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«Where are children and teens with cancer treated? Most children with cancer are treated at large pediatric cancer centers. And most take part in ...»

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Children Diagnosed With Cancer: What to

Expect From the Health Care System

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.

But you can learn to deal with all these changes! With time and experience, you and your child will get to know the medical centers and other places treatment is given. You’ll learn the routes and figure out all the shortcuts from home to the hospital. You’ll find the cafeteria and spots that offer needed privacy. The staff members will become real people and some key relationships will form.

Where are children and teens with cancer treated?

Most children with cancer are treated at large pediatric cancer centers. And most take part in clinical trials sponsored by the National Cancer Institute (NCI) through the Children’s Oncology Group (COG). Several medical facilities in the United States and abroad are members of COG and treat pediatric cancer patients. These treatment centers must follow strict guidelines to ensure that patients and families are fully informed about the potential value and risk of each clinical trial.

Still, families do not have to enroll their child in a clinical trial and can choose instead to get the standard treatment. You can learn more about this in Clinical Trials: What You Need to Know, and you can learn how to find a COG hospital near you in Pediatric Cancer Centers. You can read these online or call us for copies.

When hospitalized, children and teens are treated in inpatient oncology units. Outpatient treatment (when the child is not in the hospital) may take place in hospital clinics, doctor’s offices, or even at home. When they are treated at home, patients usually get services from a home health agency.

These services can include checking vital signs, giving chemo or medicines by vein, and other types of care. Home care staff may also teach family members to give drugs, manage equipment, and handle certain health problems.

Local pediatricians or family practice doctors may be involved in givingchemo, too. They may also take part in evaluating and treating symptoms, with guidance from the pediatric oncologist who is managing the child’s cancer treatment. This helps avoid long stays in the hospital. Every effort is made to have children go to school and continue their normal activities as much as possible while they are being treated.

How are children and teens with cancer treated?

Treatment depends on the type of cancer the child has, the stage of the cancer, the child’s age, overall health, and other factors. Cancer can be treated with chemo, radiation, surgery, or some combination of these. The doctor and other members of the cancer team will explain the treatments they recommend and answer questions before treatment starts. Treating childhood cancer often means consulting with medical specialists, especially if problems come up. Social, emotional, educational, and spiritual issues are also part of childhood cancer, and there are other specialists who can help patients and family with them. This is often called comprehensive care, and it’s discussed in the next section.

Keep in mind that the parent(s) or guardians must consent for the child’s treatment, which is why they usually want to learn all they can about the child’s cancer. If you’d like to know more about the type of cancer your child has, and about the treatments used, please call us. Or, you can find this information and more on our website at www.cancer.org.

What is comprehensive health care?

Comprehensive care is an approach that cares for the whole patient and all his or her needs, not just the medical and physical ones. Comprehensive care – using the services of many professionals working together – is the standard approach at all major medical centers that treat young people

with cancer. Some key aspects of well-designed comprehensive care are:

• State-of-the-art medical diagnosis and treatment, including the chance to take part in clinical trials

• A team of professionals who are experts in treating childhood cancer

• A wide range of services for patients and families, including education, counseling, support groups, advocacy, and other special programs to help improve the quality of life of patients and their families

• Referral to available local resources to help meet basic needs, such as meals, a place to stay during treatment, and transportation





• Patient and family education programs with up-to-date materials (written, audio, DVD, or computer programs)

• School programs, including contact with classroom teachers, teachers who work with homebound or hospitalized students, and help with going back to the student’s neighborhood school

• Organized efforts to help patients cope with treatment, tests, and procedures

• Advocacy programs to help with families’ financial concerns about treatment and related costs

• Consultation with community health care professionals (those near the child’s home)

• Ongoing research that looks at and evaluates the results of all treatments and services Who are the members of the comprehensive health care team?

Experts from different disciplines (medicine, nursing, social work, and many others) are part of the cancer care team that helps patients and families. Some are involved before diagnosis, and many stay involved for months and even years after treatment.

Team members offer different services and programs. They work together to figure out what each patient and family needs in order to best cope with cancer and its treatment. They design and coordinate a personal plan for care. While in the hospital, patients and families will see some team members every day. Others will only come when their help is needed with certain issues. During clinic visits the same or even more team members may be available. When patients are at home, team members generally stay in touch. They might offer help by phone or arrange community care.

Every treatment center is unique, so teams will have different members in different settings. Just before or just after diagnosis, parents are usually told about, or introduced to, all members of the cancer care team. All teams have doctors, nurses, and social workers. Teams may also include psychologists or psychiatrists, recreation therapists or child life workers, teachers, and chaplains.

Most teams think of parents as team members and want them to have an active role in caring for their child. The patients, whether they are children or teens, also are part of the team if they are mature enough.

Next are some lists of team members you might meet. Those most commonly seen are at the top of the lists.

