Germ Cell Tumors Patient & Family Handbook

A Handbook for Patients and Families • Oncology Series Germ Cell Tumors

Germ Cell Tumors

A Handbook for Patients and Families

Edited by Elizabeth Thomson Litterini, MS RN CPNP®

Content Reviewers Steering Council

Parent and Patient Reviewers Yesica Santos

With Contributions by Deborah Bond Berk, LICSW

This handbook is published by the Association of Pediatric Hematology/Oncology Nurses (APHON) for educational purposes only. The material has been developed by sources believed to be reliable. The material is not intended to represent the only acceptable or safe treatment of germ cell tumors. Under certain circumstances or conditions, additional or different treatment may be required. As new research and clinical experience expand the sources of information available concerning the treatment of germ cell tumors, adjustments in treatment and drug therapy may be required. APHON makes no warranty, guarantee, or other representation, express or implied, concerning the validity or sufficiency of the treatments or related information contained in this handbook. APHON Handbooks for Patients and Families have been developed by healthcare providers who have been educated and currently practice primarily in the United States. APHON acknowledges that treatments and practices presented in this handbook, which are commonly or widely recognized as standard in the United States, may differ from those in other countries. APHON encourages users to defer to their governing body’s preferred treatment and practice methods and healthcare providers’ advice. APHON provides this handbook for educational use. Users may copy and distribute this material in unadapted form only, for noncommercial use, and with attribution given to APHON.

WHAT IS A GERM CELL TUMOR? A germ cell tumor is an abnormal growth that comes from the cells of a developing ovary or testicle. Germ cell tumors can be malignant (cancerous) or benign (noncancerous) and are made up of cells that make sperm and eggs (germ cells). Germ cells make up part of the reproductive system and start growing before the baby is born. Germ cells travel toward the site where the child’s testicles or ovaries will grow, such as into the scrotal sac as testicular cells and into the pelvis as ovarian cells. Most often, germ cell tumors develop in the ovary or testicle, which are also called the gonads. The most common spot for germ cell tumors to occur outside of the ovary or testicle is in the sacrococcygeal region (pelvic area and tailbone), brain, abdomen (belly), neck, or chest. When germ cell tumors form outside of the gonads, they are called extragonadal. WHAT ARE SOME OF THE SYMPTOMS OF A GERM CELL TUMOR? The symptoms of a germ cell tumor depend upon its size and location. For example, if the tumor is found in the abdomen, the child’s belly may appear bloated. If the tumor is in the testicle, the scrotum may be swollen, and the testicle may be enlarged or uneven in size. If the tumor is in the ovary, there may be pain, soreness, and fullness of the belly. A tumor in the pelvic area may cause constipation (irregularity or difficulty passing stool), trouble with urination (peeing), or fullness of the belly. If the tumor is in the sacrococcygeal area, there may be a problem with urination, and constipation and leg weakness may occur. A tumor in the chest may cause coughing, trouble breathing, or chest pain. A tumor in the brain may cause changes in eyesight or speech; weakness; extreme thirst; loss of appetite; growth problems; or early signs of puberty, such as breast development in young girls, voice deepening in young boys, or armpit or pubic hair growth in any young child. WHAT CAUSES GERM CELL TUMORS? There is no answer at this time as to what causes germ cell tumors. It is important to understand that germ cell tumors are not contagious, and they have nothing to do with germs that cause infections. Germ cell tumors are not caused by anything anyone did, including during pregnancy with the child. It also is important to understand that germ cell tumors are not caused by anything the child ate or did not eat (such as vegetables or vitamins). WHO GETS GERM CELL TUMORS? Germ cell tumors are a relatively rare type of tumor in childhood. Close to half of all childhood germ cell tumors are cancerous. Only 2–3 out of every 1 million children will be diagnosed with a germ cell tumor each year. Germ cell tumors are most likely to occur in very young children (infants and toddlers) and in teens, but they can occur in children of any age. Boys with an undescended testicle (even if it has been surgically fixed) are at an increased risk of developing a germ cell tumor of the testicle. ARE GERM CELL TUMORS INHERITED? It does not appear that germ cell tumors are genetic (inherited from a parent). It is very rare to have more than one person in a family with a germ cell tumor.

WHAT ARE METASTASES? Metastases refer to the spread of the tumor from its first location to other parts of the body. If germ cell tumors metastasize, or spread, the most common places are to the lungs, liver, and central nervous system (brain). WHAT IS STAGING?

Staging is a way of identifying the location and amount of tumor at the time of diagnosis. There are four stages of germ cell tumors: • Stage I . The tumor can be fully removed surgically, the tumor has not spread, and the tumor markers are normal. • Stage II and III. The tumor has spread to local tissues or lymph nodes and may not be removed fully with surgery alone. • Stage IV. The tumor has spread to at least one other part of the body. The treatment method suggested for your child depends upon the stage of disease at the time of diagnosis.

