PARENTS AND PATIENTS

As a parent of a child who has cancer, remember that you are not alone. You can get help from cancer support groups, where you will be given the opportunity to talk to people who understand what you’re going through. By joining a cancer support group, you can spend time with people who share or understand your experience. This simple act of sharing can make an enormous difference to the way you feel.

• Childhood Cancer International – CCI: CCI is the largest patient support organization for childhood cancer. It is a global, parent-driven non-profit that represents more than 170 parent organizations, childhood cancer survivor associations, childhood cancer support groups, and cancer societies, in over 90 countries, across 5 continents.
  https://www.childhoodcancerinternational.org/
• CCI Europe: (CCI Europe, or CCI-E) represents childhood cancer parents’ and survivors’ groups as well as other childhood cancer organizations in Europe: 67 organizations in 34 European countries are members of CCI. CCI Europe works together with all relevant stakeholders for the same aim, namely, to help children and adolescents with cancer to be cured, with no – or as few as possible – long-term health problems/late effects.
  https://ccieurope.eu/

A clinical trial is a type of research done by doctors whose aim is to confirm the safety and effectiveness of new promising treatments for pediatric tumors. Scientists and doctors are always developing innovative, more effective and less toxic treatments to improve patients’ survival and quality-of-life, and many current treatments are the result of past clinical trials. In cancer research, some clinical trials are aimed at evaluating new drugs, while others optimize different therapeutic approaches including surgery, radiation therapy and combination of drugs already on the market. With any new drug or treatment, there can be risks as well as benefits: this is why clinical trials are closely monitored and usually conducted in hospitals.

• Imaging test: A procedure that creates pictures of internal body parts, tissues, or organs to make a diagnosis, plan treatment, check whether treatment is working, or observe a disease over time.
• Biopsy: Removal of a small amount of tissue for examination under a microscope. Other tests can suggest that cancer is present, but only a histological report derived from a biopsy can make a definite diagnosis.
• Invasive cancer: Cancer that has spread outside the layer of tissue in which it was first created and has the potential to grow into other tissues or parts of the body (infiltrating cancer)
• Laboratory test: A procedure that evaluates a sample of blood, urine, or other substance from the body in order to make a diagnosis, organize treatment, check if treatment is working, or observe a disease over time.
• In situ: In place; refers to cancer that has not spread to nearby tissue (non-invasive cancer).
• Benign: Refers to a tumor that is not cancerous. The tumor does not usually invade nearby tissue or spread to other parts of the body.
• Malignant: Refers to a tumor that is cancerous. It may invade nearby healthy tissue or spread to other parts of the body.
• Cancer: A group of more than 100 different diseases that can begin almost anywhere in the body; characterized by abnormal cell growth and the ability to invade nearby tissues.
• Lymph nodes: Tiny, bean-shaped organs that help fight infection. They are part of the lymphatic system
• Lymphatic system: A network of small vessels, ducts, and organs that carry fluid to and from the bloodstream and body tissues. Through the lymphatic system, cancer can spread to other parts of the body.
• Lymphoma: A cancer of the lymphatic system. Lymphoma begins when cells in the lymph system change and grow uncontrollably and may form a tumor.
• Leukemia: Blood cancer. Leukemia happens when normal white blood cells change and grow uncontrollably.
• Metastasis: The spread of cancer from the place where the cancer began to another part of the body; cancer cells can break away from the primary tumor and travel through the blood or the lymphatic system to the lymph nodes, brain, lungs, bones, liver, or other organs.
• Bone marrow: The soft, spongy tissue found in the center of large bones where blood cells are formed
• Tumor: A mass formed when normal cells begin to change and grow uncontrollably. A tumor can be benign (noncancerous) or malignant (cancerous, meaning it can spread to other parts of the body).
• Acute: Refers to symptoms that start and worsen quickly but do not last over a long period of time
• Pediatric Oncologist: Is the pediatrician that is specialized in diagnosis, therapeutic strategies and follow up of children with cancer.
• Prognosis: Chance of recovery; a prediction of the outcome of a disease.
• Predisposition: A tendency to develop a disease that can be triggered under certain conditions. For example, a genetic predisposition to cancer increases a person’s risk of developing cancer, it is not certain that the person will develop it.
• Primary cancer: Describes the original cancer
• Sarcoma: A cancer that develops in the tissues that support and connect the body, such as fat and muscle.
• Stage: A way of describing cancer, such as where it is located, whether or where it has spread, and whether it is affecting the functions of other organs in the body.
• Localized cancer: Cancer that is confined to the area where it started and has not spread to other parts of the body
• Chemotherapy: The use of drugs to kill cancer cells.
• Chronic: Refers to a disease or condition that persists, often slowly, over a long period of time

Pediatric cancer accounts for the second cause of death in children after accidents. As a parent, you need to be aware of the symptoms of childhood cancer. Early recognition of these signs/symptoms is very important since it is related to improved prognosis.
Main types of Childhood cancer: leukemias, central nervous tumors, lymphomas, neuroblastomas, Wilms’ tumors, bone and soft tissue sarcomas , retinoblastomas, etc

• Leukemia is a cancer of the bone marrow, the spongy centre of the bones that produces blood cells. It accounts for approximately 35% of all childhood cancers.
• Neuroblastoma is a disease in which malignant (cancer) cells form in nerve tissue of the adrenal gland, neck, chest or spinal cord. It accounts for 5%-7% of all childhood malignancies and usually occurs by the age of 5.
• Wilms’ tumor is a type of kidney cancer also known as nephroblastoma. It accounts for 6-7% of childhood cancer cases. It occurs in about 8 in 1 million children under the age of 14, but is more common in children under the age of 5. Some children have a genetic tendency to develop Willms’ tumour, usually because other family members have developed Wilms’ or there have been certain development problems from birth.
• Brain cancers account for more than 15-20% of childhood cancer cases. The symptoms depend on the location of the tumour. The two main types of brain tumours that affect children are gliomas and medulloblastomas. Gliomas develop from the supporting cells of the brain, which hold the nerve cells in place, and brainstem gliomas occur almost only in children. The average age of development is about 6 years old. Medulloblastoma originates in the cerebellum or posterior fossa, and may spread to other parts of the brain or into the spinal cord. Most medulloblastomas occur before the age of 10.
• Rhabdomyosarcoma is a fast-growing, highly-malignant soft-tissue sarcoma which develops in the muscle, mostly in the neck, head, bladder and testes. It accounts for 5-8% of childhood cancers. It usually affects children between the ages of 2 to 6 and 15 to 19.
• Lymphomas are malignant cell infiltrations of the lymphatic system located in the neck, armpit, and groin. Lymphomas are broadly classified as Hodgkin’s and non-Hodgkin’s. The two are distinguished by cell type. Hodgkin’s generally occurs in individuals between 15-40 years of age.
• Retinoblastoma is a type of eye cancer that occurs in the retina of one, or both eyes. It is the most common eye tumour in children. Retinoblastoma accounts for 3-4% of all childhood cancers. It usually occurs before the age of 5.

Radiotherapy (RT) is a type of of cancer treatment. Time of radiotherapy, fields and doses depend on characteristics related to disease type and individuals. All these features regarding RT are in details decribed in the corresponding treatment protocols. When a child is referred to a radiation oncologist for treatment, the RT Dpt team will provide the family with detailed information regarding RT procedures.

HeSPHO website aims to support patients and families through offering general information about radiotherapy in children. For any further queries in particular for RT, please contact the responsible local radiotherapy department team.