Young People with Cancer
A Handbook for Parents

National Cancer Institute
National Institutes of Health

Tips for Clinic Visits
and Medical Procedures

Listed below are some ideas for making treatment and medical procedures easier. These are based on the experience of other parents and are offered only as suggestions.

• Become involved in the health care of your child. Begin by informing yourself about your child's diagnosis and treatment. Your child's doctor or other members of the health care team can provide you with current information from books or pamphlets. Next, participate in decisions about your child's treatment. Remember, you and your child and the health professionals are partners in your child's health care. You may want to set up a meeting with the health care team, which may include nurses, doctors, social workers, nutritionists, and others, to discuss your concerns. Before that meeting, make a list of questions.
  
• Prepare your child for medical tests. You need to become informed about a test before explaining it to your child. Ask the doctor or other health care team members for information and how best to explain the test to your child. Your child may react with anger or fear, but knowing this information in advance helps to build a child's trust in adults. Using language that takes into account the child's age and understanding, you can tell what will be done and why. You may want to use dolls and puppets or other playthings. Be honest about the amount and type of pain the treatment will bring. Above all, listen to your child's questions and encourage your child to express feelings about what was just heard.
  
• Plan to stay with your child during a test or treatment. Your presence can do much to reassure and comfort your child and can make discussion afterward easier for you. Encourage your child to take part and make choices wherever possible. For example, your child may want to hold a gauze pad or watch for a signal. This helps children feel as if they have some control.
  
• Keep a daily log of your child's temperature, activity level, feelings, sleep patterns, amount of drugs given, and any reaction, among other information. Also, record the treatments and clinic visits. You and an older child may want to work together on keeping this log. Be sure to bring this log with you to your clinic visits. It will be helpful to your child's doctors.
  
• Bring a favorite toy or book to the clinic to comfort your child during the wait and the discomfort of treatment. Since waits are sometimes long and space is limited, reading, crafts, or quiet games can help pass the time. Teenagers may want to bring crafts, electronic games, playing cards, books, or magazines.
  
• Be discreet when talking with other parents or with patients in the waiting room. Don't discuss aspects of your child's illness that you haven't discussed with your child.

When To Call the Doctor

Ask when your child's physician should be called. Call when you have questions or if you are unsure whether something should be reported.

In general, you should let a physician or other team member know if your child has any of the following:

• A fever or other sign of infection of just doesn't "look well."
• Exposure to a contagious infection, especially chickenpox or measles, unless your child is known to be immune from prior exposure or develops a contagious infection.
• Persistent headaches, pain, or discomfort anywhere in the body.
• Difficulty in walking or bending.
• Pain during urination or bowel movements.
• Reddened or swollen areas.
• Vomiting, unless you have been told that your child might vomit after chemotherapy or radiation.
• Problems with eyesight such as blurred or double vision.
• Bleeding. In addition to obvious bleeding such as nosebleeds, signs of bleeding can be seen in the stools (red or black), in the urine (pink, red, or brown), in vomit (red or brown, like coffee grounds), or the presence of multiple bruises.
• Other troublesome side effects of treatment such as mouth sores, constipation (beyond 2 days), diarrhea, and easy bruising.
• Marked depression or a sudden change in behavior.

You should also check with your child's physician when your child is due to receive any kind of vaccination or any form of dental care.

Common Medical Procedures

Evaluation and treatment of a young person with cancer involve a variety of diagnostic procedures. Many of these are repeated at intervals over the course of treatment to monitor progress and response to therapy. These procedures should be carefully explained to you and your child before they are carried out. If you have any questions, do not hesitate to ask your physician or another member of the treatment team.

Angiograms

Angiograms reveal blocking, deviation, or abnormal development of blood vessels, which may indicate the presence of a growing tumor. The blood vessels are injected with dye and then X-rayed. A similar type of study, lymphangiography, can be used when cancer involving the lymphatic system is suspected.

Biopsy

Biopsy is a surgical procedure used to determine whether tumor tissue is benign or cancerous. For this test, a small piece of tissue is removed from the tumor and then examined under a microscope to check for the presence of cancer cells. The tissue is examined by a pathologist, a physician who is an expert at identifying the changes in body tissue caused by disease. This microscopic study of the tissue confirms or rules out a diagnosis of cancer.

Blood Studies

Blood studies evaluate the young person's blood and the components of the blood using a variety of tests. The blood studied in these tests is obtained by drawing blood from a vein with a syringe or by a "fingerstick," in which a small prick is made in a fingertip and a few drops drawn off.

Different tests that may be performed to study the blood include:

White Blood Cell Count (WBC)

Blood cells ("blood smear") are stained on a slide and examined under a microscope. The white blood cells, those components of the blood that fight infection, are counted, and the number of those cells per cubic millimeter of blood is established. Young people receiving chemotherapy generally have a lower white cell count than normal. This test is also used to detect the presence of leukemic blasts.

