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Patient Question

What Should You Know About Dealing with Childhood Cancers?



Professor and Vice Chair of Pediatrics for Academic Affairs
Director, Pediatric Hematology/Oncology
Associate Director, Stony Brook University Cancer Center
Expert Answer

Dr. Parker is a leading expert on childhood cancers. Here, he gives some insight to parents on what they should know.

What do parents most often want to know about childhood cancers?
Their number one concern is what they could have done differently to prevent their child's cancer. The truth is, there is nothing they could have done. It is not their fault. We don't know what causes childhood cancer. As far as we know, for most childhood cancers there are no identified environmental factors. The issue of "early detection" is relative. The signs of cancer usually noticeable in children, such as fatigue, fever, loss of appetite, swollen lymph nodes, belly pain, etc. are the same as for most common childhood illnesses. Consequently, a diagnosis of cancer is generally not made until these complaints have persisted beyond what is usual for a typical illness. So just because the symptoms were there for a while does not mean that the parent or pediatrician "missed" something. In addition, the most common form of cancer in children, acute leukemia, is everywhere in the blood by the time it can be diagnosed, and this fact has no impact on the curability of the leukemia.

What can parents do?
Once the diagnosis has been made, parents can become their child's advocate and key members of the treatment team. At Stony Brook, for example, parents and other family are invited to be active members of the multidisciplinary treatment team. We believe that by having knowledgeable, involved parents, the quality of care is improved. At Stony Brook, your family becomes our family.

What kinds of decisions do parents face?
The first major one is where to pursue treatment. Often a parent's first instinct is, "We'll go anywhere for the best treatment, even out of state." While the sentiment is absolutely right, the reality is a little different. First, know that because of shared protocols and best practices, almost every pediatric oncology program delivers the same standard of care with similar outcomes. Instead, think about the level of support the hospital can deliver to you and your family. Consider the toll extended travel times can take on your sick child, as well as the rest of the family, especially if there are other small children at home. That's why many times the best choice is a facility close to home. There are times, however, when it makes sense to travel for treatment, for instance if the child has a rare cancer for which only highly experimental therapy is recommended; or, if the child needs a complex surgical procedure that only a few pediatric surgeons can perform.

How should a parent evaluate a treatment facility?
In addition to the ease of access to the hospital and the expertise of your child's medical team, there are two key things you need to look at in case your child has an emergency situation: the quality of the Pediatric Intensive Care Unit (pICll) and how sophisticated the Blood Bank is. Stony Brook's Blood Bank is top notch, and I believe our PICU is better than any in the New York area.

What else does Stony Brook offer?
Our innovative School Re-Entry Program is a national model. Run by a nurse practitioner and a child life expert with a background in elementary education, the program works with schools in Suffolk and Nassau Counties to return children to school in the most productive setting possible. The goal is to provide open communication between hospital, school, and family, and remove any obstacles that may impede a smooth transition. For example, kids with cancer may be self-conscious about their changed appearance. Other children may be afraid of "catching cancer." A teacher may not know how to accommodate a disability. School nurses may not understand the child's medical regimen. Our team makes classroom visits and presentations, answers questions, advocates for the child, coordinates services, works with faculty and administration, and generally helps the child get the education he or she needs, in a supportive environment.

What are the cure rates for childhood cancers?
Thanks to medical innovations and new protocols, 75 percent to 80 percent of kids will survive, and those with the most common childhood cancer, acute lymphatic leukemia, have 80 percent to 85 percent cure rates. Our goal at Stony Brook is for kids to be cured and to grow up to be healthy, well-adjusted adults.

For more information about childhood cancers, call the Stony Brook University Cancer Center at (631) 638-1000.

For Additional Information Contact (631) 444-4000

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