Childhood What parents must know Childhood Cancer is often curable 1 What is cancer Cancer is a group of diseases characterized by uncontrolled cell division leading to growth of abnormal tissue. Cancers arise from both genetic and environmental factors that lead to abnormal uncontrolled proliferation of cells. This process may start in the bone marrow and is known as Leukemia/blood cancer or may occur in specific sites/organs like lymph nodes, bone, liver, brain ,lungs, kidneys or eys 2 What are the common symptoms of cancer… Continued, unexplained weight loss Headaches, often with early morning vomiting, seizures, abnormal posturing Increased swelling/distension or persistent pain in abdomen, bones, joints, back, or legs Lump or mass, especially in the abdomen, neck, chest, pelvis, or armpits Development of excessive bruising, bleeding, or rash Constant infections A whitish color behind the pupil Nausea which persists or vomiting without nausea, jaundice, feeding difficulty Constant tiredness or noticeable paleness or respiratory difficulty Eye or vision changes which occur suddenly and persist Recurrent or persistent fevers of unknown origin 3 What are the various types of childhood cancers Leukemia Leukemia is a cancer of the bone marrow and tissues which produce the circulating blood cells. Leukemias are the most common childhood cancers. Types of leukemia include: Acute Lymphoblastic Leukemia (ALL): The most common childhood cancer. Almost 75% of children with leukemia have ALL, a cancer of the lymphoid cells in the bone marrow and the lymphoid organs of the body. They are involved in the body’s immune system. Acute Myelogenous Leukemia (AML): AML (also called acute myeloid leukemia, acute nonlymphatic leukemia or ANLL) is cancer of the myeloid blood cells which are produced in the bone marrow and which help fight bacterial infections 4 Cancers of the Central Nervous System (CNS) Brain tumors: There are many types of brain tumors; the most common are called gliomas. Lymphomas Lymphoma is a tumor of the lymph tissues, which are part of the immune system. Types of lymphoma include: Hodgkin lymphoma: affects lymph nodes nearer to the body’s surface, such as in the neck, armpit and groin area. Non-Hodgkin Lymphoma (NHL): affect lymph nodes found deep within the body. There are many types of lymphoma, include Burkitt's, anaplastic and lymphoblastic lymphoma. Sarcomas Sarcomas are cancerous tumors involving the bones and soft tissues. 5 Bone cancers Osteosarcoma: the most common type of bone sarcoma. These tumors often are located at the growing end of the long bones of the extremities, close to the joints. Ewings Sarcoma: a bone cancer that often appears in the middle of the bone. Commonly found in the thighs, hipbones, upper arms and ribs. Soft Tissue Sarcomas: Rhabdomyosarcoma: a soft tissue sarcoma that develops in muscles. Most often found in the head, neck, kidneys, bladder, arms and legs. Liver Cancers Liver cancer is an abnormal growth (tumor) in the liver. The most common forms of liver cancer in children are: Hepatoblastoma Hepatocellular carcinoma 6 Cancers of the Kidney Wilms tumor: also called nephroblastoma Clear Cell Sarcoma Others Neuroblastoma: is a cancer of the sympathetic nervous system which most often originates in the adrenal glands above the kidney. Retinoblastoma: is a malignant tumor of the retina (a thin membrane in the back of the eye). Germ Cell Tumors: Germ cell tumors appear most commonly in the testes, the ovaries, lower end of spine the middle of the brain, chest or abdomen. 7 What you would like to know about childhood cancers About 40,000 children childhood cancers/year are detected Acute Leukemia (Blood cancer) commonest of childhood malignancy is with the Leukemias and Lymphomas constitute nearly 50% of pediatric cancers followed by tumors of central nervous system, soft tissues, kidney, bone, eye, liver and germ cells. 