Glossary of TermsGlossary of Terms
Absolute neutrophil count
Measures how many neutrophils are present.
Adjuvant chemotherapy
Chemotherapy used after surgery for children with low-risk or intermediate-risk neuroblastoma.
Advanced practice provider (APP) (nurse practitioner or physician’s assistant)
A person with advanced training to help diagnose and care for your child. The APP duties include ordering diagnostic and laboratory testing, prescribing medication, providing counsel and education, and care coordination for your child.
Anemia
Low red blood cell count. When your child’s hemoglobin and hematocrit are low, it is called anemia.
Anesthesia
A loss of feeling or awareness, caused by drugs or other substances. Anesthesia keeps patients from feeling pain during surgery and other procedures. Local anesthesia is a loss of feeling in one small area of the body. Regional anesthesia is a loss of feeling in a part of the body, such as an arm or a leg. General anesthesia is a loss of feeling and a complete loss of awareness that feels like a very deep sleep.
Antibody therapy
Helps to find remaining neuroblastoma cells that are hiding inside of your child’s body, so the immune system can destroy them.
Apheresis
The process of collecting your child’s stem cells.
Autologous
From your child rather than from a donor or another person. An autologous stem cell transplant involves transplanting your child's stem cells back into their body.
Bias
In a scientific research study or clinical trial, a flaw in the study design or the method of collecting or interpreting information. Biases can lead to incorrect conclusions about what the study or clinical trial showed.
Biopsy or biopsies
The removing of cells or tissues from the body so they can be looked at by a pathologist with a microscope. A biopsy is done to determine the exact type of cancer your child has.
Blood transfusion
When whole blood or parts of blood are given to a patient. The transfusion is usually given through an IV or a central line.
Bone marrow aspirate and biopsy
A procedure done to look at the health of your child's blood cells. To do this, a needle is used to remove liquid bone marrow from inside the hip bone. Oncologists might also remove a sample of spongy bone marrow from the same hip bone.
Bone scan
Provides a picture of all your child’s bones at one time; the scan uses a radioactive dye called an isotope that highlights abnormal areas in the bone.
Broviac/Hickman
A central line placed through the chest of your child, into a vein above the heart.
Case Manager
A person who works with the team to coordinate any home care or therapy needs after you return home from a hospital visit.
Catecholamines
Hormones made by the body that may also be made by neuroblastoma tumors.
Central line or CL
A flexible tube through which your child’s healthcare team can deliver cancer therapy and supportive care. The CL is surgically placed in your child’s body and connects directly to a central vein above the heart.
Chemotherapy
Medicines that stop cancer cells from growing, either by killing the cells or stopping them from dividing and reproducing.
Child life specialist
A person with specialty training in child development. A child life specialist helps prepare your child for procedures, treatment, and coping with cancer.
Cis-retinoic acid
A differentiating agent given with antibody therapy to help neuroblastoma cells transform into mature nerve cells.
Clinical trials
Research studies that test new ways to improve treatment in a group of people with a certain disease. These trials test new ways to screen, prevent, diagnose, or treat a disease.
Combination chemotherapy
When more than one chemotherapy medicine is given to the patient.
Complete blood count (CBC)
A laboratory test to measure the number of blood cells in your child’s body.
Complete response or CR
When all signs of cancer disappear in response to treatment. However, this does not always mean the cancer has been cured.
Consolidation
Occurs after the induction chemotherapy/surgery phase of high-risk neuroblastoma treatment. Consolidation therapy is used to kill any cancer cells that may be left in the body. It may include radiation therapy, a stem cell transplant, or treatment with drugs that kill cancer cells. Also called intensification therapy and postremission therapy.
Constipation
When bowel movements (stool) are hard or difficult to pass. This can lead to other symptoms like pain, decreased appetite, hemorrhoids or tears in the skin which could lead to infections.
CT scan or computerized tomography scan, also known as a CAT scan
Uses a computer to make 3D pictures of the bones, soft tissue, and blood vessels to see the exact size and location of a tumor.
Curie score
Measures the extent of neuroblastoma in the body and helps predict how severe the disease is.
Cycle
A length of time that includes treatment followed by a period of rest with no treatment. This is repeated on a regular schedule. For example, 1 cycle may be treatment given for 1 week followed by 3 weeks of rest. Also called treatment cycle.
Cytokines
Proteins that may be used to boost the immune system.
