About the Future - This Battle Which I Must Fight: Cancer in Canada's Children and Teenagers

ABOUT THE FUTURE

WHAT IS THE LONG-TERM OUTLOOK FOR CHILDREN AND TEENAGERS WHO HAVE SURVIVED CANCER?

It has been estimated that, by the end of the decade, one of every 900 individuals aged 16 to 34 years will be a survivor of childhood cancer.(77) Fortunately, cancer survivors appear to have an amazing capacity to cope with and adjust to their situation. Nevertheless, a few will experience lifelong difficulties as a result of having had cancer and may require ongoing support in their efforts to live normal lives.(79,105)

Generally speaking, we know relatively little about the long-term outlook for cancer survivors in terms of their lifelong adjustment. Research into the extent and nature of long-term effects is ongoing. Most of the information we have relates to the physical impact of cancer and its treatment. For example, there is an ongoing small risk of recurrence of the original cancer, the original disease can leave the survivor with a permanent disability, side effects of treatment or the disease can appear months or years after treatment, and there is a small risk of developing a new benign or malignant tumour many years after completing treatment for the original cancer. Much of the literature on late effects deals with specific cancers and specific treatments. The research articles cited here are those that provide overviews rather than detailed material on specific late effects.(43,94,110)

A late effect is one that appears some time after treatment is complete. Late effects can occur in almost any tissue or organ of the body. The late effects of radiation therapy usually occur in or near the area of the body that received radiation therapy, while chemotherapy can cause late effects anywhere in the body. Many late effects can be treated or managed and leave no obvious long-term impairment.

The central nervous system is very susceptible to radiation therapy. One possible late effect of radiation therapy to the brain is the development of learning difficulties. Children treated as preschoolers or with higher doses are more susceptible than others. If school problems occur, their nature and severity can be assessed and appropriate resources used to help the child.(79)

Radiation therapy can also affect the hormone-producing structures on the undersurface of the brain (the hypothalamus and pituitary glands), as well as those in other areas of the body (the thyroid gland, testes, and ovaries). The hormones produced by these glands control bodily functions such as growth, metabolism, and the onset of puberty. Hormone production may be decreased by injury to these glands. Hormone deficiencies are treated by hormone replacement therapy.

The ovaries and testes are susceptible to certain chemotherapeutic agents, as well as to radiation therapy. For females, the possible side effects include infertility and early menopause. For males, the risks include a temporary or permanent decrease in sperm production, and less commonly, a decrease in the production of testosterone (the male sex hormone) if high doses of radiation therapy or chemotherapy are used.(79,114) Most cancer survivors remain fertile; however, women who received radiation therapy to the uterus as a child may experience a greater number of miscarriages and premature deliveries than the general population. This is thought to be the result of radiation damage to the uterus.(79) Fortunately, the likelihood of cancer and birth defects in the children of cancer survivors does not seem to be higher than the likelihood of these problems in the general population, unless there are other inherited predisposing factors. At an appropriate age, counselling about these issues is crucial.(49,95)

The heart muscle and lungs are susceptible to radiation therapy and certain chemotherapy drugs. Cancer survivors who are at risk for the development of heart and lung problems are monitored and appropriate medical treatment is instituted if problems arise.

Muscles and bones which are included in the radiation field will grow less than untreated muscle and bone. This may lead to asymmetry of the body. For example, one arm or leg may be shorter than the other. Special measures are taken during treatment planning to minimize risk for this problem. When leg asymmetry occurs, orthopedic devices such as shoe lifts may compensate for it.

Extensive surgery, such as amputation of a large portion of a diseased limb, is sometimes part of cancer treatment. In general, young people who undergo extensive surgery cope well and lead normal productive lives. Their tremendous desire to be normal, do normal things, and get on with life motivates them to find ways to overcome most obstacles, particularly if they are encouraged to do so. Sophisticated prosthetic devices (artificial limbs) allow participation in many athletic activities. Survivors with severe physical defects may have a more difficult psychological adjustment.(45,88) Generally speaking however, children and teenagers who have a good self-concept, body image and self-esteem adjust well, regardless of the degree of residual physical impairment. (11,69,141)

Rare side effects of radiation therapy and specific anticancer drugs include hearing loss, cataracts, scar tissue formation around the bowel, scarring of the liver, impaired kidney function, and inflammation and bleeding from the bladder lining. Certain chemotherapy drugs can injure the nerves in the hands and feet. Skin changes, including increased pigmentation, can also occur. Children who have received treatments which may produce these specific side effects are monitored, and appropriate medical treatments are prescribed when problems are identified.

Children and teenagers who have survived cancer are at increased risk of getting another cancer. It is estimated that their risk is 10 to 15 times that of same-age peers in the general population. All survivors of childhood cancer are not equally susceptible to the development of a second cancer. Specific initial cancers, treatments, and genetic predispositions are associated with an increased probability of developing a second cancer.(78)

Once active treatment is complete, some survivors and their families experience an ongoing uneasiness that has been termed the Damocles syndrome; they are never sure when the sword will fall.(46,62,64) They have a persistent dread that the disease will return. Thus the psychosocial consequences of having cancer as a child is an increasingly important aspect of follow-up care. Since early recognition and intervention can minimize or prevent many adjustment problems, one of the greatest challenges facing researchers is to develop measurements that accurately reflect the functioning and emotional well-being of childhood cancer survivors. (31)

Long-term follow-up clinics are being established to provide ongoing help and to collect information about the issues some survivors face long after active treatment is complete. Pediatric centres initiate the monitoring, which can be continued in follow-up clinics in adult centres.(61,108) Research has shown that survivors who do not have brain damage or learning difficulties as late effects achieve the same level of schooling as the general population. Most former pediatric cancer patients achieve adult life goals such as employment of their choice and marriage.(44,47,48)

With time, and sometimes counselling, most families recover from the strain of the cancer experience. Brothers and sisters of the cancer patient, who may have had to make many adjustments, often need to work out feelings of fear for their own health and overcome anger and jealousy over the perceived overindulgence and overprotection of their ill sibling.(116) Caring for a very ill child can strain even the best marriage; however, many parents report that their marital relationship improved as a result of developing better communication and mutual support throughout the cancer experience.(24)

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