8 Are there any identified risk factors for childhood cancers? Risk factors identified for pediatric malignancies are few as compared to adults. ALL Wilm’s tumor Ionizing radiation, birth weight>4 kg Genetic conditions-Down syndrome,LCH Chemotherapy - alkylating agents Genetic-Down syndrome, familial monosomy Ionizing radiation Genetic conditions Family history-monozygotic twins Immune deficiency Infections-EBV Congenital anomalies Hepatoblastoma Hemihypertrophy Retinoblastoma No known nonhereditary risk factors Ionizing radiation, chemotherapy ,genetic factors AML Brain cancer Hodgkin’s disease NHL Osteosarcoma 9 Did this happen because of something I did or passed on to my child? What are the chances that my other children will develop cancer? Not all cancers run in families. Hereditary component of some pediatric malignancies Hereditary component Adrenocortical tumors 50-60% Optic glioma 45% Retinoblastoma 40% Pheochomocytoma 25% Wilm’s tumor 3-5% CNS neoplasms <1-3% Leukemia 2.5-5% Does cancer spread to any other family member in any way? Cancer does not spread in any way. Touching /eating with a child with cancer does not cause cancer. This child cannot harm any one. 10 How is cancer diagnosed Doctors use many tests to diagnose cancer and find out if it has metastasized (spread). Some tests may also determine which treatments may be the most effective. For most types of cancer, a blood /bone marrow examination, biopsy or surgery to remove as much of the tumor as possible is the only way to make a definitive diagnosis of cancer. If a biopsy is not possible, the doctor may suggest other tests (mostly blood tests) that will help make a diagnosis. Imaging tests (ultrasound, CT scan, MRI, PET scan and others) may be used to diagnose a cancer, know the extent of spread and find out whether the cancer has metastasized. Your child’s doctor may consider these factors when choosing a diagnostic test: Age and medical condition Type of cancer suspected Severity of symptoms Previous test results 11 What are the various means to treat childhood cancers Treatment modalities The mainstay of treatment for most childhood cancers is chemotherapy, radiotherapy ,surgery and combinations of any or all of these .Bone marrow transplant is sometimes done when indicated. Chemotherapy is the term used for medications used for treatment of cancer. The may be given orally, intravenously, intramuscular, subcutaneous or intrathecally. Radiotherapy /Radiation therapy is the term used when radiation is used to treat cancer . Radiation therapy uses high-energy radiation to shrink tumors and kill cancer cells. About half of all cancer patients receive some type of radiation therapy sometime during the course of their treatment. The treatment for all cancers is different. You must discuss with your treating doctor whether your child will undergo chemotherapy alone or will also require radiotherapy and surgery 12 Summary of treatments for selected childhood cancers Cancer Treatment Acute lymphoblastic leukemia The main treatment is chemotherapy, in combination with steroids. Chemotherapy is administered in three phases: induction, consolidation and maintenance. Donor stem cell or bone marrow transplantation is considered for relapsed patients or those with resistant ALL. Radiotherapy is sometimes given to prevent or treat leukemia cells in the brain or as part of a stem cell transplant. Acute myeloid leukemia The main treatment is chemotherapy, which is administered in two phases: induction and consolidation. Donor stem cell or bone marrow transplantation is considered for relapsed patients or those with resistant AML. Hodgkin lymphoma The main treatment is chemotherapy alone or with radiotherapy. Non-Hodgkin lymphoma There are many types of NHL and the treatment depends on the type but the main treatments are chemotherapy, radiotherapy and biological therapies. Stem cell or bone marrow transplantation is considered for relapsed patients. Radiotherapy is sometimes given. Brain and CNS tumors The main treatment for most brain and CNS tumors is surgery (if feasible). If the entire tumor cannot be removed, chemotherapy and/or radiotherapy may be given. Radiotherapy is usually avoided in children under three years old due to the risk of damaging a still immature brain. 13 oma Neuroblastoma Localized tumors may be removed by surgery alone. Later stage or poor prognosis tumors are generally treated with chemotherapy (and sometimes radiotherapy) either before or after surgery. Stem cell transplantation may be considered. A new monoclonal antibody treatment for high risk neuroblastoma is currently being tested in clinical trials. Retinoblastoma Smaller tumors have treatment just to the eye itself with laser therapy, freezing therapy (cryotherapy) or heat therapy (thermotherapy) to destroy the tumour. Larger tumours may be treated with chemotherapy, radiotherapy or surgery to remove the eye (enucleation). A combination of treatments may be necessary. Nephroblastoma The main treatment is surgery, which usually involves removing all of the kidney (called a nephrectomy, though partial nephrectomies are performed if there are tumours in both kidneys). Chemotherapy and radiotherapy may be given before or after surgery. Osteosarcoma The main treatment is surgery to remove the bone tumour and some surrounding tissue, although sometimes a whole limb may need to be removed (amputation). Chemotherapy may be given before or after surgery. Radiotherapy is sometimes given. Rhabdomyosarcoma The main treatment is surgery. Chemotherapy and radiotherapy may be given before or after surgery. High-dose chemotherapy or total body irradiation is often accompanied by stem cell or bone marrow transplantation. Other new therapies, such as immunotherapy are being developed. 