WHAT TESTS AND PROCEDURES WILL MY CHILD NEED? To diagnose a germ cell tumor and decide the extent of your child’s disease, a number of tests and procedures will be needed, including many of tests described in the paragraphs below. TUMOR BIOPSY A tumor biopsy is the removal of a small amount of tissue to be looked at under a microscope. This test is needed to confirm the diagnosis and decide what the best treatment is. The biopsy most often is performed in the operating room by a surgeon who removes an enlarged lymph node or a small part of a tumor. In some medical centers, the biopsy is done in the radiology department, where a needle is guided into the lymph node or tumor to obtain the biopsy sample (fine needle aspiration biopsy). In other cases, a surgical incision is made. Patients are often sedated for biopsies; your child’s comfort and anxiety level will always be considered in planning for this procedure. BLOOD TESTS Blood tests help diagnose medical problems and monitor for side effects of treatment. A specially trained nurse or technician uses a needle to collect blood from a vein. The blood samples are collected in tubes that are sent to a laboratory to be closely examined. In some cases, a finger prick may give enough blood for a test. These tests are usually done at the time of diagnosis to rule out other diseases and serve as a baseline for your child. Complete Blood Count Blood is made up of plasma (the liquid part of the blood) and cells floating in the plasma. There are three types of blood cells: white blood cells, red blood cells, and platelets. The white blood cells fight infection as part of the body’s immune system. The red blood cells carry oxygen throughout the body. The platelets stop bleeding by rushing to the site of an injury to form a clot. A complete blood count, or CBC, is a blood test that measures the amount and health of these three types of cells. The CBC is useful in diagnosing blood disorders. It also is used to diagnose cancers of the blood system, such as leukemia. Your child’s CBC results may change with each test because of other things going on in the body, such as infections or nutritional problems, or in response to medications like chemotherapy.

Blood Chemistry A blood chemistry test measures the balance of fluid, electrolytes, and blood sugar. These measurements can provide information about the health and function of the kidneys and liver and about the body’s metabolism; they can also help diagnose certain diseases, such as diabetes. They can indicate how a disease is responding to treatment and monitor for possible side effects. Blood chemistry tests may be done to: • Measure creatinine and blood urea nitrogen (BUN) to monitor changes in kidney function • Detect changes in liver function by measuring bilirubin • Measure erythrocyte sedimentation rate (ESR) and levels of C-reactive protein (CRP), which are sometimes elevated by certain cancers Clotting and Bleeding Labs The Anti-Xa test, prothrombin time (PT), international normalized ratio (INR), and partial thromboplastin time (PTT) are blood tests that measure how fast blood clots. They are done when there is concern about too much bleeding or too much clotting, or to make sure blood is able to clot correctly during and after certain invasive procedures. If your child is taking medications that decrease the blood’s ability to clot, these tests may be done regularly to monitor effectiveness and potential side effects. A healthy liver has normal clotting levels, so sometimes these tests will be done if liver disease is suspected. MRI MRI (magnetic resonance imaging) uses radio waves and magnetic fields instead of X rays to create very detailed pictures of parts of the body. A computer translates the pattern of radio waves into images. MRI images are so clear that they are sometimes more useful than X rays or CT scans. This is true for areas of the brain and spinal cord, blood vessels, bones, and some organs of the body. Certain tumors are regularly checked by MRI during and after treatment to determine how effective the treatment is and if a relapse has occurred. For an MRI, a patient lies on a table that is rolled into a machine. The machine surrounds them on all sides, like a tube. (Open MRI machines exist for people who are very anxious in a regular MRI machine.) The MRI is painless, but the machine makes loud noises. Your child may use earplugs or a headset during the MRI. They must be able to lie completely still, and some children require sedation to do this. The MRI usually takes 1-2 hours. Often, a dye is injected into a vein to improve the MRI images. Because they use strong magnets, MRI machines cannot have metal objects inside them. Before an MRI, your child will be asked to remove all metal objects such as jewelry and clothes with metal snaps or zippers. An MRI does not expose your child to any form A CT (computerized or computed tomography) scan is a computer-assisted X ray that creates detailed pictures of internal organs and tumors. It used to be called a CAT (computerized axial tomography) scan. The CT machine is a doughnut-shaped X-ray camera that moves around a table that the patient lies on. Every second, the camera moves a very small distance around the patient while taking an X ray. A computer puts these X rays together to help the doctors see a cross-sectional, 3-D image from all angles. CT scans are very helpful in diagnosing and following the stage and location of cancer. CT scans are very useful in diagnosing tumors, infections, blood clots, and areas of abnormal bleeding. Some tumors are regularly checked by CT scan during and after treatment to see how effective the treatment has been and if a relapse has occurred. CT scans are painless, but the patient must lie still during the scan. Some children require sedation to help them lie still. If your child’s belly is being scanned, they may be asked to drink a dye that allows organs to be seen more clearly. Some patients may be given a small amount of dye through an intravenous (IV) line, which puts the dye right into their veins. The dye can cause a warm, flushing feeling. Generally, there are no side effects from either type of dye; however, allergic reactions are possible. Because there is some radiation exposure with this test, your child’s healthcare team will try to minimize how often it is done. of radiation. CT SCAN

