(you may want to use the Glossary of Terms as a reference)
The earliest known evidence of a malignant tumor was found in 1932 in Africa. The fossil remains of Homo erectus showed features of Burkitt lymphoma. Today, cancer is a potentially life-threatening concern worldwide. The number of children diagnosed with cancer has not changed in the past 10 years but, fortunately the ability to cure these children has increased and continues to increase every year. Because of this, long term emotional healing is vital in order for the patient to fully recover.
Camp Hobé is a highly rewarding experience for both volunteers and campers alike. The ability to create a world for the campers to be a kid again and to forget the pain and sadness they have felt is amazing. Volunteering for Camp Hobé is an incredible experience you will never forget. As a camp volunteer, you must be able to identify warning signs of a camper in need of medical care. In addition, knowing what the campers have been through is essential to build a foundation of understanding. This understanding will help you to connect with the kids on a deeper level.
The following pages will help you build a background knowledge of common childhood cancers and treatments. There is also information on the physical and emotional effects of cancer and its treatment that may be warning signs of potential problems.
«While you are reading, look for this « » that highlights “Terms to Know”. This information will help you better understand common cancer terms.»
Types of Childhood Cancer
The types of cancer commonly seen in children are discussed on the following pages. Children are usually diagnosed with different cancers than adults. Leukemias, lymphomas, and brain tumors account for most cancers diagnosed in children and teens. The remaining childhood cancers are solid tumors affecting other parts of the body, such as bone.
The Leukemias
The leukemias are cancers that involve the cells within the blood. The most common problematic cell group is the white blood cells. White blood cells are formed from stem cells produced in the bone marrow (the spongy tissue found inside the bone). There are five types of white blood cells. These originate from a single unique stem cell that then differentiates into mature cells with unique immunologic functions. As these cells multiply and mature, they leave the bone marrow and enter the bloodstream as part of the immune system.
«White Blood Cell (WBC): Cells of the immune system that fight disease and infection.»
Sometimes as a child grows, abnormalities form in their bone marrow, resulting in an overproduction of undeveloped white blood cells. This probably occurs because of unplanned mutations in the stem cells of the bone marrow. In 75% of childhood leukemias, these abnormalities occur in the largest group of white blood cells, the lymphocytes. The rest of cases (about 25%) are due to defects in other types of white blood cells and fall under other classes.
Acute Lymphocytic Leukemia (ALL)
«Lymphocyte: these are a white blood cell that helps produce antibodies and stimulate the body’s defenses to act against things like bacteria and viruses.»
In ALL, the production of mature lymphocytes goes haywire. Normally, an immature cell forms from a stem cell, then matures into a normal, active white blood cell. In ALL, the production of immature cells goes up and the immature cells do not mature. The abundance of immature cells crowd out the normally functioning cells, leading to lower numbers of normal white blood cells, red blood cells, and platelets. This type of cancer accounts for most childhood cancers and is more common in boys then in girls. It is seen most frequently in late infancy, the preschool years, and around puberty.
Acute Myeloid Leukemia (AML)
«Monocyte & Myelocyte: Other types of white blood cells that help identify antigens and destroy bacteria and other foreign material in the body. These cells include neutrophils, monocytes, eosinophils, and basophils.»
Acute Myeloid Leukemia includes many groups of cancers that do not involve the lymphocytes. Other types of white blood cells are involved, including monocytes and myelocytes. This group of leukemias even includes (Acute Erythroblastic Leukemia (AEL), which is a cancer involving the overproduction of erythrocytes (red blood cells). This group of leukemias makes up about 25 % of the acute leukemias of childhood and adolescence.
Acute vs.Chronic Leukemias
Classifying leukemia as acute and chronic is important to the diagnosis. Acute leukemias have a shorter time course from developing clinical signs until diagnosis – usually weeks to months. Acute leukemias are the most common type, and have a higher cure rate than chronic leukemias.