14 We realize many of you have come from distant places. Where will you stay. where will you arrange finances from. How will you look after the rest of your family? : these thoughts bother you. How do you handle this? Have faith in God Be positive You are not alone If you have decided to take treatment and are short of finances; Discuss with your doctor and social worker who will guide and help you with arranging funds for treatment and also accommodation It is better that once the treatment for your child has started and he is settled one parent/guardian may stay with child for treatment and the other may go home to work and look after rest of family. You may have to arrange for blood if the doctor as asked you . 15 How are we expected to look after our child if we decide to take treatment here. Besides the chemotherapy, radiotherapy or surgery is there any thing else that must be taken care of? You must understand the disease of your child properly from your doctor Always listen carefully to what your doctor has to say regarding treatment and care Arrange for stay, finances for chemotherapy and place to stay The child must be protected from infection. Your doctor will give you instructions regarding care and p (4 C’s) Clean hands , Clean water, Clean food and Clean environment are most important Infection precautions: Remind kids to wash their hands before eating, after using the bathroom, and after touching animals. 16 Friends or family members with contagious illnesses (such as a cold, the flu, or chickenpox) should refrain from visiting. Try to avoid crowds and children who have received certain vaccines, such as chickenpox or oral polio — these are live-virus vaccines and can spread disease to kids with low blood cell counts. Certain vaccines are not to be given to your child and siblings, please understand from your doctor and ask your doctor to write clear instructions for you regarding the dos and don’ts about vaccination And to prevent food-borne infection, your child shouldn't eat raw fish, seafood, meat, raw unwashed vegetables/fruits, uncooked eggs. Home made clean and nutritious food is best for him. Your doctor may give some medications to be taken on a regular basis, please give those to your child If your child develops fever particularly when the (white blood cell count is low), cough, vomiting, loose motions, bleeding from any site, breathing difficulty etc always consult your doctor immediately. You may sometimes not realize the severity of illness and sometimes the condition of the child worsens very fast; therefore you must always consult your 17 treating doctor. A senior resident is always posted in the Pediatric casualty and may be consulted . What are the side effects of cancer treatment Cancer treatment with chemotherapy and radiotherapy is associated with side effects which are often handled if one knows about them . Chemotherapy side effects are different for each child. The type of anticancer drug used, the dosage, and a child's general health affect the risk of developing unpleasant side effects. Most side effects are temporary — as the body's normal cells recover, the side effects gradually go away. Common acute side effects of chemotherapy include allergic reactions, fatigue, pain , discomfort, nausea, vomiting, decreased appetite, change of taste, ulcers in throat, mouth and gums, jaundice Lowering of blood counts ( red blood cells,white blood cells/platelets) leading to anemia, infections and bleeding is often seen and needs immediate attention.If fever is also present,you should immediately consult your doctor. Some chemotherapy drugs can irritate or damage the bladder or kidneys . Urinary disturbances and decreased urine output are sometimes seen. The doctor may ask for a blood or urine sample before beginning and during chemotherapy to evaluate kidney function. 