BONE SCAN A bone scan is used to look for abnormalities in bones. It can be helpful in diagnosing primary bone tumors, cancers that have spread to bones, or infections in the bone. A small amount of radioactive dye (isotope) is given through an IV line and travels around the body. This isotope is picked up by tumor cells, which allows for the tumor’s location in the body to be seen. Pictures are taken about 2-3 hours after the injection. The test is painless, but some children require sedation to lie still for the scan. The radioactive isotope leaves the body in the urine over 2–3 days. There is very little radiation exposure from a bone scan X RAY An X ray is a simple procedure that uses low levels of radiation to create pictures of the tissues, organs, and bones inside the body. Standard X rays, which might be called plain films, are taken of areas that might be affected by your child’s condition. Children have to be still for a moment to have X rays taken, but X rays don’t cause pain. To minimize exposure to radiation, a special gown or vest will shield parts of your child’s body that aren’t being imaged, and you may be asked to step out of the room or wear similar protection when the X ray is taken. CHEST X RAY Chest X rays have many uses. For instance, they can be used to look for enlarged lymph nodes inside the chest or lungs, to diagnose infections or spread of disease in the lungs, or to check the placement of tubes and that were put in for treatment. ULTRASOUND Ultrasound is a technique that uses the echoes from high-frequency sound waves to produce a picture of internal organs or tumors. It has many uses, including finding tumors in the belly, checking the health of the kidneys and bladder, and measuring the size of some organs (like the liver, gall bladder, and spleen). A type of ultrasound that looks at the way blood flows and the condition of the blood vessels, Doppler, can be used to diagnose clots in blood vessels. An ultrasound is a painless test that does not use radiation. The child lies on a table for a short time, and a clear jelly is smeared on the area being examined. (The jelly wipes off easily after the test.) A small, round handle is moved around on the jelly to get a clear picture of the tissue or organ being examined. Depending on the location of the ultrasound, the child may not be allowed to eat or drink for several hours or may need to have a full bladder before the test. VENOUS ACCESS DEVICE (VAD) A venous access device (VAD), sometimes called a central venous catheter or central line, is a temporary or long-term intravenous (IV) tube that can be used for the duration of your child’s therapy (keep in mind that “therapy” can be used interchangeably with “treatment”). It is placed in a large vein in the chest or the arm. These long, flexible catheters empty into or near the heart, allowing necessary treatments to be given within seconds. They can be used to administer medications, fluids, chemotherapy, blood products, and nutritional support as needed and to draw blood for testing. A surgery is performed to insert the VAD, and your child will be sedated or given general anesthesia for the procedure. It will be placed either before chemotherapy begins or within the first month of treatment. Not all children will need a VAD. This will be determined by you and your child’s healthcare team. The VAD will be removed when it is no longer needed. There are different types of VADs, such as an implanted port inserted under the skin near the collarbone; a tunneled central venous catheter (Broviac® or Hickman®) that has a tube; a lumen (either single or double) which comes out of your child’s chest; or a PICC (peripherally inserted central catheter) line, a central line inserted through a vein in the arm. Your child’s healthcare team will discuss each type with you and help you choose the best device for your child’s treatment.

Each type of catheter requires slightly different care. A port requires almost no care at home, but a special needle will need to be inserted through the skin into the port each time it is used. Tubing can then be attached to the needle if needed to give medication or IV fluids. An external central line requires routine changes to the dressing that covers the exit site of the line and keeps it in place to prevent infection and to care for the skin around the tube. The external lines also must be routinely flushed with a solution to keep them working properly. You will be taught how to care for the device at home. HOW CAN GERM CELL TUMORS BE TREATED? Three types of therapy most often are used to treat germ cell tumors: surgery, chemotherapy, and radiation. The type of treatment offered to your child will depend upon the type of tumor and the amount of disease. A combination of treatments often is used. Your child’s doctor will talk with you about the best treatment choices The main treatment for benign and malignant germ cell tumors is surgery. Surgery to remove the main part of the tumor most often is done at the time of diagnosis. This is when the biopsy may be taken. For some noncancerous germ cell tumors, surgery may be the only treatment needed. For very large cancerous tumors, your child may receive chemotherapy or radiation first to shrink the tumor before surgery. Your child may need a “second-look” surgery after receiving a certain amount of treatment. This type of surgery is done to observe your child’s response to the treatment and plan for any further therapy that may be needed. CHEMOTHERAPY for your child. SURGERY

Chemotherapy is the use of medicines to stop cancer cell growth. Some chemotherapy drugs are known to be useful in the treatment of germ cell tumors, but there is no single chemotherapy medicine that can control this disease by itself. Each of the medicines kills the cancer cells in a different way, and this is why two or more chemotherapy medicines often are given together. Most chemotherapy medicines are given through a vein, and each treatment can last several days. When chemotherapy is needed, close monitoring of your child will be a priority. Your child’s healthcare provider will talk to you about the possible side effects of the specific chemotherapy treatment for your child as well as the medicines that can be given to control the side effects. RADIATION

Radiation therapy may be used in the treatment of some germ cell tumors. If your child needs radiation, the radiation oncologist will discuss with you how the radiation will be given and how long the treatments will last. Radiation treatment is very precise and is given in specially measured amounts by radiation therapy experts. Most of the time, children getting radiation therapy experience only a few side effects, such as feeling tired or having a decreased appetite. The possible side effects will be discussed with you in detail. HOW LONG WILL MY CHILD’S THERAPY LAST? This depends on the type and stage of your child’s tumor at the time of diagnosis. Most often, the treatment is given over several months. Follow-up blood tests and checkups between and after treatments often are done in the clinic or doctor’s office.

WHAT NEW METHODS OF TREATMENT ARE THERE? Clinical trials and research studies have provided progress and scientific discoveries to continually advance the treatment of childhood cancer. A clinical trial compares the best known (standard) treatment for a certain cancer with a new (experimental) treatment that is believed to be at least as good as, and possibly better than, the standard treatment. Clinical trials let doctors decide whether promising new treatments are safe and effective. Joining in clinical trials is voluntary and requires informed consent. During the informed consent process, the treatment choices and how they differ are explained to you. Because clinical trials involve research into new treatment plans, all risks cannot be known beforehand, and unknown side effects may occur. Before making a decision about your child’s participation in a clinical trial, you should talk about the risks as well as the potential benefits with your child’s doctor and treatment team. More information about clinical trials is available from the National Cancer Institute (NCI) at https://www. cancer.gov/about-cancer/treatment/clinical-trials/taking-part . NCI also offers additional information about germ cell tumors at www.cancer.gov/types/extragonadal-germ-cell . HOW CAN I WORK WITH MY CHILD’S HEALTHCARE TEAM? The care of your child requires a team approach. You are a key player on your child’s healthcare team. You know your child better than anyone else, and your input is important. Other members of your child’s healthcare team include doctors, nurses, pharmacists, and social workers.

