This Battle Which I Must Fight
Cancer in Canada's Children and Teenagers

ABOUT TREATMENT

WHAT ARE THE MEDICAL NEEDS OF CHILDREN AND TEENAGERS RECEIVING CANCER TREATMENT?

Nausea and vomiting are frequent treatment side effects which have been lessened by the introduction of more effective anti-emetics (drugs that prevent vomiting). Less invasive local anesthetics, such as topical creams rather than needles, have reduced the pain and unpleasantness of many tests and treatments. Anti-anxiety medications and sedatives ease the anticipatory anxiety and pain frequently experienced with procedures such as bone marrow aspirations and spinal taps. Central lines (indwelling venous catheters) reduce the number of needle punctures required for blood sampling and intravenous treatment.

Young people with cancer, particularly those receiving intensive treatment, may need nutritional support with high calorie foods. If the child or teenager is unable to take in enough calories by mouth and the bowel is working well, feedings may be given directly into the stomach through a tube. If the bowel is not working well, then nutrition is often given through the intravenous administration of fluids, called total parenteral nutrition (TPN), that contain fat, sugar, protein, minerals, vitamins and salts. Sometimes they can be given at home allowing earlier discharge from hospital.

Most chemotherapy drugs cause a temporary lowering of the blood cell counts. When these counts are low, children and teenagers with cancer have an increased chance of acquiring an infection and greater difficulty fighting it. They may bleed more easily and sometimes require red blood cell or platelet transfusions. A child or teenager who develops a fever or major infection may be admitted to hospital for intravenous antibiotic therapy.

Episodes of infection can interfere with the scheduling of treatment. Children and teenagers receiving chemotherapy are often given an antibiotic to help prevent infections; this is called prophylaxis. In specific medical situations, use of G-CSF can shorten the period of increased susceptibility to bacterial infection and prevent delays in starting the next course of chemotherapy. G-CSF is given by injection and works by speeding up the production and maturation of neutrophils (white blood cells that fight bacterial infections) in the bone marrow, and hastening their entry into the bloodstream.(82)

The medical problems that can arise may place great demands on the family. Since parents provide much of their child's care, support for families also helps the child. Some ways of supporting family members are presented in a subsequent section of this book.

WHO IS INVOLVED IN THE HOSPITAL CARE OF A YOUNG PERSON WITH CANCER?

The treatment of cancer in children and teenagers is complex. Physicians, nurses, therapists (occupational, physical and respiratory), technicians, dietitians, pharmacists, child life therapists, social workers, psychologists, teachers, volunteers and spiritual counsellors work together to maximize a young patient's physical and emotional well-being. Although children and teenagers with cancer may receive some of their care in clinics that are close to home or by physicians in their community, treatment planning and co-ordination, as well as surgery, radiation therapy and complex chemotherapy usually take place in a pediatric oncology (cancer) centre.

During the phases of diagnosis and active treatment, young patients and their parents spend a great deal of time in the treatment facility. The care of the young person becomes a partnership between the family and the treatment team, and often close, long-term bonds are formed. Parents expect the professionals to possess both technical expertise and compassion, and the treatment team relies on parents to provide information about their child and to participate as fully as they can in decision-making and care.

Many groups and organizations contribute immeasurably to the care and support of families experiencing cancer. A compilation of such groups is presented later in this book.

WHAT IS THE LIKELY OUTCOME?

Mortality rates from childhood cancer have fallen steadily since the 1960s.(17,33)The reduction in mortality has been most pronounced among children with leukemia or lymphoma (Figure 7).

Over 70 percent of Canadian children and teenagers diagnosed with cancer between 1985 and 1988 were alive five years after diagnosis. These figures vary by age and by the type of cancer and are discussed in more detail in the sections describing specific cancers.

IS THERE A ROLE FOR UNPROVEN TREATMENTS?

Increasing success in the treatment of children and teenagers with cancer is attributed to the rigorous application of scientific methods by international teams of researchers. The scientific approach rests on unbiased treatment and assessment of results. Randomization and statistical techniques safeguard against falsely declaring that one treatment is better than another. In this book, the expression unproven treatments refers to remedies - largely physical rather than psychological or spiritual - that are acclaimed as cancer treatments, but have not been systematically studied; their only evidence is anecdotal reports or "success stories". These remedies should not be confused with complementary therapies, such as guided imagery, and art, relaxation and music therapies, that can be important aids to medical treatment; nor should they be confused with new drugs being tested in clinical trials.

Canada's food and drug regulations prohibit the marketing of cancer remedies that have not been scientifically tested and approved. Herbal and dietary supplements, frequently available through health food stores, cannot be labelled as cancer remedies without sufficient scientific evidence to support the claim. Canadians often obtain unproven cancer remedies out of the country.