18 Giving your child plenty of fluids to drink will ensure good urine flow and help prevent problems in the urinary tract. Increased weight gain, coagulation disturbances, cardiac dysfunction, renal and hepatic impairment, seizures, drowsiness, altered sensorium , electrolyte abnormalities etc may occur. Sometimes the chemotherapy may leak out of the vein into adjoining skin and cause skin irritation, swelling ,ulceration, necrosis and pain. You should apply ice locally and should immediately consult your doctor. Radiation therapy can cause both early and late side effects. Acute side effects occur during treatment, and chronic side effects occur months or even years after treatment ends. The side effects that develop depend on the area of the body being treated, the dose given per day, the total dose given, the patient’s general medical condition, and other treatments given at the same time. Acute radiation side effects are caused by damage to rapidly dividing normal cells in the area being treated. These effects include skin irritation or damage at regions exposed to the radiation beams. Examples include damage to the salivary glands or hair loss when the head or neck area is treated, or urinary problems when the lower abdomen is treated. Fatigue is a common side effect of radiation therapy regardless of which part of the body is 19 treated. Nausea with or without vomiting is common when the abdomen is treated and occurs sometimes when the brain is treated. Medications are available to help prevent or treat nausea and vomiting . Other side effects include skin damage/changes (red, sensitive,swelling or texture change.)The skin may be more sensitive to sun exposure for months after treatment. There may also be some permanent changes to the color and elasticity of the skin. Hair Loss,Sore Mouth and Tooth Decay, Gastrointestinal Problems (such as loss appetite, diarrhea, nausea, and vomiting) of Thrombocytopenia and low white cell counts are other side effects of radiation therapy Late side effects of radiation therapy may or may not occur. Depending on the area of the body treated, late side effects can include Fibrosis (the replacement of normal tissue with scar tissue, leading to restricted movement of the affected area). Damage to the bowels, causing diarrhea and bleeding Memory loss Infertility (inability to have a child). Rarely, a second cancer caused by radiation exposure. 20 When suggesting radiation therapy as part of a patient’s cancer treatment, the radiation oncologist will carefully weigh the known risks of treatment against the potential benefits for each patient including relief of symptoms, shrinking a tumor, or potential cure. How is cancer therapy given .. Sometimes a child may need to be admitted for a few days for chemotherapy. If the child is well then injections are given mostly on a day care basis . Oral medications are taken at home. Radiotherapy department. is given in the Radiotherapy Long-Term Side Effects Chemotherapy can cause long-term side effects (sometimes called late effects), depending on the type and dose of chemotherapy and whether it was combined with radiation. These effects may involve any organ, including the heart, lungs, brain, kidneys, liver, thyroid gland, and reproductive organs. Some types of chemotherapy drugs may also increase the risk of cancer later in life. Receiving chemo during childhood also may place some kids at risk for delayed growth and cognitive development, depending on the child's age, the type of drug used, the dosage, and whether chemotherapy was used in addition to radiation therapy. 21 You should pay attention to your child’s nutrition Nutrition is an important part of the health of all children. It is especially important for children getting cancer treatment. Cancer and its treatments may affect a child's appetite, tolerance to foods, and their body's ability to use nutrients. Eating the right kinds of foods before, during, and after treatment can help a child feel better and stay stronger. Children who get good nutrition while they are being treated for cancer: Tolerate treatment and treatment side effects better Are better able to stay on schedule for treatment Heal and recover faster Have less risk of infection during treatment Have better strength and energy Keep up their weight and their body's store of nutrients Are better able to keep up normal growth and development Feel better and have a better quality of life -- they are less irritable, sleep better, and work better with the health care team Each child with cancer has their own nutrition needs. If your child has cancer, talk with your doctor about your child's diet. Sometimes your child does not eat in