Always communicate openly with the members of your child’s healthcare team. If there is anything you are not sure about, ask the team. Write down your questions as you think of them, so you’ll remember to ask them during your next meeting with your healthcare team. Important questions you may want to ask: • What stage is the disease and what does that mean? • What treatment choices are available?

• What treatment do you recommend and why? • What are the risks or side effects during the treatment? • What are the risks and side effects after the treatment? • What are my child’s chances for survival? • What are the chances that the disease or condition will recur? Use this space to write down some of the additional questions you might have:

ARE MY FEELINGS NORMAL AND WHAT CAN I DO ABOUT THEM? Hearing that your child has a disease is shocking and overwhelming. Many parents say, “I didn’t remember anything after the words, ‘Your child has been diagnosed with this disease.’” Parents often feel numb and have a hard time believing the diagnosis. It is important to know that this is normal and expected. Most families have difficulty processing all of the information the healthcare team is providing in the beginning. However, over time, the information will be repeated and can be absorbed. Many families feel somehow responsible for their child’s disease. Feelings of guilt are also common because they could not protect their child from illness or because of the amount of time it took to diagnose the child. This disease is not caused by anything that you did or did not do. The cause of childhood cancer is not known. It often takes time for the cancer diagnosis to be made because symptoms are often the same as those of many childhood illnesses. Feelings of sadness, anger, and helplessness about your child’s diagnosis also are common. These feelings are normal. Each member of the family may express these emotions in different ways and at different times. Talking honestly with each other about these feelings, emotions, and reactions will help everyone in the family. Keep in mind that there is no right or wrong way to feel. Each member of the family needs the chance to express their feelings when they are ready and in their own way. Talking to friends, family, and members of the healthcare team can be difficult at times—however, sharing your feelings can help you cope. Your child will benefit from family and friends showing their care through communication and support. HOW CAN I HELP MY CHILD? Children often think that something they did caused their disease. You can help your child by reinforcing that this is not the case. Make sure your child understands that your feelings of anger and sadness are directed at the cancer, not at them. This will help you keep a close relationship with your child. Your child will need to share their feelings with someone that they trust, and they may choose someone other than a parent to avoid upsetting the parent, which is OK. Don’t be afraid to ask your child about their feelings—it may be what your child is waiting for. Keep in mind that your child is still a child first in spite of the disease. As children go through treatment, they still have all the needs of a growing child. All children need love, attention, the opportunity to learn and try new skills, and limits. Do not avoid talking to your child about therapy. Use explanations that your child will understand. Children tolerate treatment better if they understand it and are allowed to help make decisions about their care, when appropriate. The things children can imagine on their own are often more frightening than what is actually happening. As a parent you may find it difficult to watch your child go through treatment. Your child may sometimes seem sicker during treatment than before treatment. Your feelings about

what your child is going through must be balanced with the knowledge that treatment provides the chance of curing the disease and making it possible for your child to live a full and meaningful life. It’s difficult to accept how

a disease and treatment can change your child, but most of these changes, like hair loss, are temporary. Despite outward changes, your child is still the same person on the inside. Most healthcare centers have a psychosocial team that can support you and your child through their diagnosis and treatment.

IS MY CHILD’S DIET IMPORTANT DURING TREATMENT? Yes, your child’s diet is important. Research has shown that well- nourished children tolerate treatment better and experience fewer treatment delays.

Nausea and vomiting can be a distressing side effect of treatment, and your child’s healthcare team will prescribe medications to help prevent and treat these side effects. Your child may have difficulty eating normal meals during treatment. Foods that are appealing to your child will be tolerated better. Offer foods that are high in calories, protein, and carbohydrates. Small frequent meals are often better tolerated than three larger meals. When possible, choose more nutritious foods. Your child’s nurse or dietitian can help you put together a list of possible food choices.

If steroid medications, such as prednisone or dexamethasone (Decadron), are part of the treatment, your child’s appetite will likely be increased. These medicines may make your child feel constantly hungry and crave unusual foods. Your child may want one particular food constantly. Try to keep healthy snacks on hand. Steroids may cause your child to gain weight and develop a round face and puffy appearance, but these side effects are temporary. It is important to offer your child fluids to drink frequently throughout the day so that dehydration is avoided. Signs of dehydration include decreased urine output, dizziness, and a dry mouth. Multivitamins, herbs, and other supplements should be avoided unless approved by your child’s healthcare team because they can interact with your child’s treatment. Please ask your healthcare team if you are considering having your child take any of these types of supplements. A dietitian may be a member of your child’s healthcare team. Dietitians are trained in the calorie and nutritional needs of children. The dietitian can provide you with education regarding your child’s dietary needs and give you ideas about how to meet these needs during treatment. Your child’s healthcare team will monitor your child’s nutritional status, height, and weight during and after treatment to try to prevent problems. When a concern about nutrition arises, your child’s healthcare team will discuss with you the ways to manage and improve your child’s nutrition

CAN MY CHILD ATTEND SCHOOL DURING TREATMENT? Your child’s ability to go to school during therapy will depend on the intensity of the treatment and your child’s response to the treatment. There may be extended periods when your child is unable to go to school because of hospitalizations or treatments. However, it is important that your child keep up with schoolwork, even during these times. Federal laws protect children with disabilities or illnesses to ensure that they receive the same education as their peers. Talk with your child’s healthcare team and school staff about these laws. Then work with them to arrange for a tutor or finding other ways to help your child stay on track with schoolwork.

