The types of cancers that develop in children are often different from the types that develop in adults. Unlike many cancers in adults, childhood cancers are not strongly linked to lifestyle or environmental risk factors. Only a small number of childhood cancers are caused by DNA changes that are passed from parents to their child.

With some exceptions, childhood cancers tend to respond better to certain treatments.. Children might seem to do better with cancer treatments than adults because they usually do not have other health problems that can get worse with cancer treatment. On the other hand, children (especially very young children) are more likely to be affected by radiation therapy if it is needed as part of treatment. Both chemo, radiation therapy, and other cancer treatments also can cause long-term side effects, so children who have had cancer will need careful follow-up for the rest of their lives.

When a child or teen is diagnosed with cancer, families and parents will face and need to cope with many problems. Here are ideas for navigating the health care system after your child’s diagnosis. This is one in a series for parents and loved ones of a child with cancer. The other pieces cover how to cope with the cancer diagnosis, returning to school, dealing with the late effects of treatment, and financial and insurance matters.

When a young person is diagnosed and treated for cancer, both the patient and the family enter the complex, and often frightening world of modern medicine. Hospitals and medical centers can be big, confusing places. Hospital rooms can be scary. Professionals and staff members have questions to ask, tests to do, and information to share. But medical terms can sound like a foreign language. There are endless forms to fill out. Insurance or managed care providers need to be called to check coverage, try to get approval for tests and procedures, or question payment for care.

In the United States, most children and teens with cancer are treated at a center that is a member of the Children’s Oncology Group (COG). All of these centers are associated with a university or children’s hospital. These centers offer the advantage of being treated by a team of specialists who know the differences between adult and childhood cancers, as well as the unique needs of children and teens with cancer and their families. This team usually includes pediatric oncologists (childhood cancer doctors), surgeons, radiation oncologists, pediatric oncology nurses, physician assistants (PAs), and nurse practitioners (NPs). As we have learned more about treating childhood cancer, it has become even more important that treatment be given by experts in this area.

These centers also have psychologists, social workers, child life specialists, nutritionists, rehabilitation and physical therapists, and educators who can support and educate the entire family. (See Children Diagnosed With Cancer: Understanding the Health Care System for more on the professionals who help treat children with cancer.)

Any time a child is diagnosed with cancer, it affects every family member and nearly every aspect of the family’s life.

Cancer starts when cells in the body begin to grow out of control. Cells in nearly any part of the body can become cancer, and can spread to other areas of the body. To learn more about how cancers start and spread.

The types of cancers that develop in children are often different from the types that develop in adults. Childhood cancers are often the result of DNA changes in cells that take place very early in life, sometimes even before birth. Unlike many cancers in adults, childhood cancers are not strongly linked to lifestyle or environmental risk factors.

With some exceptions, childhood cancers tend to respond better to certain treatments such as chemotherapy (also called chemo). Children’s bodies also tend to handle chemotherapy better than adults’ bodies do. On the other hand, children (especially very young children) are more likely to be affected by radiation therapy if it is needed as part of treatment. Both chemo and radiation therapy also can cause long-term side effects, so children who have had cancer need careful follow-up for the rest of their lives.

In the United States, most children and teens with cancer are treated at a center that is a member of the Children’s Oncology Group (COG). All of these centers are associated with a university or children’s hospital. These centers offer the advantage of being treated by a team of specialists who know the differences between adult and childhood cancers, as well as the unique needs of children and teens with cancer and their families. This team usually includes pediatric oncologists (childhood cancer doctors), surgeons, radiation oncologists, pediatric oncology nurses, physician assistants (PAs), and nurse practitioners (NPs). As we have learned more about treating childhood cancer, it has become even more important that treatment be given by experts in this area.

These centers also have psychologists, social workers, child life specialists, nutritionists, rehabilitation and physical therapists, and educators who can support and educate the entire family.

Any time a child is diagnosed with cancer, it affects every family member and nearly every aspect of the family’s life.

Treatment for childhood cancer is based mainly on the type and stage (extent) of the cancer. The main types of treatment used for childhood cancer are:

  • Surgery
  • Radiation therapy
  • Chemotherapy

Some types of childhood cancers might be treated with high-dose chemotherapy followed by a stem cell transplant. Newer types of treatment, such as targeted therapy drugs and immunotherapy, have also shown promise in treating some childhood cancers. Often more than one type of treatment is used.

There are exceptions, but childhood cancers usually respond well to chemotherapy because they tend to be cancers that grow fast. (Most forms of chemotherapy affect cells that are growing quickly.) Children’s bodies are also generally better able to recover from higher doses of chemotherapy than are adults’ bodies. Using more intensive treatments gives doctors a better chance of treating the cancer effectively, but it can also lead to more short- and long-term side effects. Unlike chemotherapy, radiation can often cause more serious side effects in children (especially very young children) than in adults, so its use sometimes needs to be limited. Doctors do their best to balance the need for intensive treatment with the desire to limit side effects as much as possible.

The cancer treatment team

Children with cancer and their families have special needs.  Treatment of childhood cancer is coordinated by a team of experts who know the differences between adult and childhood cancers, as well as the unique needs of children with cancer and their families. This team usually includes:

  • Pediatric oncologists: doctors who specialize in using medicines to treat children with cancer
  • Pediatric surgeons: doctors who specialize in performing surgery in children
  • Radiation oncologists: doctors who specialize in using radiation to treat cancer
  • Pediatric oncology nurses: nurses who specialize in caring for children with cancer
  • Nurse practitioners (NPs) and physician assistants (PAs): nurses and other professionals who are specially trained and licensed to practice medicine alongside doctors.

During and after cancer treatment, most families are mainly concerned about the short- and long-term effects of the cancer and its treatment, and concerns about the cancer still being present or coming back.

It is certainly normal for families to want to put the cancer and its treatment behind them and to get back to a life that doesn’t revolve around cancer. But it’s important to realize that close follow-up care is a central part of this process that offers children the best chance for recovery and long-term survival.

Once treatment is finished, the health care team will set up a follow-up schedule. For many years after treatment, it is very important that children have regular follow-up exams with the cancer care team. As time goes by, the risk of the cancer coming back goes down. Doctor visits might be needed less often, but they are still important because some side effects of treatment might not show up until years later.

Because of major advances in treatment, more children treated for cancer survive into adulthood. But treatments might affect children’s health later in life, so watching for health effects as they get older has become more of a concern in recent years. The earlier any problems are recognized, the more likely it is they can be treated effectively.

Childhood cancer survivors are at risk, to some degree, for several possible late effects of their cancer treatment. It’s important to discuss what these possible effects might be with your child’s medical team. The risks for each child depend on a number of factors, such as the type of cancer, the specific cancer treatments used, the doses of cancer treatment, and the child’s age at the time of treatment. It’s very important to discuss possible late side effects with your child’s health care team, and to make sure there is a plan to watch for these problems and treat them, if needed. Some of the possible late effects of cancer treatment include:

  • Heart or lung problems (due to certain chemotherapy drugs or radiation therapy to the chest area)
  • Slowed or delayed growth and development (in the bones or overall)
  • Changes in sexual development and ability to have children
  • Learning problems
  • Increased risk of other cancers later in life