Young People with Cancer
A Handbook for Parents

National Cancer Institute
National Institutes of Health

Treatment

When a diagnosis of cancer is confirmed, it is best for your child to begin treatment at a center that has an experienced staff and the resources to apply the most effective form(s) of treatment right from the beginning. Your family physician or pediatrician can help you find such a center where specialists in childhood cancer will be in charge of your child's care.

Your child's treatment will be based on medical advances learned from treating many other young people. For some types of cancer, treatment programs may be well established. However, research for effective treatments is constantly under way, and your child may be treated under a research protocol (or regimen), which is a general treatment plan that several hospitals use for treatment of one type of cancer. The protocol is carefully designed to establish the ideal type, frequency, and duration of treatment.

Still, because children's reactions to therapy vary, the treatments may need to be modified to allow for individual differences. If a child is unable to tolerate a treatment plan or protocol, and minor adjustments do not correct this, another treatment plan may be begun or a specially designed program created. Before any therapy begins, the doctor should discuss the treatment program with you, including benefits and risks, and obtain your consent. Depending on the hospital's policy on the age at which a patient's agreement is necessary to undertake therapy, your child may also be required to approve it.

The treatment plan may look complicated at first, but each of the steps will be carefully explained, and you will soon become familiar with the routine.

At the treatment center, your child may be seen by different physicians from time to time, all of whom will follow the basic treatment plan. Your child may also be examined by resident physicians, fellows, and medical students who are working in the center as part of the educational program in cancer medicine and pediatrics. All residents and fellows are experienced physicians who are near the end of their training period, and their work is supervised by a senior physician.

In addition to these physicians at the treatment center, your family physician or pediatrician may continue to play an active role in the care of your child. With current information on the therapy prescribed for your child, your doctor can remain a source of advice and treatment for routine medical care and problems. Especially if distance between your home and the treatment center is a factor, your local physician may be called on to do blood tests or administer chemotherapy prescribed by the center physicians; thus, the number of visits to the center may be reduced. If that is the case, your child's initial hospitalization or outpatient treatment will usually take place at the center, and you will return there for periodic checkups.

 

The exact type of treatment your child will receive depends on the type of cancer. Most patients receive surgery, radiation therapy, chemotherapy, or a combination of these. These treatments aim at bringing about a remission, the decrease or disappearance of symptoms of the cancer. There are two major phases of treatment: remission induction and remission maintenance. Remission induction attempts to establish a "clinical" remission, in which detectable cancer has been eliminated. If this phase is successful, maintenance therapy aims at reaching undetectable cancer cells, which experience has shown may remain in the body. Remission induction may be accomplished through surgery, radiation, or chemotherapy. Maintenance therapy involves the use of chemotherapy and may last only a few months or go on for several years.

Hospitalization

With admission to the hospital, the child enters a new world, with new people and strange machines, procedures, and routines. The child sees other patients, observes their conditions, and strives to achieve some kind of order out of the surrounding confusion. From the beginning, it is important to encourage your child to ask any and all questions, express all concerns, and seek answers to what may not be understood in the hospital environment.

Hospitalization can be a traumatic experience for any child. Experiencing difficult medical procedures and continually meeting new people who do all sorts of things to the child build up tension. The young patient may become nervous, anxious, and unruly. For the hospitalized child, some form of outlet in play is essential.

Most hospitals have playrooms for patients. These offer children an opportunity to interact with one another in a way similar to their play with friends at home. In hospital playrooms, children may relax and become less fearful and better able to cope with their feelings about hospital equipment, medical procedures, and medical personnel. They may act out their concerns in play and thus deal with them in their own way.

Playroom personnel are often trained professionals with backgrounds in psychology, special education, childhood development, social work, nursing, or recreational therapy. As part of the treatment team, they are in a position to alert other caregivers and parents about concerns the child may be able to express only through play.

If the child is confined to bed and unable to go to the playroom, recreational therapists or child life workers may pay bedside visits. A child life worker is responsible for making the hospital and treatment experience less intimidating for the child by coordinating play therapy, schoolwork, and other activities.

Playrooms may also be equipped to provide outlets for the energies of older children and adolescents who may enjoy taking part in crafts of playing games appropriate to their ages. Video games and tape players for use in the playroom or their own rooms are popular with teens.