Diarrhea
Frequent, watery or loose stools (often more than 3 loose stools in a day).
Disease stage
Describes how much cancer is in the body and where it is located.
DNA index
The amount of DNA in each cell.
Event-free survival or EFS
The length of time after treatment that your child has no changes in their disease, such as the disease coming back (relapse) or death. These changes are called “events”.
Feeding tube
A small, soft tube that is inserted through your child’s nose and goes into the stomach. This is called a nasogastric or NG tube.
Fellow
A doctor who has completed medical school and residency, who is now receiving specialty training in pediatric oncology.
Fever
An increase in body temperature, usually caused by disease.
Follow-up care
Given to a patient over a long period of time after finishing treatment for a disease. It includes regular medical checkups, which may include a physical exam, blood tests, and imaging tests.
Hemoglobin and/or hematocrit
A measure of how many red blood cells are in blood.
High-risk neuroblastoma
Can be aggressive and hard to treat. It has a higher risk of relapse and it requires intensive treatment with multiple types of therapy
Histology
The study of tissues and cells under a microscope.
Homovanillic acid or HVA
A catecholamine or hormone that is made by the body and may be released by neuroblastoma cells.
Incontinence
Being unable to make it to the toilet in time.
Induction
Multiple cycles of chemotherapy to shrink the tumor and surgery to remove any remaining tumors. Stem cell collection also happens during induction and it is usually the first phase of high-risk neuroblastoma treatment.
In-patient
Means the patient is admitted to the hospital
Intermediate-risk neuroblastoma
Having a tumor that is not easy to remove with surgery alone.
Intravenously
Through a vein.
Isotope
A dye that shows abnormal areas in bone.
Late effect
A health problem that appears months or years after therapy ends. Late effects can be physical, emotional, and/or cognitive.
Long-term side effect
A condition that may occur as a result of cancer treatment that can continue for months or years after the end of treatment.
Long-term follow-up care
Given to a patient over a long period of time after finishing treatment for a disease. It includes regular medical checkups, which may include a physical exam, blood tests, and imaging tests.
Low-risk neuroblastoma
Having a tumor that is usually in one area and can be removed by a surgeon.
Metastasize
To spread from one part of the body to another part.
Metastatic
Disease that has spread and has not completely responded to treatments.
MIBG or meta-iodobenzylguanidine scans
A scan that uses a chemical with small amounts of radioactive iodine to find neuroblastoma tumors.
MIBG therapy
A combination of MIBG and a radioactive iodine (I-131) that delivers targeted radiation therapy to tumor cells through an IV to destroy the cells.
MRI or magnetic resonance imaging scan
A scan that uses magnets, radio waves, and computers to take a series of detailed pictures of the inside of the body.
Mucositis
Mouth sores that are caused by chemotherapy medications and radiation therapy to the head and neck and affect the lining of the gastrointestinal tract.
MYCN amplification
Tumors with more than 10 copies of the MYCN gene. Tumors, such as neuroblastoma, that are MYCN-amplified are more likely to spread in the body and less likely to respond to treatment.
Myeloablative
High-dose chemotherapy given during the consolidation phase of high-risk neuroblastoma treatment.
Nausea
Feeling sick to the stomach or queasy, or having an upset stomach, that may lead to vomiting or throwing up.
Neoadjuvant chemotherapy
Chemotherapy used before surgery.
Nervous system
A network of nerve tissue in the body. It includes the central nervous system (the brain and spinal cord), the peripheral nervous system (nerves that go from the spinal cord to the rest of the body), and other nerve tissue.
Neuroblasts
Early or immature forms of nerve cells that usually grow into mature nerve cells.
Neutrophils
White blood cells that are important in defending the body from infection and invading cells.
Neutropenia
A low neutrophil count (less than 500).
Non–high-risk neuroblastoma
Low- or intermediate-risk neuroblastoma.
Objective response or OR
Means a patient had a complete or partial response to treatment.
Oncogene
A gene that is a changed form of a gene involved in growth of normal cells and may cause the growth of cancer cells.
Oncology nurse
A person trained to care for patients with cancer in the hospital and the clinic.
Outpatient
A patient who visits a healthcare facility for diagnosis or treatment and stays for less than 24 hours and usually doesn’t spend the night there.
Overall survival or OS
Length of time, after either the date of a cancer diagnosis or the start of treatment, that patients are still alive.