Chronic leukemias represent less than 2% of all childhood leukemias. Rather than an abundance of immature white blood cells, the marrow is crowded by more mature cells. These disorders have a longer time course for developing clinical signs – often months or years. They may often be successfully treated for years with a single oral pill, instead of with chemotherapy needed to treat the acute leukemias.
The Lymphomas
The lymphatic system is made up balls of tissue, or lymph nodes, located in different parts of the body. The lymph nodes are connected by tubes to the lymphatic system. Their job is to filter waste from body fluids. The lymphatic system destroys foreign matter, while lymphocytes within the system produce antibodies to fight infection. Since cancerous cells are seen as foreign by our body, they often make their way into the lymphatic system to be identified and destroyed. Unfortunately, some cancer cells get stuck and start to multiply within the lymph node, forming a malignancy. Lymph nodes are mainly found in the armpits, groin, neck, and abdomen.
«Malignancy: Cancerous growth of abnormal cells that can spread to surrounding normal tissues.»
Lymphomas are the second most common malignancy in children. There are two broad types of lymphoma, Hodgkin lymphoma and non-Hodgkin lymphoma.
These two types of lymphomas are very different and require different treatments. Hodgkin lymphoma was named after the doctor who discovered the disease in 1832. Hodgkin lymphoma is more common in adults and adolescents while Non-Hodgkin lymphoma is more common in children. NHL is divided into 3 major classes of lymphomas. When viewed under the microscope, the size, shape, and patterns of the cancer cell are used to classify the type of NHL.
Non-Hodgkin’s Lymphoma (NHL)
This lymphoma is more common in children than in adults. According to the American Cancer Society, about 500 new cases of NHL were diagnosed in 2009 in children younger than 15 years old. This form of lymphoma is 2 to 3 times more common in boys than in girls, although the reason for this difference is not known. There are three main types of NHL – Burkitt lymphoma, lymphoblastic lymphoma, and large cell lymphoma.
«Thymus: Organ in the body where lymphocytes get their capabilities to fight infection and disease.»
The diagnosis of these lymphomas is based on laboratory tests that look at cell characteristics under the microscope, along with tissue samples taken from cancerous sites. Burkitt lymphoma makes up about half of all cases of NHL in children. This type grows very quickly and can spread rapidly before the patient is diagnosed. About one-third of all lymphomas in children are lymphoblastic lymphomas that start in the thymus, or the lymph nodes. These can then spread to bone marrow and the central nervous system.The cancer cells in this type of lymphoma are the same as those seen in ALL. If enough of the bone marrow is cancerous, the child is treated for ALL. Large cell lymphoma does not grow as rapidly as other types of NHL. Large cell lymphoma starts in the mature forms of lymphocytes. It is not as likely to spread to the central nervous system as the other two types.
Hodgkin Disease (Hodgkin Lymphoma)
In 2009, 8,510 new cases of Hodgkin disease were diagnosed. This disease occurs in two main age groups – patients between 15 and 40 years of age and patients older than 55 years of age. Hodgkin disease is less common in children than in adults. Half of the patients are under the age of 25 years at the time of diagnosis. In children, Hodgkin disease is most common in boys before puberty and in girls during their teenage years.
This type of lymphoma can affect any of the lymph nodes and can spread easily from lymph node to lymph node. The malignant cell, known as the Reed-Sternberg cell, is of lymphocyte origin, and may be identified by its very characteristic microscopic appearance.
Brain and Central Nervous System Tumors
Tumors are simply abnormal cells that have grown out of control until they form a mass of tissue. Tumors can occur in many areas in the body and can metastasize (or spread) to other areas if left untreated. In children, tumors of the brain and spinal cord are the most common type of primary solid tumors. Treating these tumors is hard because many people are diagnosed late in the disease because the symptoms are hard to distinguish from more common illnesses. Recent improvements in neurosurgical techniques and radiation therapy have increased the likelihood of survival. While survival rates have increased, the side effects that come from a combination of surgery, chemotherapy, and radiation therapy can be damaging to normal brain tissue. Consequences of these therapies can lead to altered hearing and vision, hormonal abnormalities, learning disabilities, and developmental delays.
