Coping With the Diagnosis
Just the thought of a child getting cancer can be frightening and overwhelming. But while cancer can be life threatening, there’s encouraging news. Over the last few decades, improved therapies have helped childhood cancer survival rise to more than 80%. Many kinds of cancer can now be cured or controlled to help give children a better quality of life into adulthood.
The most common type of childhood cancer is leukemia, a cancer of the blood. Leukemia begins in the bone marrow, the spongy substance inside our bones where blood cells are made. Other childhood cancers include lymphoma (blood cancer that begins in the lymph glands) and solid tumors (abnormal clumps of tissue). Solid tumors may occur throughout the body, such as in the brain, kidney, muscle or bone.
The causes of childhood cancer are largely unknown. Childhood cancer can occur suddenly, with no early symptoms, and might get detected during a physical exam.
“If you notice something unusual in your child—unexplained symptoms, not growing properly, belly distended, blood in urine—take your child to the doctor,” says Dr. Nita Seibel, a pediatric at NIH. If the doctor suspects cancer, a series of tests will help identify the type of cancer, where it’s located and whether it has spread to other parts of the body.
Cancers in children can be different from adult cancers. When you’re researching the diagnosis, be sure you’re looking at how that cancer affects children. Often, the outcomes may be better for children than for adults with the same type of cancer.
For instance, Seibel says, childhood tumors tend to respond better to treatment than do tumors in adults. Cancer cells tend to grow very swiftly in the types of tumors seen in children. So therapies can be selected to interrupt this rapid growth. Children with leukemia, non-Hodgkin’s lymphoma or certain solid tumors tend to have a good outcome.
Doctors design treatment plans specific to each child. Children usually receive one or more of the following treatments: chemotherapy drugs; radiation; surgery (for solid tumors); ; or a bone marrow or blood stem cell transplant. Unpleasant side effects are common and can include hair loss, nausea and diarrhea. But side effects tend to fade shortly after treatment ends.
Dr. Stephen Hunger, a pediatric cancer specialist at the University of Colorado, says that most advances in treatment have come from improvements to chemotherapy drugs. For instance, treatment for childhood leukemia 30 years ago often involved radiation to the brain. But radiation can cause health problems later in life. Now, with improvements to chemotherapy, oncologists are using radiation less, if at all, for children with leukemia and some other types of cancer. “This is a good change because of the long-term side effects to thinking and learning, and the risk of later developing brain tumors,” Hunger says.
Improvements to treatment are often based on clinical studies of people who have cancer. Children might be eligible to participate in certain clinical studies of cancer shortly after their diagnosis.
“NIH supports clinical trials for most types of childhood cancer,” says Dr. Malcolm Smith, a pediatric oncologist at NIH. For types of cancer that already have good treatments, he says, trials aim to maintain survival while reducing side effects. Other studies evaluate the safety and effectiveness of experimental therapies for cancers that lack good treatment options. When standard therapy fails, some children may be able to participate in clinical trials that test promising new agents.
One NIH-supported cancer research network links thousands of pediatric cancer experts. Together, they conduct clinical research trials for common types of childhood cancers. Another NIH-sponsored research group is testing potential new drugs for pediatric brain tumors at hospitals nationwide. To learn more about cancer trials, go to www.cancer.gov/clinicaltrials/learningabout.
is giving scientists a detailed picture of cancer cells: how they grow, survive and spread. Studying cancer at this molecular level can lead to more targeted therapies. “Instead of treating a type of brain cancer one way, for example, there may be subtypes defined at the molecular level that should be treated differently,” says Smith.
These molecular studies can also lead to new clinical approaches. For instance, in one NIH-funded study, an experimental immunotherapy significantly improved survival rates in children with a type of cancer called neuroblastoma. This cancer is responsible for 12% of all cancer deaths in kids under age 15. The new therapy is based on a specially designed antibody—a type of immune system molecule—that latches onto the surface of neuroblastoma cells. The antibody flags the cancer cells for destruction by the body’s own immune system.
When a child is being treated for cancer, family members may find it hard to move forward with everyday life. After chemotherapy or radiation therapy, children may be tired and need more rest. Even so, kids with cancer have the same needs as other young people.
Encourage your child to stay in touch with friends. Keeping contact is easier if your child can keep going to school. Contact your child’s teachers and school nurse to discuss the disease, treatment, absences and any needed changes in activity.
Children often worry about how their classmates will act toward them, especially if a child has missed a lot of school or has noticeable changes such as hair loss. Let your child know that many people, including kids, are uneasy about serious illness. These people may act differently or say hurtful things. Many kids will be accepting of a child with cancer, but they may have a lot of questions. Talk to your child about ways to answer.
Be open with your child about the diagnosis and upcoming treatments. Age-appropriate discussions might help ease stress, fear and uncertainty. Emphasize that cancer isn’t contagious and isn’t anybody’s fault.
If your child is diagnosed with cancer, you may need support as well. You and your family can get help from many sources. For some ideas, visit www.cancer.gov/cancertopics/coping.
NIH works to improve existing cancer therapies and develop new approaches. “The focus is on curing cancer—not just prolonging life—to restore the natural order of things,” says Hunger, “so these children will outlive their doctors and their parents.”