Hemoglobin

Measurements are taken of the amount of hemoglobin, the substance in the red blood cell that carries oxygen and is responsible for the blood's red color. Lower amounts than normal of this substance in the red blood cells indicate anemia. If the patient shows a low hemoglobin, physicians may do other tests to find out why and give medication (iron supplements in some cases) to correct it. A sudden appearance of anemia may suggest a relapse or be a side effect of chemotherapy.

Hematocrit

This is a measure of the amount of red blood cells and is expressed as the percentage of the whole blood that is made up of red cells. A low count may indicate anemia.

Platelet

The number of platelets (the component of the blood that helps stop bleeding in case of injury) per cubic millimeter of blood is counted. A platelet count below normal range may be due to relapse, side effects of medication, or infection. If platelet counts are low, more tests may be necessary to find out the reason.

Bone Marrow Aspiration

Bone marrow aspiration evaluates the stem cells that mature into normal blood cells. The procedure is used to diagnose leukemia and to check the response to treatment. In young people with other cancers, it determines whether the disease has spread to the bone marrow.

Bone marrow aspirations in young people are usually done in the pelvis (hip bone). The patient lies on the stomach with a pillow under the pelvis, and the area is cleaned with an iodine solution to kill skin bacteria. Then the skin is numbed with a local anesthetic, and the bone marrow needle is put through the skin and into the spongy part of the bone. A sensation of pressure is felt; some patients also complain of pain. Once the needle is in place, marrow is quickly drawn into a syringe. This is the most painful phase, but lasts only a second or two.

The entire procedure usually takes about 5 minutes and is not dangerous, but it may be stressful to the patient. Attempts to reduce a patient's anxiety and get him or her to relax may reduce the pain of this procedure and certainly the stress. Usually there is only temporary tenderness at the site, and the young person can get up and go immediately afterward.

Computerized Tomography

Computerized tomography (CTscan) is an x-ray technique for detecting masses in the body. While the young person lies still, a narrow x-ray beam directed by a computer revolves around him or her. In a matter of seconds the machine registers thousands of bits of information, which are translated into a cross-sectional picture on a viewing screen. The physician can also refer to a printout for more detailed analysis.

In computerized axial tomography, a computer directs X-ray beams from a rotating disc at regular intervals. The beams travel through the portion of the body being studied onto a device that registers the beam's path. The results are analyzed by a computer, and the data appear as a three-dimensional image on a TV screen.

Magnetic Resonance Imaging

Magnetic resonance imaging is a new technique that uses magnetic fields and radio waves linked to a computer to create pictures of areas inside the body. The patient lies on a table that slides into a tunnel-shaped piece of equipment. Antennas within the MRI machine pick up the radio waves within and feed them into a computer which assembles a picture. Because MRI can "see" through bone, it can provide clearer pictures of tumor located near bone, especially brain tumors. MRI takes longer than a CT scan, and it is very noisy, which may be scary for some children.

Lumbar Puncture

Lumbar puncture (L.P. or spinal tap) is used to determine whether cancer cells or infection is present in the cerebrospinal fluid (CSF) that surrounds the brain and spinal cord. It is also used to deliver anticancer drugs directly to the brain and spinal cord.

An L.P. is done while the patient is lying on one side or sitting. In either instance, it is very important that the patient be in a tight ball so the lower back is rounded and the backbone projects backward. After the young person is in position, a local anesthetic is given in the lower back. The patient is held in a tight ball and the needle is inserted between the vertebrae into the fluid space around the spinal cord. The patient may feel some pressure. A sample of CSF is collected and examined for blood and cancer cells. It also is checked for the level of sugar and protein and can be cultured to check for infection. After the fluid is collected, medicines may be given through the puncture. The patient may feel anxious, but some of this may be alleviated if the patient can learn to relax during the procedure.

Usually there are no aftereffects, but sometimes the young person may get a headache when sitting or standing. Sometimes the headache can be prevented by lying flat for about an hour after the procedure and by increasing fluid intake for 24 hours afterward. Fortunately, headaches are uncommon, and usually the young person can return to normal activity.

When anticancer drugs are given into the spinal fluid, nausea and vomiting may occur. Antinausea medicines may be prescribed by the physician.

Scans or Radioisotope Studies

Scans or radiosiotope studies are used to discover abnormalities in the liver, brain, bones, kidneys, and other organs. In these tests, chemicals that collect in particular organs can be "labeled" with a harmless radioactive material. The young person swallows the material or it may be injected into a vein. After a short waiting period, electronic devices are used to track the radioactive material as it collects within the body. Looking at how the material distributes itself in the body, the physician can then "see" whether an organ is functioning correctly or if it contains an abnormal mass or masses. Your child will not be radioactive during or after these tests.

Ultrasound Studies

Ultrasound studies determine the presence of tumors in the young person's body. Because tumors generate different "echoes" than normal tissue, sound waves above the range of human hearing can be bounced off tissue and then changed electronically into images. Ultrasound is particularly effective in diagnosis because it can "recognize" masses that are not cancerous.

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