Discuss with the healthcare team your child’s ability to attend school. Some children are able to attend school between hospitalizations or treatments. Many hospitals and clinics have resources such as educational liaisons to assist in coordinating school services and educating teachers and classmates to prepare them for your child’s return to school.

IMPORTANT PHONE NUMBERS

NOTES

8735 W. Higgins Road, Suite 300 Chicago, IL 60631 847.375.4724 • Fax 847.375.6478

info@aphon.org www.aphon.org

Manual para pacientes y familiares • Serie Oncología Tumores de células germinales

Tumores de células germinales

Manual para pacientes y familiares

Editado por Elizabeth Thomson Litterini, MS RN CPNP®

Revisor de contenido Consejo directivo

Revisora de padres y pacientes Yesica Santos

Con la contribución de Deborah Bond Berk, LICSW

La Association of Pediatric Hematology/Oncology Nurses (APHON) publica este manual únicamente con fines educativos. El material ha sido desarrollado por fuentes consideradas confiables. El material no pretende representar el único tratamiento aceptable o seguro de los tumores de células germinales. Bajo ciertas circunstancias o condiciones, se puede requerir un tratamiento adicional o diferente. A medida que las nuevas investigaciones y la experiencia clínica amplíen las fuentes de información disponibles sobre el tratamiento de los tumores de células germinales es posible que se requieran ajustes en el tratamiento y la farmacoterapia. APHON no ofrece ninguna garantía, seguridad u otra representación, expresa o implícita, con respecto a la validez o suficiencia de los tratamientos o la información relacionada contenida en este manual. Los manuales APHON para pacientes y familiares han sido desarrollados por proveedores de atención médica con formación y que actualmente ejercen en los Estados Unidos, principalmente. APHON reconoce que los tratamientos y prácticas presentados en este manual, que coinciden o que son reconocidos como estándar en los Estados Unidos, pueden diferir de los de otros países. APHON alienta a los usuarios a referirse a los métodos de tratamiento y prácticas preferidas de su organismo rector y al consejo de proveedores de atención médica. APHON proporciona este manual únicamente para uso educativo. Los usuarios pueden copiar y distribuir este material sólo en su forma no adaptada, para uso no comercial y con atribución otorgada a APHON.

¿QUÉ ES UN TUMOR DE CÉLULAS GERMINALES? Un tumor de células germinales es un crecimiento anormal que proviene de las células de un ovario o testículo en desarrollo. Los tumores de células germinales pueden ser malignos (cancerosos) o benignos (no cancerosos) y están formados por células que producen espermatozoides y óvulos (células germinales). Las células germinales forman parte del sistema reproductivo y comienzan a crecer antes de que nazca el bebé. Las células germinales viajan hacia el sitio donde crecerán los testículos o los ovarios, por ejemplo, hacia el saco escrotal como células testiculares o hacia la pelvis como células ováricas. Frecuentemente, se desarrollan en el ovario o el testículo, que también se denominan gónadas. El lugar más común para que se desarrollen los tumores de células germinales fuera del ovario o el testículo es la región sacrococcígea (área pélvica y coxis), el cerebro, el abdomen (vientre), el cuello o el tórax. Cuando los tumores de células germinales se forman fuera de las gónadas, se denominan extragonadales.

¿CUÁLES SON ALGUNOS SÍNTOMAS DE UN TUMOR DE CÉLULAS GERMINALES?

Los síntomas de un tumor de células germinales dependen de su tamaño y ubicación. Por ejem., si el tumor se encuentra en el abdomen, el vientre se ve hinchado. Si está en un testículo, el escroto estará inflamado y el testículo, agrandado o con un tamaño desigual. En el ovario, puede haber dolor, molestias y vientre hinchado. En el área pélvica puede causar estreñimiento (irregularidad o dificultad para defecar), dificultad para orinar (mear) o un vientre hinchado. En en el área sacrococcígea, habrá problemas para orinar, estreñimiento y debilidad en las piernas. En el pecho puede causar tos, dificultad para respirar o dolor en el pecho. En el cerebro, puede causar cambios en la vista o el habla; debilidad; sed extrema; pérdida de apetito; problemas de crecimiento; o signos tempranos de la pubertad, como el desarrollo de los senos en las niñas, voz más grave en los niños pequeños o crecimiento de vello púbico o axilar en niños pequeño.

