Emotional Roller Coaster
The end of cancer treatment is a day you have been dreaming about since you first heard that your child's diagnosis was cancer. "It's finally over. Now we can get on with our lives." But, many parents tell us that the reality is a little different. After months or years of support, reassurance, and problem solving from the doctors and nurses, suddenly you are on your own. Those regular visits—time-consuming, disruptive to life routines, and perhaps painful—also provided a feeling of reassurance. You knew that your child was being looked after and that someone was paying close attention to the cancer. When treatment ends, you may feel concern that the cancer may sneak back and no one will be watching. As the days, weeks, and months pass, that feeling subsides. For most children, the cancer is really and truly gone. Life resumes, new routines develop, school and friends again take center stage, and life without cancer becomes a reality.
Nevertheless, some patients and their families may live with painful reminders of the cancer. Your child may have long-term side effects and future health-related risks from the treatment. Some side effects are immediate, while others such as learning difficulties may not appear for two to five years. Still others, such as heart problems, may not appear for 10 years or more. And so, you may feel that even though the cancer is gone, it has left a huge mark. You may experience highs and lows, highs because your child's cancer was cured and lows if there are permanent losses. Doctors also worry about the effects that cancer treatment may leave. Much research is under way and long-term survivor clinics to study and address the needs of survivors of childhood cancer can be found all over the country.
Physical Growth Issues
One common concern for parents when their child has been treated for cancer is whether the child will grow normally. The answer depends on the treatment. Some treatments can injure the glands that produce hormones needed for normal growth and development. If your child does not grow as you or your pediatrician expect, tests can be done to see why. You may also want to see a pediatric endocrinologist who specializes in growth problems. Look at the drug(s) or radiation your child received for details of what to look for and how a growth-related side effect can be managed.
Sexual Development, Reproductive Outcomes, Health of Offspring
Side effects related to sexual development can be related to any kind of treatment. Radiation therapy to the brain may damage the hypothalamus and the pituitary gland, which can result in early puberty, especially in females treated at a very young age (under 4 years). If the dose of radiation is high (more than 4000 cGy), some children may lose their ability to make sex hormones, resulting in delayed or arrested puberty.
Boys
The testis is composed of two different types of cells; one type makes the male hormone testosterone and the other type makes sperm. While the cells that produce testosterone usually continue to function well after most forms of chemotherapy and radiotherapy (except if the testes themselves are directly in the radiation field), many chemotherapy drugs damage the sperm producing cells and therefore infertility can occur even with low doses of radiation therapy. Surgery to remove both the testicles will result in infertility—the inability to produce sperm—in addition to other symptoms such as absence of and change in sexual urge, which are related to low or absent levels of testosterone. While there are no specific treatments to increase sperm production, testosterone deficiency can be treated with hormones. Alkylating agents, especially high doses of cyclophosphamide (total doses greater than 6 grams) or chlorambucil (400 mg) almost always cause infertility. A high percentage of males treated with MOPP (mechlorethamine, vincristine, procarbazine, and prednisone) or CVP (cyclophosphamide, vincristine, and prednisone) are infertile. More information can be found listed under the specific chemotherapy drugs, radiation, or surgery your child had.
Girls
Unlike the situation in boys, when the ovaries fail to produce the female hormones estrogen and progesterone, or lose the ability to produce eggs, necessary for fertility, both are lost. Radiation to the ovaries may result in ovarian failure. Girls who have radiation to the abdomen and/or pelvis for Wilms' Tumor or Ewing's sarcoma, or total body irradiation before bone marrow or stem cell transplantation are all at risk for loss of ovarian function and infertility. In young girls, puberty may be delayed and secondary sex characteristics may not develop, while girls who are past puberty may stop having their periods. Generally, younger girls are better able to withstand the effects of chemotherapy on ovarian function. Most girls who are treated with chemotherapy will continue to have normally functioning ovaries, however, certain drugs such as busulfan, frequently cause infertility. It is important to be aware that some females who continue to have normally functioning ovaries after completing their cancer treatment may, nonetheless, be at risk for entering menopause at a younger age than females in the general population. Females treated with radiation to the pelvic region and/or high doses of an alkylating agent during their teenage years, appear to be at highest risk for an early menopause.
The symptoms related to the loss of sex hormone production (lack of breast development, loss of normal menstruation) can be treated with hormone replacement therapy. Unfortunately, there are no treatments currently available to restore fertility when the loss of eggs has occurred. More information can be found under the specific chemotherapy drugs, radiation, or surgery your child had.
School and Learning
Children treated for brain tumors, leukemia, and tumors of the head and neck may have problems with school and learning. These are more common after high doses of radiation. Math, memory, problem solving, attention span, and concentration may all be affected. Chemotherapy can also cause mild learning problems. Children who were less than six years old at the time of treatment are at greatest risk for these development issues. If treatment includes surgery on the brain, the effects depend on the area of the brain where the tumor was. Symptoms can impact writing, reading, memory, understanding of concepts and many other areas, some subtle, some obvious. More information can be found under the specific treatment.
Keeping a Record
It is very important to obtain complete treatment records. You should have and keep this record until your child is old enough to take over this responsibility. While your child was being treated, you may have known how much radiation he/she got or the names and amounts of chemotherapy drugs. As time passes though, you are likely to forget these details. However, late side effects are related to the type and amount of treatment along with your child's age during treatment, his/her sex, and your family history. Ask your health-care team to help you complete your child's treatment record. Make copies for you and your child as this record will be important for the rest of your child's life. It will help her/him access information about possible late effects and it will help doctors who were not involved in treating the cancer know what to look for.