Hospitalization threatens the growing sense of independence in older children. The young person is taken to the doctor, taken to the hospital, given treatment. This role is passive rather than active. The lack of independence resulting from hospitalization and cancer treatment is particularly displeasing to the adolescent, who may frequently and loudly protest the forced dependence. It is not uncommon for adolescents to refuse treatment, break hospital rules, miss outpatient appointments, or undertake activities against the doctor's orders. Besides rebelling against the feelings of dependence, teenagers may be acting on the normal adolescent resistance to authority figures and reluctance to appear different from peers outside the hospital. Some hospitals have responded by relaxing certain rules so teenagers can dress in street clothes whenever possible and have visits from their friends. Hospitals may also fill the oncology ward's refrigerator with their patients' favorite foods. Parents can help by allowing the adolescent a share of the responsibility for his or her own care and by respecting the need for independence and privacy, hard as that may be under the circumstances. But more than anything else, your teenager needs to know that you are there if you are needed and that you can be relied on for honest, dependable answers.

Surgery

For many solid tumors, surgery is the primary and most effective treatment. For very large tumors, radiation or chemotherapy is often used before surgery to reduce the size of the tumor, make surgery safer for the patient, and lessen any physical or functional defects.

The young person facing surgery is likely to be afraid. To counter some of that fear, many hospitals prepare patients for surgery by letting them visit the operating and recovery rooms, where they can meet and talk with the people who will be present during the operation. These people explain what they will be doing and how they will look. They might, for instance, bring along a surgical mask and put it on for the younger child. This advance preparation can at least ease the shock and accompanying fear of the sterile operating room, strange equipment, and uniformed, masked personnel.

In addition, the patients should be encouraged to discuss their feelings and fears concerning surgery. Young people commonly worry about the anesthesia, whether there will be a lot of pain, how their bodies will be changed, and whether their parents will be there when they wake up. If an internal organ has been removed, some children feel a lack of wholeness afterward. Amputations for bone cancer, primarily osteosarcoma, may produce similar feelings. Amputation also means the young person must accept and learn to use an artificial limb.

Your child will have questions about the surgery, and these must be answered as honestly as possible, because the child may feel betrayed if what you said does not match up with what actually happened. You will want to learn as much about the operation as possible. The surgeon and other members of the treatment team can help you. If you wish, they may be able to arrange for your child to see and talk with another young person who has had the same type of surgery and is doing well. If a limb must be removed, the center's staff might show the child a prosthesis. If appropriate, your child may begin to practice walking with crutches even before amputation of the leg makes crutches temporarily necessary.

Chemotherapy

Chemotherapy is treatment with anticancer drugs. These drugs can be given orally (pills or liquids) or by injection. There are several types of injections: into a muscle (intramuscular, or IM), into a vein (intravenous, or IV), into an artery (intra-arterial), or into a cavity (intracavitary). Doctors also inject anticancer drugs into the spinal fluid (intrathecal, or IT) to treat brain tumors and to prevent central nervous system disease in leukemia. Often, special devices, such as catheters and pumps, are used to help deliver the drugs.

Insertion of the IV needle may be painful and, once in the vein, the drugs may cause an uncomfortable burning sensation. If the drug leaks from the vein, it may severely burn the skin, so care must be taken to make sure the IV line is securely in place, and the nurse or doctor must act immediately if the needle comes out of the vein.

Injections are generally given by physicians or nurses, but pills may be given at home. Taking chemotherapy pills can sometimes be a problem with younger children, but the tablets can be broken into smaller pieces for swallowing or powdered and mixed with apple sauce, jam, or custard. Older children, particularly adolescents, may wish to be responsible for taking and keeping track of their oral medication(s). However, it is still important for parents to be familiar with the medications and check to be sure they are being taken correctly.

Whether you or your child is responsible, you may want to develop a system for keeping track of when medications are taken. Marking a special calendar is one way of doing this.