¿QUÉ CAUSA LOS TUMORES DE CÉLULAS GERMINALES? Por el momento no se saben las causas de los tumores de células germinales. Es importante entender que los tumores de células germinales no son contagiosos ni tienen nada que ver con los gérmenes que causan infecciones. No son causados por nada que se haya hecho, incluso durante el embarazo. También es importante entender que no son causados por nada que los niños hayan comido o dejado de comer (como verduras o vitaminas). ¿QUIÉN CONTRAE TUMORES DE CÉLULAS GERMINALES? Son un tipo de tumor relativamente raro en la infancia. Casi el 50% de estos tumores infantiles son cancerosos. Sólo 2 o 3 de cada millón de niños son diagnosticados con un tumor de células germinales cada año. Estos tumores tienen más probabilidades de darse en niños muy pequeños (bebés y niños pequeños) y en adolescentes, pero también en niños de cualquier edad. Los niños con un testículo no descendido (aun si se ha reparado quirúrgicamente) tienen más riesgo de desarrollar un tumor de células germinales en el testículo. ¿LOS TUMORES DE CÉLULAS GERMINALES SE HEREDAN? Al parecer los tumores de células germinales no son genéticos (heredados de uno de los padres). Es muy raro que haya más de una persona en una familia con un tumor de células germinales.

¿QUÉ ES LA METÁSTASIS? Metástasis es la diseminación del tumor desde su primera ubicación a otras partes del cuerpo. Si estos tumores hacen metástasis, los lugares más comunes son los pulmones, el hígado y el sistema nervioso central (cerebro). ¿QUÉ ES LA ESTADIFICACIÓN ?

La estadificación es el proceso que determina la ubicación y la cantidad de tumor presente en el momento del diagnóstico. Los tumores de células germinales tienen cuatro estadios: • Estadio I. El tumor se puede extirpar por completo con cirugía, no se ha propagado y los marcadores tumorales son normales. • Estadios II y III. El tumor se ha diseminado a los tejidos locales o a los ganglios linfáticos y no se puede extirpar todo con cirugía. • Estadio IV. El tumor se ha propagado al menos a otra parte del cuerpo. El método de tratamiento sugerido para tu hijo(a) depende del estadio de la enfermedad en el momento del diagnóstico.

¿QUÉ PRUEBAS Y PROCEDIMIENTOS NECESITARÁ MI HIJO(A)? Para diagnosticar un tumor de células germinales y decidir el alcance de la enfermedad de tu hijo(a), se hacen una serie de pruebas y procedimientos, incluidos muchos de las descritas a continuación. BIOPSIA TUMORAL La biopsia de una tumor es la extirpación de una pequeña parte de tejido para observarla con un microscopio. Esta prueba es necesaria para confirmar el diagnóstico y decidir cuál es el mejor tratamiento. La biopsia generalmente la realiza un cirujano que extirpa un ganglio linfático agrandado o una pequeña parte de un tumor. En algunos centros médicos, se realiza en el departamento de radiología, donde se guía una aguja hacia el ganglio linfático o el tumor para obtener la muestra de la biopsia (biopsia por aspiración con aguja fina). En otros casos, se realiza una incisión quirúrgica. Los pacientes son sedados para las biopsias; el nivel de comodidad y ansiedad de tu hijo(a) siempre se tomará en cuenta al planificar este procedimiento. ANÁLISIS DE SANGRE Los análisis de sangre diagnostican problemas médicos y controlan los efectos secundarios del tratamiento. Una persona capacitada extrae sangre de una vena con una aguja; esta sangre se recolecta en tubos y se envía a un laboratorio para ser examinada. A veces, un pinchazo en el dedo da suficiente sangre para la prueba. Las pruebas se realizan en el momento del diagnóstico para descartar otras enfermedades y servir como referencia. Los análisis de sangre se usan durante todo el tratamiento para controlar los posibles efectos

secundarios y la respuesta al tratamiento. HEMOGRAMA COMPLETO (CNB)

La sangre se compone de plasma (la parte líquida de la sangre) y de células que flotan en el plasma. Hay tres tipos de glóbulos: glóbulos blancos, glóbulos rojos y plaquetas. Los glóbulos blancos combaten las infecciones como parte del sistema inmunológico del cuerpo. Los glóbulos rojos transportan oxígeno por todo el cuerpo. Las plaquetas detienen el sangrado al ir al sitio de una lesión para formar un coágulo. Un conteo sanguíneo completo, o CBC, es un análisis de sangre que mide la cantidad y la salud de estos tres tipos de células. Es útil en el diagnóstico de trastornos de la sangre, así como en el de cánceres del sistema sanguíneo, como la leucemia. Los resultados de tu hijo(a) pueden cambiar cada vez debido a otras causas, como infecciones o problemas nutricionales, o a una respuesta a medicamentos como la quimioterapia.