Types of doctors who help care for children with cancer Pediatric oncologist: A doctor who specializes in cancers of children. (Pediatric means dealing with the health of children. Oncology means cancer.) They generally are board-certified, which means they’ve passed written national exams. They plan and direct cancer treatment. In a teaching hospital they serve as the doctor in charge. There might be more than one on the team, in which case they might rotate or switch places from one day to the next. They often work closely with physician assistants (PAs) and nurse practitioners (discussed in the next section).

Pediatric hematologist: A doctor who specializes in diseases of the blood and blood-forming tissues of children (Hematology means blood disease.) Pediatric hematology or oncology fellow: A pediatrician training to become a hematologist or oncologist Pediatric resident: A doctor training to become a pediatrician. They are in teaching hospitals, usually spending a certain length of time on the hematology or oncology service Medical students: Although not yet doctors, third and fourth year medical students in teaching hospitals are assigned monthly rotations on the hematology or oncology services and help care for patients Radiologist: A doctor with special training in diagnosing diseases by reading x-rays and other types of imaging studies, like CT scans and MRIs Pediatric surgeon: A doctor who treats medical problems in children with surgery Thoracic surgeon: A doctor who operates on the chest cavity Neurosurgeon: A doctor who specializes in operations on the brain, spine, or other parts of the nervous system Neurologist: A doctor who treats problems of the nervous system Ophthalmologist: A medical doctor who specializes in eye diseases Orthopedic surgeon: A surgeon who specializes in diseases and injuries of the bones Pathologist: A doctor who specializes in diagnosing and classifying diseases by lab tests, such as looking at tissue and cells under a microscope. The pathologist decides whether a tumor is cancer, and, if it is, the exact cell type.

Psychiatrist: A medical doctor who specializes in mental health and behavioral disorders.

Psychiatrists prescribe medicines and can also provide counseling.

Urologist: A doctor who specializes in treating problems of the urinary tract in both sexes, and of the genital area in males Endocrinologist: A doctor who specializes in diseases related to the glands of the endocrine system, such as the thyroid, pancreas, and adrenal glands Gynecologist: A doctor who specializes in women’s health and the female reproductive system Anesthesiologist: A doctor who specializes in giving medicines or other agents that prevent or relieve pain, especially during surgery Other doctors in the medical center and its clinics may play a part in caring for children and teens with cancer, depending on the diagnosis, treatment plan, or symptoms that develop during the course of treatment. All work closely with the basic cancer care team to coordinate care.

Other professionals who may help care for a child or teen with cancer There are many professionals and specialists other than doctors who may work with your child or family. Here are just a few more you may meet.

Physician assistants (PAs): These are certified and licensed medical professionals with master’s or doctoral level degrees. Physician assistants practice medicine on teams with doctors and other health care professionals, providing a wide range of services. They may specialize in certain diseases or fields of medicine depending on their training and experience.

Nurses: Like doctors, nurses have different roles and titles based on their education and training.

Nurses help care for and treat children and teens with cancer. They play an important part in teaching the patient and family about cancer and its physical and emotional effects. They also help set up care for the patient in his or her home community when referrals are made to home health agencies.

Teams of nurses may include:

Pediatric Nurse Practitioner or Family Nurse Practitioner (PNP or FNP; also called Advanced Practice Registered Nurses or APRNs): Registered nurses with a master’s or doctoral degree, special training, and certification in caring for children; they work closely with the doctor in planning care. The nurse practitioner may perform medical tests such as spinal taps and often works closely with the family to teach about the child’s cancer. Nurse practitioners are authorized by their states to perform expanded functions which may include writing prescriptions, diagnostic testing, and prescribing treatment.

Certified Oncology Clinical Nurse Specialists (OCNS): Registered nurses with a master’s degree and certification in oncology nursing who specialize in the care of cancer patients.

Oncology clinical nurse specialists may prepare and give treatments, monitor patients, prescribe and provide supportive care, and teach and counsel patients and their families.

Certified Pediatric Oncology Nurses (CPONs): Registered nurses who specialize in working with pediatric cancer patients, and who have passed national certification exams Registered nurses (RN): Nurses with associate or bachelor degrees who are licensed by their states to practice nursing. They give medicines (often including chemo), start and monitor IV medicines, take vital signs, and provide other hospital and clinical care. They also provide patient and family education. NPs, OCNSs, and CPONs are also RNs.

Licensed practical nurses (LPN): Nurses who have completed training in a vocational school or community college program and have passed a state licensing exam. They do many skilled tasks for patients at the bedside or in clinics.

Oncology social worker: This person has a master’s degree in social work and is an expert in coordinating and providing non-medical care to people with cancer. The oncology social worker provides counseling and assistance to patients and their families. They can help you and your child talk with the cancer care team and they can speak up about issues that are important to you. They can also help with issues like financial problems, housing (when treatments must be given at a facility away from home), and finding child care.

Recreational therapists or child life workers: These team members encourage children and teens to take part in play activities designed to maintain and improve physical and mental health.

Such activities also provide distraction and help relieve stress and anxiety during treatment, tests, and procedures. These experts work closely with social workers, team psychologists, and psychiatrists. They generally have advanced college degrees.



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