Chemotherapy and Its Side Effects

Once in the bloodstream, chemotherapeutic drugs are taken up by cells such as breast cancer that divide rapidly. In the cancer cell, the drugs act by interfering with the duplication and growth of the cell, primarily by preventing it from dividing or depriving it of a substance it requires to function, and the cell is eventually destroyed. Anticancer drugs can affect not only cancer cells but also other rapidly dividing normal cells such as those in the gastrointestinal tract, bone marrow, hair follicles, and reproductive system. Because of this, unwanted side effects of the treatment can and often do occur. Most side effects, however, are temporary.

One common side effect of chemotherapy is the reduction of the bone marrow's ability to produce the normal amount of blood cells. This may put your child at greater risk for anemia (if significantly fewer red blood cells are being produced), bleeding (if production of platelets is down), or infection (if the white cell count, particularly that of the neutrophils, is low). Doctors use colony stimulating factors (CSFs), hormone-like substances that regulate the production and function of blood cells, to promote the growth of infection-fighting white blood cells. Using CSFs lessens the risk of infection in patients with a low white blood cell count as a result of chemotherapy. In general, you or your child should be particularly alert to any signs of infection, bruising, or bleeding and notify your physician if they occur.

Many side effects from anticancer drugs are possible, and the following points are good to keep in mind:

1. Most side effects can be lessened by taking appropriate measures before, during, and after chemotherapy. (See the following section for how to control side effects.)

2. Side effects vary in severity and type from person to person and treatment to treatment. Your child will not necessarily have the same reactions as another child, but it is important for you to be aware of those problems that occur commonly so you can recognize them early.

3. Most side effects are reversible and will improve after the drug is stopped. Some, such as hair loss and bone marrow depression, may lessen or disappear even without discontinuing chemotherapy.

4. Side effects of chemotherapy may be classified as common or uncommon and as acute (immediate) or delayed (days to weeks after chemotherapy).

Common acute side effects:

• Nausea and vomiting
• Pain and burning at injection site
  
  Less common acute side effects:
  
• Allergic reactions (hives; rash; swelling of eyelids, hands, and feet; shortness of breath)
• Drug extravasation (leaking of drug out of vein into skin)

Common delayed side effects:

• Hair loss
• Mouth soreness and ulcers
• Constipation (especially with the drug vincristine)
• Bone marrow depression (low blood counts)

Uncommon delayed side effects:

• Jaundice (yellow tint to skin and eyes due to liver problems)
• Hemorrhagic cystitis (bloody urine due to bladder irritation-especially with the drug cyclophosphamide)
• Mental or nervous system changes (lethargy, tiredness, lack of coordination)

Each drug has the potential of producing its own side effects. Your doctor can tell you which ones your child is most likely to experience.

5. Daunorubicin or its chemical cousin, Adriamycin, may cause heart damage if the cumulative dose over time exceeds certain levels. Your physician should keep a careful record of the cumulative dose and should warn you if your child passes the usual limits.

6. Chemotherapy may cause some long-term side effects in several body organs. The physician can tell you more about these in relation to your child's specific care and treatment.

Controlling the Side Effects From Chemotherapy

Certain side effects, although not dangerous, are bothersome, and you can try to avoid or control some of these through specific measures:

1. Constipation from vincristine: Encourage increased consumption of fluids and roughage (juices, fruits, vegetables, bran cereals) starting the day before injection and continuing for a week. If the child does not have a bowel movement for a considerably longer period of time than is usual, contact your physician. If constipation is a common problem, the regular use of a stool softener may be necessary while the child is on vincristine.

2. Nausea and vomiting: Caused by several drugs, can often be relieved and sometimes prevented by certain medications. Unfortunately, no perfect drug exists to prevent nausea and vomiting. Those that are effective are most helpful if given before chemotherapy. If these symptoms are marked, ask your physician about prescribing medication to counteract them.

3. Heartburn and stomachache from prednisone and dexamethasone: To prevent this, give 1/2 glass of milk or 1 or 2 tablespoons of an antacid with each dose.

4. Mild to severe mouth soreness is caused occasionally by several drugs (e.g., methotrexate, Adriamycin): Good oral hygiene is important during this period. Many people use special mouth rinses to ease the discomfort. (See the discussion of mouth care in "Common Health Issues" for more information.) No particular regimens are known to prevent mouth soreness from occurring.