«Metastasize: When a cancer spreads from the original location to other parts of the body, such as surrounding tissue or more distant areas (brain, liver). The other tissue then develops cancer cells similar to those of the primary tumor.»
According to the American Cancer Society, brain and central nervous system tumors accounted for almost 20% of all childhood cancers in 2009. Of 3,800 new cases, one-fourth of them were benign. The number of new cases has not changed over time. These tumors tend to be more common in boys than girls. Depending on the location of the tumor, many children survive for at least 5 years after diagnosis without treatment.
Benign vs. Malignant
There are two types of tumors, benign and malignant. A benign tumor is not truly malignant and is generally not harmful if found in other parts of the body. When found in the brain however, benign tumors are not easily removed, and have a tendency to grow back if the tumor is not completely removed. These tumors cause most of their problems when they press upon vital parts of the brain. Malignant tumors generally exhibit more rapid growth and are able to spread, usually to other parts of the central nervous system including the spinal cord.
When a tumor is found within the brain or central nervous system, it is usually removed regardless of whether it is benign or malignant. Both types of brain tumors can cause damage to one of the most important areas of our bodies.
Primary vs. Metastatic
There is a difference between primary brain tumors and metastatic brain tumors. Primary brain tumors originate from an abnormal malignant cell within the central nervous system. Metastatic tumors are abnormal cells that have originated somewhere else within the body and then spread to invade the brain and central nervous system.
Non-brain Central Nervous System Tumors
While brain tumors are the main cause of central nervous system cancers, other areas of the central nervous system can also develop cancer, such as the spinal cord. Tumors within the spinal cord are usually rare in children, occurring in less then 5% of all central nervous system tumors. When these tumors are found, it usually means that a primary tumor has metastasized from another part of the central nervous system.
Sarcomas
The word sarcoma stems from the Latin words sarco, meaning connective or soft tissue, and oma, meaning tumor. Sarcomas are a broad classification of cancers that occur most often in tissues like bone (called osteosarcoma), and muscle (called myosarcoma). Sarcomas as a whole constitute about 10% of all childhood cancers. The most common types of sarcomas in children, in order of frequency, are the rhabdomyosarcoma (skeletal muscle), osteosarcoma (bone), and Ewing sarcoma (bone and soft tissue).
Bone and connective tissue tumors account for only about 1% of all human cancers, but in the 10-20 year old age group; they are the 4th most common cancers. Two-thirds of all sarcoma cases are seen in patients under the age of 20, probably due to the developing tissues.
Rhabdomyosarcoma
The word rhabdomyo means rod-like muscle. This type of soft tissue sarcoma affects the skeletal muscle tissues of the body. This is the most common type of soft tissue sarcoma to affect children. There are 2 main types of rhabdomyosarcoma, embryonal and alveolar.
«Skeletal Muscle: 1 of 3 types of muscles in the body. These are the muscles that we control and use to move every day.»
Embryonal rhabdomyosarcoma typically arises in younger children (less than 6 years), is often located around the head and neck or genitourinary system, and has a relatively high cure rate utilizing surgery, chemotherapy, and in some cases radiation therapy. These constitute about half of all rhabdomyosarcoma subtypes.
Alveolar rhabdomyosarcoma usually affects adolescents, arises in the extremities (arm and legs), and is more aggressive than the embryonal subtype. Alveolar subtypes are seen in about 25% of patients with rhabdomyosarcoma.
Osteosarcoma
Osteosarcoma is the most common bone tumor seen in children. Although less common in younger children, it is the third most common tumor of adolescents, behind only the leukemias and lymphomas. Osteosarcomas tend to be diagnosed during periods of rapid growth, leading many to believe that normal growth hormones may cause growth of a malignant bone cell. Most osteosarcomas are found in the long bones, such as the femur (thigh), tibia (shin), and humerus (upper arm).