Química sanguínea Una prueba de química sanguínea mide el equilibrio de líquidos, electrolitos y azúcar en la sangre. Estas mediciones dan información sobre la salud y el funcionamiento de los riñones y el hígado y sobre el metabolismo del cuerpo. También ayudan a diagnosticar ciertas enfermedades, como la diabetes. Indican cómo responde una enfermedad al tratamiento y monitorean los posibles efectos secundarios. Se pueden hacer pruebas de química sanguínea para: • Medir la creatinina y el nitrógeno ureico en sangre (BUN) para controlar los cambios en la función renal • Detectar cambios en la función hepática midiendo la bilirrubina • Medir la tasa de sedimentación de eritrocitos (ESR) y los niveles de proteína C reactiva (CRP), que a veces son elevados por ciertos tipos de cáncer Análisis de laboratorio de coagulación y sangrado La prueba de factor Anti-Xa, el tiempo de protrombina (PT), el índice normalizado internacional (INR) y el tiempo de tromboplastina parcial (PTT) son pruebas de sangre que miden qué tan rápido coagula la sangre. Se hacen cuando preocupa que haya demasiado sangrado o demasiada coagulación, o para ver si la sangre podrá coagular bien durante y después de procedimientos invasivos. Si tu hijo(a) toma medicamentos que reducen la coagulación, se le harán las pruebas regularmente para controlar la eficacia y los posibles efectos secundarios. Un hígado sano tiene niveles normales de coagulación, por lo que a veces se harán estas pruebas La MRI usa ondas de radio y campos magnéticos en lugar de rayos X para crear imágenes detalladas de partes del cuerpo. Una computadora traduce el patrón de ondas de radio en imágenes tan claras que a veces son más útiles que las de los rayos X o de las de CT, en especial para las áreas del cerebro y la médula espinal, los vasos sanguíneos, los huesos y algunos órganos del cuerpo. Ciertos tumores se revisan periódicamente durante y después del tratamiento para determinar cuán efectivo es el tratamiento y si se ha producido una recaída. Para la MRI, el paciente se acuesta sobre una mesa, y una máquina en forma de tubo se desliza rodeándolo por todos los lados. (Hay máquinas MIR abiertas para personas que se ponen muy ansiosas en una cerrada). El procedimiento es indoloro, pero la maquina hace ruidos muy fuertes. Tu hijo(a) puede usar tapones para los oídos o auriculares durante la prueba. Algunos niños se sedan para estar completamente quietos. La MRI suele tomar de 1 a 2 horas. A veces, se inyecta un tinte en una vena para mejorar las imágenes. Como se usan potentes imanes, no puede haber objetos metálicos en el interior de la máquina, por lo que se le pedirá a tu hijo(a) que se quite los objetos metálicos, como joyería y ropa con broches o cremalleras de metal. La MRI no La tomografía computarizada (CT) es una radiografía asistida por computadora que crea imágenes de los órganos internos y los tumores. Solía llamarse exploración CAT (tomografía axial computarizada). La máquina de CT es una cámara de rayos X en forma de dona que se mueve lentamente alrededor de una mesa en la que se acuesta el paciente. La cámara avanza lentamente alrededor del paciente tomando una radiografía. Estos rayos X se juntan para formar una imagen 3D transversal desde todos los ángulos. La CT es muy útil para detectar y seguir el estadio y la ubicación del cáncer, así como para detectar tumores, infecciones, coágulos de sangre y áreas de sangrado anormal. Algunos tumores se examinan periódicamente mediante una CT durante y después del tratamiento para ver qué tan efectivo ha sido éste y si ha ocurrido una recaída. si se sospecha de una enfermedad hepática. RESONANCIA MAGNÉTICA (MRI) expone a tu hijo(a) a ninguna forma de radiación. TOMOGRAFÍA COMPUTARIZADA (CT) La tomografía computarizada es indolora, pero el paciente debe permanecer quieto durante la prueba, por lo que algunos niños serán sedados. Si se escanea el vientre de tu hijo(a), deberá beber un tinte que permita ver los órganos con mayor claridad. A veces el tinte se da a través de una línea intravenosa (IV) que va directamente a las venas. El tinte puede causar una sensación de calor y enrojecimiento, pero, en general, no hay efectos secundarios con ninguno de los dos tipos de tinte; aunque las reacciones alérgicas son posibles. Se minimizará la frecuencia de la prueba por la exposición a la radiación .

GAMMAGRAFÍA ÓSEA Se usa para buscar anomalías en los huesos. Diagnostica tumores óseos primarios, cánceres que se han propagado a los huesos o infecciones óseas. Se da una pequeña cantidad de tinte radiactivo (isótopo) vía intravenosa, que viaja por todo el cuerpo. El isótopo es recogido por las células tumorales, señalando la ubicación del tumor. Las imágenes se toman alrededor de 2 a 3 horas después de la inyección. La prueba es indolora, pero algunos niños son sedados durante la exploración para que no se muevan. El isótopo radiactivo sale por la orina durante 2 o 3 días. Hay muy poca exposición a la radiación en una gammagrafía ósea. RAYOS X Es un procedimiento simple que utiliza bajos niveles de radiación para crear imágenes de los tejidos, órganos y huesos dentro del cuerpo. Se usan rayos X estándar, llamados también placas simples, de las áreas que pudieran estar afectadas. Los niños deben permanecer quietos por un momento para que se tomen los rayos X, pero estos no causan dolor. Para que la exposición a la radiación sea menor, una bata o chaleco especial protegerá las partes del cuerpo que no están siendo analizadas, y es posible que te pidan que salgas de la habitación o que uses una protección similar. RADIOGRAFÍA DE TÓRAX Las radiografías de tórax tienen muchos usos. Por ejemplo, se pueden usar para buscar ganglios linfáticos agrandados dentro del tórax o los pulmones, para diagnosticar infecciones, ver si hay una propagación de enfermedades en los pulmones, o para verificar la ubicación de los tubos que se colocaron para el tratamiento. ULTRASONIDO O ECOGRAFÍA La ecografía es una técnica que utiliza ecos de ondas sonoras de alta frecuencia para producir una imagen de órganos internos o tumores. Tiene muchos usos, entre ellos encontrar tumores en el vientre, controlar la salud de los riñones y la vejiga y medir el tamaño de algunos órganos (como el hígado, la vesícula biliar y el bazo). El Doppler es un tipo de ultrasonido que analiza la forma en que fluye la sangre y el estado de los vasos sanguíneos, se usa para diagnosticar coágulos en los vasos sanguíneos. La ecografía es una prueba indolora que no utiliza radiación. El paciente se acuesta en una mesa por un corto tiempo y se le unta un gel transparente en el área que se está examinando. (El gel se limpia fácilmente después de la prueba). Se mueve una manija pequeña y redonda sobre el gel para obtener una imagen clara del tejido u órgano que se está examinando. Según la ubicación de la ecografía, es posible que no se le permita a tu hijo(a) comer ni beber durante varias horas o que deba tener la vejiga llena antes de la prueba. DISPOSITIVO DE ACCESO VENOSO (VAD) El dispositivo de acceso venoso (VAD), a veces llamado catéter venoso central o línea central, es un tubo intravenoso (IV) temporal o de largo plazo que se usa durante la terapia de tu hijo(a) y que se coloca en una vena grande del pecho o del brazo. (Ten en cuenta que “terapia” se puede usar indistintamente como “tratamiento”). Estos catéteres largos y flexibles desembocan dentro o cerca del corazón, lo que permite administrar tratamientos en segundos. Se usa para administrar medicamentos, líquidos, quimioterapia, hemoderivados, apoyo nutricional y para extraer sangre para análisis. El VAD se inserta mediate una cirugía durante la cual el paciente estará sedado o bajo anestesia general. El VAD se coloca antes de la quimioterapia o durante el primer mes de tratamiento. No todos los niños necesitarán un VAD. Esto lo determinarán entre tú y el equipo de atención médica de tu hijo(a). El VAD se retirará cuando ya no sea necesario. Existen diferentes tipos de VAD, como un puerto implantado que se inserta bajo la piel cerca de la clavícula; un catéter venoso central tunelizado (Broviac® o Hickman®) con tubo; un lumen (simple o doble) que sale del pecho de tu hijo(a); o una vía PICC (catéter central de inserción periférica), que se inserta a través de una vena en el brazo. El equipo de atención médica de tu hijo(a) analizará contigo cada uno de estos y te ayudará a elegir el mejor dispositivo para su tratamiento.