spite of best of your efforts and your doctor is concerned. The doctor may sometimes advice you to start tube feeding which is a means of providing nutrition to your child via a tube that is inserted into your stomach via the nose. 22 Working with Cancer patients & their families You as parents must know about the following The disease is discussed in detail; the prognosis , duration of treatment, side effects of chemotherapy The financial issues are discussed. If the family is unable to take treatment because of financial constraints then finances are arranged through NGOs or government organizations The requirement of blood donation is discussed with the family Places available for their stay in Delhi should be told to you Importance of hygiene and nutritional care has been discussed Chemotherapy protocols should be discussed with the parents Any risk factor of disease if present should have been discussed Children should wear face masks when moving to crowded places. If the parents also suffer from upper respiratory infection they should try to stay away from the child /wear face masks The parents should be told of the alarming symptoms and they should be advised to bring the child to the casualty in any eventuality. 23 Are there any avenues of financial support for cancer patients? It is expected that the parents should arrange finances to initiate chemotherapy for their children. Meanwhile finances/chemotherapy arranged from the following sources may be 1. The AIIMS Hospital poor fund 2. The National Illness Assistance (Rashtriya Arogya Nidhi) 3. The Prime Minister’s relief fund 4. State Illness Arogya Nidhi) 5. Aiimsonian poor fund 6. NGO’s – CANKIDS, Cancer Patient Aid Association 7. ESI Fund Assistance Fund fund (Rajya The medical social worker in the department of Pediatrics facilitates the process. you may find the social worker in the children OPD from 9.00 am - 5.00 pm The estimate of treatment is provided by the treating doctor 24 Places of stay in Delhi for cancer patients & their families 1. Rajgariya Dharamshala (Near AIIMS) 2. Surekha Vishram sadan (Near AIIMS) 3. Tirathram dharamshala (Near IIT Gate) 4. Home away from Home (Kotla Mubarkpur) Forms for estimates of treatment and various dharamshalas are available with the social worker of the department of Pediatrics For any emergencies rush your child to the Pediatric emergency. The child will be attended to immediately. Routine consultations are done in Pediatric Oncology clinic, Monday Room no 07 & 14 ; 9.00 am in children OPD Children OPD Room no. 07 Wednesday & Saturday; 9.00am Patients may contact us at c3sambhav@gmail.com We will get back to you immediately 25 Day Care services Medical consultations Intravenous fluids administration Antibiotic therapy Blood testing Chemotherapy Blood component therapy Bone marrow examination Cerebrospinal fluid (CSF) examination Observation after procedures You may be required to get a short admission made for day care treatment 26 Cancer treatment is a team work 27 Important Room Number S. No. Name of Investigation 1 Immunization Place of investigation Children's OPD 2 X-Ray Children's OPD 15-A 3 Investigation reports Children's OPD 1 5 Ultrasound Main OPD 17 6 Blood Test Main OPD 27 7 Urine and Stool Test Main OPD 28 8 Radiograph Main OPD 74 9 Bairum Meal Main OPD, Nuclear Medicine Main OPD, nuclear medicine Main OPD 41 10 CT Scan 11 ECG 12 PAC 13 T-3, T-4, TSH 14 Cultures 15 Pediatric Office 16 PFT 17 EEG Main OPD, 5th floor Teaching block, 2nd floor Teaching block, 2nd floor Teaching block, 3rd floor Teaching block, 3rd floor Children's OPD Room No. 2 8 (Report hand to hand) 32 5054 2090 Microbiology 3058 3102 12 28 18 MRI MR department Near CN Centre 19 Genetic Lab 4 20 PET 21 Biopsy 1st floor, Old OT block Main OPD, Nuclear medicine 1st floor Tecahing block 22 FNAC 1st floor, teaching block 23 Bone Marrow Biopsy 24 IRCH 8 26 Bone Marrow/Flow Cytometry, P/S, Hemogram/Biochemistry RT 1st floor, teaching block IRCH 1078 (Sample),1085 (Report) 1069 (Sample),1085 (Report) 1078 (Sample), 1085 (Inquiry) 8 41- 27 LFT/RFT 28 USG guided biopsy IRCH, Ground Floor IRCH/ Main OPD Main OPD 29 CT guided Main OPD 8 30 ECHO CN centre 62 31 ENT 4111/4123 32 PEDS Surgery OPD 33 BCRABL 4th Floor, main OPD 3rd floor, main OPD 1st floor, IRCH 25 4 8 & 27 17 156 29 Childhood cancer is often curable: IF detected in time and treated properly Yes! You may become a cancer survivor Prepared by Division of Pediatric Oncology. Department of Pediatrics All India Institute of Medical Sciences, Ansari Nagar, New Delhi 30