Osteosarcomas are treated with a combination of chemotherapy and surgery. Because the cure rate is generally high if the cancer has not spread, surgeons make every attempt to remove the tumor in a way that preserves the function of the involved limb. “Limb-sparing” surgery has led to many teens maintaining function with artificial joints or other devices, rather than amputation.
Ewing Sarcoma
Ewing Sarcoma is named for James Ewing, a surgeon who first described this bone tumor in the 1920’s. This is the second most common bone tumor. While it affects the same adolescent population as osteosarcoma, a third of these tumors occur in children less than 10 years.
Ewing sarcoma has a greater tendency to affect the “flat bones” of the body: the pelvis, skull, and the vertebrae are common sites of this tumor. Ewing sarcoma may arise outside of the bone in 5% of patients, known as “extraosseous” Ewing sarcoma. Both the bone and extraosseous versions may be identified via molecular techniques that identify a key rearrangement in the tumor chromosomes. A key distinction in the treatment of Ewing sarcoma is that radiation is often used in combination with chemotherapy and surgery.
Neuroblastoma
Neuroblastoma is the most common solid tumor occurring outside of the brain, accounting for nearly 8% of all tumors. The median age at diagnosis is 22 months, with very few patients diagnosed over 10 years of age. This tumor develops from immature nervous system tissue. Tumors usually originate near the kidney, in the adrenal gland, but may be found anywhere along the spinal column. The tumor is unique in that it has a very wide range of clinical impact.
On one end of the spectrum, the tumor may be present in the fetal period, identified on pre-natal ultrasound. Tumors identified in the first few months of life usually resolve without treatment. Tumors identified in the first year and a half of life often respond well to surgery, along with several short courses of chemotherapy, and perhaps radiation.
However, tumors identified later in life are often more aggressive, have spread at the time of diagnosis, and are resistant to standard therapy. In these cases, treatment may involve high dose chemotherapy, bone marrow transplant, and special antibodies specific to the tumor tissue.
Wilms Tumor
Like neuroblastoma, Wilms tumor typically develops early in life, originating from immature, developing renal (kidney) tissue. Wilms tumor is named after the doctor who first wrote about the disease in 1899.
Wilms tumor is usually only found in one kidney and may be quite large when diagnosed. Childen are usually diagnosed by their parents during a bath or diaper change, or by their doctor during a well child examination. Children are usually diagnosed between the ages of 1 and 5 years. About 500 new cases are found each year in the United States and this tumor accounts for about 5% of all childhood cancers. Wilms tumor is more common in girls than in boys and is rarely seen in children over 6 years of age. Although this was the first tumor to have a very high success rate with surgery alone, chemotherapy and radiation therapy have added to increase these rates, even for children whose tumor has spread outside of the kidney.
Treatment
Treatment for cancer dates back to 3,000 BC, when herbs and roots were used to treat cancers of the uterus and stomach. Now, after centuries of research, children with cancer have very positive outlooks. From 1996 to 2006, long-term cancer survival increased almost 20% in adults, and increased even more in children. The reason for the increase is a combination of better detection, improved understanding of cancer’s molecular basis, and development of new cancer therapies.
The goal of treatment is to remove or destroy the abnormal cells by surgery, radiation, chemotherapy, or a combination of these methods. The three main treatments are discussed below.
Surgery
This is the oldest and most widely used treatment for solid tumors. Leukemias are considered a liquid cancer affecting the blood, and are not treated using surgery. The more typical solid tumors may be treated by surgery, either at the time of diagnosis (through entire removal of the tumor), or after a course of chemotherapy or radiation therapy, which is intended to shrink the tumor and allow the tumor to be removed with less damage to surrounding normal structures. It is generally accepted that smaller tumors are more easily removed with surgery. However, innovative surgical techniques are being used more often to help remove larger tumors.