Unproven treatments are sometimes referred to as alternative, holistic, natural, non-toxic, metabolic, immuno-augmentative, unconventional or by other names.(86) Generally speaking, they have arisen from beliefs that man-made toxins from food additives and environmental pollution are the primary causes of diseases such as cancer, and that cleansing the body of these substances and/or boosting the body's immune system through dietary intervention can halt these diseases. Some proponents of unproven treatments believe that tumours thrive in the absence of oxygen and are killed by substances that increase the oxygen supply to the site of the tumour. Often these beliefs inappropriately place much of the responsibility for getting the disease and for curing it on the child or teenager who is ill and/or on his or her parents.(57)

These theories have given rise to many unproven approaches such as fasting, enemas of coffee, hydrogen peroxide or soap suds, special diets or large doses of vitamins, minerals, enzymes, glandular extracts, herbal compounds or shark cartilage, and administration of naturally-occurring chemicals such as Laetrile, hydrogen peroxide or urea. Some unproven treatments involve the inappropriate use of drugs such as Bacillus Calmette-Guérin (BCG), gamma globulins and interleukins, that are under investigation as treatments for cancer or other diseases. Sometimes small doses of standard chemotherapy agents are administered under the false claim that only small doses are needed because other treatments, given along with them, enhance their effect. Other types of unproven treatments include exposures to coloured lights, bio-electrical stimulation or magnetic devices, and psychosurgery, a technique offered in the Philippines that involves sleight-of-hand illusion to simulate the surgical removal of a tumour. A detailed discussion of the large number of unproven treatments cannot be presented in this book, but many are described more fully in the references included in this section.

Because unproven therapies have not been scientifically tested, reliance on them entails unknown risks. The American Cancer Society has investigated many unconventional treatments and has produced reports that are included in the references.(3-8) When the "success stories" were investigated, it was discovered that many patients were also taking conventional treatments, could not be located, were unaware that their cancer was progressing, or had died. Thus, the evidence given as support for the treatments was flawed. Furthermore, the dangers of certain unproven therapies were found to be numerous and included life-threatening injury and infection, delay in seeking appropriate medical treatment, and rejection or discontinuation of standard therapies that may have cured the disease.

The promise of "cure" makes people vulnerable to the claims of unproven treatments. Not only can unproven therapies be very expensive, but also, people who use them may take on too much responsibility for the disease; they may feel like a failure should the cancer continue to progress. This self blame can be very damaging.

Parents may seek unproven treatments for several very understandable and legitimate reasons. In their desire to do everything they can for their child, parents often feel that unproven therapies can assist or enhance conventional therapy, that they are a way of avoiding the painful or distressing side effects of proven treatments, or that there is no harm in trying all options. Failure of conventional therapy to cure the disease or mistrust of the "medical establishment" can lead to sheer desperation and the wish to maintain hope and control, especially when dealing with terminal illness. Practitioners of unproven methods are often very optimistic. It is natural to want to seize this optimism, especially when conventional treatment appears to have little to offer. Also, parents may either believe the theories put forth by proponents of unproven therapies or be confused by the pseudo-scientific language that sounds very similar to the detailed information given to parents about standard medical treatment.(113)

Conventional treatment of children and adolescents with cancer is intended to achieve a cure. As such, it is aggressive and can cause unpleasant side effects that are distressing and frightening to the child and parents. However, it is important that parents not become alarmed to the extent that they delay or discontinue these treatments and resort to potentially harmful remedies. Concerns about treatment should be raised with the staff treating the child, as pain, nausea and other side effects can be controlled.

The discussion presented here is not intended to suggest that there is nothing helpful that patients and their families can undertake themselves. Parents and older children should participate as actively as possible in treatment decisions. Also, conventional treatment may be optimized and well-being enhanced through a range of techniques that include relaxation, massage and meditation, to mention only a few. These approaches can promote a sense of control that enhances psychological health; whether they extend life, however, or contribute to cure has not been scientifically tested. Counselling and treatment staff at the pediatric oncology centre often can help parents and children find approaches that work best for them. Medical staff are becoming increasingly aware that some complementary treatments help, and parents want to know about them.

Because it is often difficult to distinguish possibly helpful from potentially harmful options for self care, parents, and sometimes older children, who may be considering an unproven treatment should ask questions about the evidence for its effectiveness. Most pediatric and adult cancer centres have collections of resource materials that patients and families can access and many have librarians who can assist families to search the literature and find information. Treatment staff at the cancer centre or a representative of one of the support groups listed in this book may be very knowledgeable about some unproven treatments and can help parents who want to make an informed decision.

If an unproven treatment is used, it is crucial that this information be shared with treatment staff. Where indicated, medical staff usually encourage continuation of conventional treatment while other approaches are being tried. They will also want to continue to care for the child even if conventional treatment is discontinued. An adverse reaction to any treatment can occur, and if all potential causes of the reaction are not investigated, appropriate steps to manage it may not be taken. The frequent use of unproven treatments along with prescribed medical treatments requires that they be evaluated in a rigorous and controlled fashion so that, at the very least, those that are potentially harmful can be avoided.

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