Palliative care team
A separate team of oncologists, nurse practitioners, nurses, social workers, and chaplains who specialize in managing symptoms and providing support during a serious illness. They work closely with the healthcare team to improve quality of life for the patient and their family.
Partial response or PR
A decrease in the size of the tumor or extent of cancer in the body.
Pediatric oncologist (also known as the attending physician)
An oncologist who has completed training to provide specialty care, such as cancer care. The attending physician supervises the care team and directs the care plan for your child.
PET Scans
PET Scans may be used in place of MIBG scans if your child's neuroblastoma is not 'MIGB avid'.
Peripherally inserted central catheter or PICC
A central line that is placed through a vein in your child’s arm and that travels up to a large vein above the heart.
Petechiae
Pinpoint, unraised, round red spots under the skin caused by bleeding.
Pharmacist
A person with advanced training to prepare medicine and nutritional support for your child. A pharmacist may also provide education on medicines your child receives.
Phase (in a clinical trial)
Part of the clinical research process that answers specific questions about whether a treatment that is being studied works and is safe.
Physical, occupational, or speech therapist
A person with specialty training to work with your child to maintain or recover developmental skills.
Platelets
Help form blood clots to stop or slow down bleeding.
Platelet count
Measures how many platelets are present in blood.
Port
A central line placed underneath your child’s skin on their chest. Special needles send cancer therapy through the port.
Postconsolidation, also called antibody therapy
The last phase of therapy for high-risk neuroblastoma. This phase is given after your child’s stem cell transplant and uses a monoclonal antibody, cytokines, and retinoic acid.
Premedications or premeds
Medications given to your child with antibody therapy to help make the some of the side effects less severe.
Prognosis
The likely outcome or course of a disease; the chance of recovery or recurrence.
Randomized controlled trial
A trial that uses the same conditions to study 2 therapies at the same time, so it is possible to compare their effectiveness and safety.
Red blood cells
Carry oxygen from the lungs to all parts of the body.
Refractory
Disease that does not respond to treatment. The disease may be resistant at the beginning of treatment or it may become resistant during treatment.
Registered dietitian
A person trained to help the team evaluate the nutritional needs of a patient. They also provide education and nutritional support.
Relapse
Disease that has gotten worse during, or returns after, treatment.
Remission
Means the disease can no longer be detected.
Rescue
A method of replacing blood stem cells destroyed by treatment with high-dose chemotherapy or radiation therapy.
Resection
Removal of the tumor during surgery.
Resident
A doctor who has completed medical school and now is receiving specialty training in pediatrics. These doctors are closely supervised by the attending physician.
Risk group or risk level
Used to help the healthcare team determine the best way to treat your child. For neuroblastoma, children fall into one of the following categories: high-risk or non–high-risk (low or intermediate) neuroblastoma.
Sample size
The number of patients enrolled in a study.
Sedation
A state of calmness, relaxation, or sleepiness caused by certain drugs.
Single or limited institution
Clinical studies where enrollment is done at one facility or a small number of facilities.
Stem cell
Cells that live in the blood and bone marrow and can develop into new blood cells.
Stem cell transplant
Replacing bone marrow cells in a patient by giving them new blood-making cells.
Supportive care
Given to improve the quality of life of patients with a serious or life-threatening disease. Also called comfort care, palliative care, and symptom management.
Survival rate
The percentage of people in a study or treatment group who are still alive for a certain period of time after they were diagnosed with or started treatment for a disease, such as cancer.
Thrombocytopenia
Low platelet count.
Total parenteral nutrition or TPN
A special solution given through the central line if the patient cannot tolerate food going into the stomach.
Tracer
A chemical with a small amount of radioactive iodine that helps oncologists see where the cancer is inside the body.
Treatment arm
A group of participants in a clinical trial.
Treatment summary
A document that lists the therapies given to your child throughout treatment.
Tumor biopsy
The removing of cells or tissues from the body so they can be looked at by a pathologist with a microscope.
Ultrasound or sonogram
Uses sound waves to create a picture of tissues or organs inside the body.
Vanillylmandelic acid or VMA
A catecholamine or hormone that is made by the body and may be released by neuroblastoma cells.
Vital signs
Include temperature, blood pressure, breathing rate, and heartbeat.
Watch and wait
Close observation of infants with neuroblastoma to see if a tumor disappears or starts to grow.
White blood cell
A type of blood cell that helps fight infection.
X-rays
Pictures of the specific parts of the inside of the body.