Radiation
This form of treatment uses beams of radiation directed specifically at the tumor’s location. Over the course of treatment, the DNA within the cell is damaged, causing the cell to lose its ability to replicate. On some level, all tissues and tumors are vulnerable to radiation.
The amount and timing of the treatments are critical. A radiation oncologist is a doctor who plans the timing and length, site, aim, and dose of the radiation treatments. It takes the perfect amount of radiation to control the tumor without causing future problems. Therapy is usually given 5 days weekly for several weeks until the entire dose is given. The number of treatments may vary from as few as 6 to 10 doses for Wilms tumor, to as many as 30 for some sarcomas.
Radiation therapy often carries a negative stereotype, but this is ill deserved. As with all potentially toxic therapies, the benefit to the patient is weighed with the potential side effects. The actual delivery of radiation therapy causes relatively few short-term side effects, such as skin changes (sunburn), nausea (radiation to the brain or belly), and ulceration of the mouth (radiation to the oral cavity). Patients are not usually hospitalized, although small children may be sedated to keep them still. The actual therapy takes just minutes per day. Important long-term side effects may include arresting normal growth in bones and soft tissues, development of secondary tumors, and reduced fertility; these effects usually only occur in the treated areas.
Radiation therapy has increased the survival rates of children enormously. New and developing technology is always improving this treatment method, primarily by helping focus or concentrate the radiation on the tumor, and eliminating exposure of normal tissue.
Chemotherapy
This treatment, also known as “chemo” refers to the administration of drugs to treat tumors. This form of treatment has been highly effective since its original use in the 1940’s for patients with advanced lymphomas and leukemia. Chemotherapy use has expanded greatly since then, and is now a vital component of many brain tumor and sarcoma treatment protocols.
Today, more than 100 chemotherapy drugs are used to treat cancer cells. They can be used singly or as a mixture, depending on the specific cancer. The drugs are usually given over a series of daily visits followed by a few days or weeks of rest. Each series of doses is called a course or cycle. A team of specialists monitors the children during the course to monitor the treatment. The side effects of chemotherapy are discussed in a later section.
Most standard chemotherapy works by killing rapidly growing cells in the body. Typically, the most rapidly growing cells are the cancer cells, and these are preferentially destroyed. Chemotherapy may work directly on the primary tumor, such as the bone marrow in leukemia, or the more typical solid tumor. Reducing the size of a solid tumor may allow for easier removal through surgery. The chemotherapy also has an effect on cells that may have broken off from the primary tumor, but are not yet visible on standard body scans. This systemic effect is responsible for the prevention of metastasis, and for the treatment of known metastatic disease at diagnosis.
Remission vs. Relapse
These two words are very important when discussing cancer. Remission is the term used when no detectable evidence of cancer can be found. Relapse refers to the return of the cancer after a period of remission. If a relapse happens, the child once again undergoes treatment in order to return to a state of remission. The length of time in which a patient is in remission before being declared “cured” varies by the tumor type. Patients with Burkitt lymphoma are typically declared cured after 12 to 15 months of remission, while patients with sarcomas have been known to relapse after 5 to 10 years of remission.
The Whole Picture
Care of these children goes beyond chemotherapy, radiation, and surgery. Pain management and psychological well being must also be a priority. The child is not just a patient with a cancer; they are foremost a child. They still want to be a child, have fun, make friends, imagine, and create. This is what Camp Hobé does for children. You as a volunteer are making a big difference. The ability to cope with what is happening in their bodies is just as much psychological as it is biological.
Effects of Treatment
The adverse effects of treatment on children that are going through chemotherapy or radiation therapy can be bittersweet. On one hand, the child is being cured of their cancer; on the other hand, the side effects are sometimes severe.
Both the disease and its treatment can produce physical changes such as nausea, vomiting, and fatigue. This can decrease the patient’s energy levels and their ability to participate in school or other activities. Other physical changes range from facial distortion to scarring, depending on the specific treatment the child receives. The section below lists side effects seen with each treatment that can commonly be seen while at camp.