5. Hair loss from vincristine, Adriamycin, methotrexate, cyclophosphamide, etc.: This will occur in varying degrees in each child, depending on which drugs and which schedule of drugs are received. There is no way to prevent hair loss, short of discontinuing medication. The hair will grow back, but regrowth may take months. The new hair may be different in color and texture. In the interim, emotional stress exists, especially in teenagers. If marked hair loss appears to be occurring, your child may want to consider wearing a wig. The wearing of a wig will not hamper hair regrowth. Caps or scarves may also be worn.

6. Tissue burns from vincristine, daunorubicin, or Adriamycin leaking at the site of injection: Any swelling, redness, or pain occurring during an injection or up to a few days afterward should immediately be brought to the attention of the doctor or nurse. Prompt treatment may be necessary to prevent a severe burn and ulceration of the skin.

7. Hemorrhagic cystitis (irritation and bleeding from the bladder) from cyclophosphamide: The likelihood of this occasional side effect may be reduced by seeing that the drug does not rest in the bladder for a long time. This is best done by giving the drug early in the day and seeing that urination is increased by encouraging your child to drink plenty of fluids throughout the day (thirst cannot be relied on). This will assure elimination of the drug from the bladder. The amount of liquids to be given depends on the child's size, so discuss this with your physician. This complication may occur shortly after the drug is given or show up weeks or months after the patient receives cyclophosphamide, so pink or bloody urine occurring at any time after therapy should be immediately reported to the doctor.

8. Some drugs increase sensitivity to the sun: A complete sunblocking lotion containing PABA (check the product's list of ingredients) should be used to prevent burning.

Finally, it is helpful to discuss with your physician any of the listed side effects and any other changes that you observe in your child.

Radiation Therapy

Radiation therapy is treatment with high-energy x-rays. High levels of radiation can kill cells or keep them from growing and dividing. Radiation therapy is used to treat cancer because cancer cells are growing and dividing more rapidly than many of the normal cells around them. In addition, most normal cells appear to recover more fully from radiation effects than cancer cells.

Radiation may be used alone, in combination with surgery or chemotherapy, or both. There is no pain or discomfort during the treatment. It is much like having an ordinary x-ray taken, except that the child needs to hold still for a few minutes longer. In some cases, young children need to be sedated in order to hold still for the radiation treatment. You will not be allowed in the room during treatment, because this would expose you to needless x-rays. Younger children may find it frightening to be left alone in the room during radiation therapy. If you accompany your child to treatment, it may be reassuring to explain that you are just outside the room. In some hospitals, closed-circuit television or viewing windows allow you to watch your child receive treatment, and in these cases, the child may feel easier knowing that you can see him or her all during the treatment. Most radiation departments are willing to give you and your child a tour of the treatment area before the first treatment. During this time, the technologist will explain the machines. A trip to the radiation therapy room ahead of time may also help quiet fears about the equipment, especially its large size.

Before therapy is started, a physician specializing in radiation therapy will talk with you and explain the details of the treatment. The physician will also use dye to mark the area to be irradiated. Once in place, this dye should not be washed off for the duration of the treatments, because it will be used as a guide for aiming the radiation. While radiation therapy is being received, soap or lotion should not be used on these lines or within the radiation field, where the skin will become tender. The area should also be kept dry.

Areas of the body not being treated are often protected from radiation by special shields made of lead.

Side Effects of Radiation Therapy and Controlling Them

Your child will not be radioactive during or after radiation therapy. Neither you nor anyone else need fear contact with the child. Among the real side effects of treatment, which vary according to the site receiving the radiation, are:

1. Skin damage. The skin in the treated area may be somewhat sensitive and therefore should be protected against exposure to sunlight and irritation. During treatment, it should not be exposed to sunlight. After treatment is completed, the skin will still be sensitive, and a sun-blocking lotion containing PABA should be used to prevent burning. If the head is affected, soft hats and scarves may be worn. Your physician may also prescribe baby powder or cornstarch, an antibiotic ointment, or steroid cream to relieve itching and pain and to speed healing. Nothing, however, should be applied to the treatment area without the recommendation of the person in charge of the treatment.

2. Sore mouth (if the head and neck are within the irradiated area). Your physician may prescribe a mouth rinse, and the hints on mouth care provided in "Common Health Issues" will also help.

