really about the partnership between all the healthcare professionals and parents pushing forward to learn and understand more.
- A diagnosis of childhood cancer is a family affair. This is true whether you're talking about the initial period, learning about cancer, or discussing late effects down the road. The family's journey in life begins a change on the diagnosis date. The cancer journey is unlike any other. As you enter this world, you're struck by your lack of knowledge in this area.
- The journey's beginning can be quite challenging. Your family's aspirations and goals may be changed. We hear the phrase that there's a "new normal" for families. Things do change, and you adapt to them.
- We often think about survivorship as the survivorship of the illness, getting past the medical part of the illness and dealing with any late effects that may arise. However, there is also the emotional life of the family, which is a significant part of treatment and survivorship. Cancer survivorship is complicated because it's not surviving a crisis for a day, a week, a month, a year; it's about surviving for "the long haul." Survivors are teaching us what it's like to live further down the road.
- How and what do you tell your kids about cancer and about late effects? You want to be able to give them information consistent with their age, ability and temperament, which change over time. Your child may not want to know about certain treatment components or different things before they happen, or you may have a child who wants to be prepared and know about them before it happens.
- The impact of a child's diagnosis on a sibling is great. The more information siblings have, the more they're able to be part of the family and feel like they're part of what's happening. Sometimes it doesn't matter who's diagnosed--cancer is happening to the family. It matters that family members can feel they're going through this together.
- When a child is diagnosed, what do we hope for? Often we hope that the diagnosis is wrong. But once it's clear that the diagnosis isn't wrong, we hope the illness will go into remission, that treatment will be manageable, that everything will get better. We hope our child won't experience late effects. Or the late effects will be minimal and manageable. We hope for a normal life and that our child will grow up and have a family and keep growing. However, hope needs to be refueled. Hope rekindles the spirit for people and helps them function. Children are innately hopeful and helpful, and they're also inspiring. Situations and environments where people can get to know each other, see a range of coping skills and learn from each other's experiences enable and facilitate the journey forward for families.
- We can also find hope in learning what's going on with our child--the reality of information can make us hopeful. Testing by professionals who know the kinds of issues your child is facing and reaching out to people and programs for help are important.
Questions Asked by the Childhood Cancer Community
- Is there any research on socialization and behavioral issues to help these kids so they can establish friendships after their treatment?
- I am a 30-year survivor; are there any groups for older childhood survivors?
- Would you recommend a cognitive assessment later on for a child who didn't have one at the time of diagnosis?
- Could you offer some general suggestions about where to go to get a cognitive assessment?
- Does my child need an IEP now even though we might not be seeing significant issues until a few years from now?
- Can you provide more information, including contraindications, about using stimulant medications to help with the attention and memory? Are there any natural alternatives?
- Do you think that cognitive therapy, which is costly where I live, is important to do?
- After my child's treatment ends, how long will I need to keep an eye out for late effects?
- Who can help parents determine whether public schools or private schools will offer their child more?
This program was supported by The Leukemia & Lymphoma Society.