Radiation
Early Side Effects
- Hair loss (only the treated area)
- Nausea, vomiting, or reduced appetite
- Diarrhea or constipation
- Fatigue with dizziness and irritability
- Headache or vision problems
- Sore throat, dry mouth, or mouth sores
- Sensitivity to sunlight, sunburning easily
Late Side Effects
- Change in growth patterns (such as short stature, if pituitary gland is irradiated)
- Sterility or infertility if the pelvis or the gonads are irradiated
- Bone fragility
- Learning disabilities or developmental delays if the brain is irradiated
Chemotherapy
Early Side Effects
- Hair loss (over whole body)
- Diarrhea or constipation
- Nausea, vomiting, reduced appetite, or change in taste
- Red, itchy skin
- Sensitivity to sunlight
Late Side Effects
- Change in growth patterns
- Sterility or infertility
- Cancer later in life (called secondary cancers)
For many children, hair loss can be one the hardest side effects of treatment. Many children and teens feel embarrassed about this and have a hard time participating in social activities. This is just another reason why Camp Hobé is needed. The patient receives emotional support from other kids that are having the same problems.
Surgery
The main adverse effects of surgery include physical and emotional scarring. Depending on the site and extent of the cancerous growth, some parts of the body may need to be amputated (or removed), although newer surgical techniques are allowing for greater preservation of function. Surgery can cause lasting emotional effects that must be considered. In addition, functioning without the area that was removed can be hard for children to accept and adapt to. This is why a team of medical professionals is available for both physical and emotional support.
Special handling
As a volunteer at camp, you MUST be aware of your campers’ physical and emotional condition at all times. Even minor changes can mean camper needs rest, food, liquids, or medical attention. Children that have gone through cancer treatment are more prone to infection, may sunburn more easily, and often experience times of tiredness and irritableness. Our goal as volunteers is to help the campers have the best experience they can while keeping in mind their special medical needs.
The left-hand column lists adverse effects of cancer treatment that the children could experience. The right-hand column lists what you should do if you see these side effects while at camp.
| Symptom or Problem | What You Should Do |
| Sunburning more easily | Have the camper put on sunscreen often. If you didn’t see the camper put on the sunscreen, assume they did not do it. |
| Central line infections – the camper might have a fever, headache, or just act tired; or you might see red marks or streaks on the skin where the line enters the body | Prevention – Central lines should always be cared for by the medical staff. Always have the camper’s central line checked before and after they go swimming.
Care – If the camper develops any symptoms of infection, take them to the medical staff right away. |
| Communicable diseases (eg, flu, cold) – the camper might complain of fever, chills, nausea, vomiting, or diarrhea; or they may just act tired. | If a camper has any of these symptoms, take them to the medical staff to be checked. Flu-like symptoms might include fever, chills, nausea, or vomiting. |
| Scrapes or cuts, that are bleeding or look infected (oozing pus, red streaks on the skin, swollen area) | Have the medical staff check it, even if it is a small scrape or cut. Cancer patients may get infections more easily or bleed more easily than other children. |
| Nausea | Have the medical staff check the camper right away. |
| Dizziness | Have the medical staff check the camper right away. |
| Fatigue | Have the medical staff check the camper right away. |
| Tiredness, camper not wanting to participate | Have the camper drink some water, and take a time-out to rest for a few minutes. If the camper still feels unwell, have them checked by the medical staff. |
Do not ever hesitate to have a camper checked out by the medical staff. That is why the medical staff are there. And the sooner the camper is checked, the sooner they can get back to the fun.
Prepared by: Dayne Bonzo, Camp Volunteer; Phillip Barnette, MD, Medical Director; and Chris Beckwith, PharmD, Camp Director / Drug Information Specialist.
© May 8, 2010, Camp Hobé Inc. Salt Lake City, UT.