3. Hair loss. Hair is frequently lost from the area receiving the radiation therapy. This loss is usually temporary, with hair growth beginning about 3 months after the completion of treatment. Initial adjustment to even temporary hair loss can be difficult, but after a time, children are able to play, work, and go to school without undue embarrassment. Some will want to wear a wig, cap, or scarf.

4. Nausea, vomiting, and headaches. A few children have these symptoms following radiation therapy to specific sites, such as the head or abdomen. These problems may last for about 4 or 5 hours and can be relieved by medicines prescribed by your doctor. In terms of diet, small, frequent meals are recommended. You may want to see that your child eats 3 to 4 hours before treatment.

5. Diarrhea after radiation to the abdomen (or pelvic area). This condition usually responds to simple measures such as nonprescription drugs or medications prescribed by your doctor. A low-residue diet avoiding fresh fruits, vegetables, and fried foods may also help. Occasionally, treatment will have to be suspended until the symptoms subside.

6. Late effects. Following irradiation to the brain and/or central nervous system, some children seem to be drowsy and need more sleep. This symptom may begin at various times, even as late as 5 to 7 weeks after therapy has been completed. It usually lasts about 5 to 10 days. Several days before the drowsiness occurs, the child may lose his appetite, have fever or headache, have nausea and vomiting, and be irritable in general. This is a temporary condition; nevertheless, it is important to report such symptoms to your physician. Other post therapy symptoms your doctor will want to evaluate are dizziness, sight disturbances, increased appetite, and stiff neck. None of these may occur, but if they do, you should contact the physician.

7. Long-term effects. Research suggests that radiation therapy to the head may affect intelligence and/or coordination, depending on several factors, including the age of the child at the time of exposure. In some cases, growth may be affected. Research also points to the increased possibility of developing a second tumor in an area treated with radiation. Your child's physician or radiation therapist can tell you more about these long-term effects in relation to your child and the treatment.

New Treatments

The search for new and more effective drugs to treat cancer is a continuing one. Each year, thousands of drugs are tested in experimental animals for activity against cancer. The most promising of these are further studied to determine whether they might be safe and effective for human use and to establish the proper dosage.

Newspaper and magazine reports of such research can be unintentionally misleading. A so-called new drug "cure" may refer to an agent that is effective against animal leukemia and has not yet been tested in patients. Or it may be a drug with limited usefulness in one particular type of cancer or in cancer at one particular stage. If you have any questions, discuss such reports with your child's physician, who is in the best position to evaluate them.

Some parents are concerned that if a cure for cancer is found in one hospital, it will not be known in another. Actually, the medical world is relatively small, and in this age of rapid communications, the discovery of a successful new treatment method will become generally known almost immediately.

Unconventional Methods of Cancer Treatment

Unusual remedies and approaches to cancer treatment often achieve public notoriety. As the parent of a child with cancer, inevitably you will hear of these yourself or have them brought to your attention by others. Patients, particularly older ones, may also hear of such treatments.

These treatments may involve unusual forms of therapy or strict dietary regimens that are reported to cure cancer. As a group, these treatment techniques have not been tested in the same strict method as have treatments employed by your physician. Reports of unconventional cures seldom provide enough information to compare their effectiveness with that of more conventional therapies.

The guarantee of cure these treatments offer may seem attractive when judged against the difficult treatment course of conventional therapies and the fact that your physician cannot absolutely predict the results of that treatment. If you develop an interest in an unconventional treatment or have any questions, discuss it with your physician, who should be able to provide or direct you to relevant information. The treatment team's primary concern is that your child receive the most effective treatment possible. If some magical, easy cure for cancer existed, caregivers would be the first to make it available.

Because many people have heard of these alternative methods of cancer treatment, you, or occasionally the older patient, may find yourself in the position of defending your decision to follow conventional treatment methods. This can be a frustrating situation and place a burden on you during an already stressful time. It is important to remember that suggestions are usually well intentioned and that they come from those who are not well informed about treatment advances. The best way to deal with this may be to provide these people with more information and make it clear that you appreciate their interest but that you feel your child is already receiving the best treatment available.

Next