Cada tipo de catéter requiere un cuidado diferente. Un puerto casi no requiere cuidado en el hogar, pero es necesario insertar una aguja especial a través de la piel en el puerto cada vez que se usa. Luego se conecta un tubo a esa aguja para administrar medicamentos o líquidos por vía intravenosa. Una vía central externa requiere cambios de rutina en el vendaje que cubre el sitio de salida de la vía y que la mantiene en su lugar para prevenir infecciones, además de cuidar la piel alrededor de la sonda. Las líneas externas también se enjuagan de forma rutinaria con una solución para que funcionanen correctamente. Se te enseñará cómo cuidar el dispositivo en casa. ¿CÓMO SE TRATAN LOS TUMORES DE CÉLULAS GERMINALES? Son tres tipos de terapia los que se usan con mayor frecuencia para tratar los tumores de células germinales: cirugía, quimioterapia y radiación. El tipo de tratamiento para tu hijo(a) dependerá del tipo de tumor y de la magnitud de la enfermedad. A menudo se utiliza una combinación de tratamientos. El médico hablará contigo sobre las mejores opciones de tratamiento. CIRUGÍA La cirugía es la principal opción para los tumores de células germinales benignos y malignos. Generalmente se realiza en el momento del diagnóstico para extirpar la parte principal del tumor. Es aquí cuando se toma la biopsia. Para algunos de estos tumores no cancerosos, la cirugía es el único tratamiento necesario. Para tumores cancerosos muy grandes, se da primero quimioterapia o radiación para reducir su tamaño antes de la cirugía. Se hace una cirugía de “revisión” después de recibir cierta cantidad de tratamiento para ver la respuesta al tratamiento y planificar cualquier terapia adicional que ser necesaria. QUIMIOTERAPIA

La quimioterapia es un tratamiento con medicamentos que eliminan las células cancerosas, reducen los tumores y evitan que las células cancerosas se propaguen. Hay varios medicamentos de quimioterapia que pueden tratar los tumores de células germinales, pero ninguno puede, por sí solo, controlar la enfermedad. Por esto, se administran combinados por una vena. Cada ciclo de tratamiento dura varios días y puede recibirse en el hospital. Tu hijo(a) puede recibir algunos medicamentos de quimioterapia para administrar en una clínica o en casa. Con la quimioterapia, la vigilancia estrecha es una prioridad. Se te explicarán los posibles efectos secundarios del tratamiento de quimioterapia específico recomendado para tu hijo(a). RADIACIÓN

La radioterapia se puede usar en el tratamiento de algunos tumores de células germinales. Si tu hijo(a) necesita radiación, el oncólogo radiólogo discutirá contigo cómo se administrará la radiación y cuánto durarán los tratamientos. El tratamiento de radiación es muy preciso y se administra en cantidades especialmente medidas. La mayoría de las veces, los niños que reciben radioterapia sólo experimentan algunos efectos secundarios, como cansancio o disminución del apetito. Los efectos secundarios se discutirán contigo en detalle. ¿CUÁNTO DURARÁ LA TERAPIA DE MI HIJO(A)? La duración del tratamiento, o terapia, depende del tipo y el estadio del tumor en el momento del diagnóstico. Por lo general, el tratamiento se da por varios meses. Los análisis de sangre de seguimiento y los controles entre y después de los tratamientos generalmente se realizan en la clínica o en el consultorio médico.

Page 1 Page 2 Page 3 Page 4 Page 5 Page 6 Page 7 Page 8 Page 9 Page 10 Page 11 Page 12 Page 13 Page 14 Page 15 Page 16 Page 17 Page 18 Page 19 Page 20 Page 21 Page 22 Page 23 Page 24 Page 25 Page 26

aphon.org