In the past, most survivors of childhood cancer were sent back to their local doctors after follow-up for the recurrence of the cancer was complete. But as the population of long-term survivors grew, it became apparent that these young men and women often faced complex medical, psychological, and social effects from their years of treatment. As a result, some institutions started survivorship clinics to provide a multidisciplinary team to monitor and support survivors. The nucleus of the team is usually a nurse coordinator, pediatric oncologist, pediatric nurse practitioner, social worker, and psychologist. The team also includes specialists such as endocrinologists and cardiologists.

Yearly appointments with follow-up programs usually include a review of treatments received, counseling about potential health risks (or lack thereof), and treatment-specific diagnostic tests (e.g., echocardiograms or hearing tests). Follow-up clinics not only provide comprehensive care for survivors, they also participate in research projects that track the effectiveness of and side effects from various clinical trials. In addition, the follow-up clinics act as advocates for survivors with schools, insurance companies, and employers.

If your institution does not provide comprehensive, long-term, survivorship care, you can find a list of survivor programs at www.acor.org/ped-onc/treatment/surclinics.html. Many survivors travel to comprehensive programs for their yearly follow-up visits.

Possible late effects

At diagnosis, parents do not know the price their child will ultimately pay for reprieve from the tumor. Short-term effects are many, but they come and then go. Long-term effects range from none to severe. These can include physical disabilities, learning disabilities, an impaired endocrine system, hearing loss, altered bone growth, infertility, and an increased risk of second cancers.

It is important to know the possible risks based on the treatment your child received. You can then store this knowledge in the back of your mind. As one mother said, “I hope for the best and I deal with the rest.” For detailed information about possible late effects from childhood cancer, read Childhood Cancer Survivors: A Practical Guide to the Future, 3rd edition, by Nancy Keene, Wendy Hobbie, and Kathy Ruccione.

Healthy choices

An essential aspect of survivorship is making healthy choices. Good health habits and regular medical care help protect survivors’ health and lessen the likelihood of late effects from cancer treatment. A sizable number of adult cancers are linked to lifestyle choices. Eating a healthy diet, staying physically active, using sunscreen, avoiding excessive alcohol consumption, maintaining a healthy weight, and not smoking all help keep survivors healthy and cancer-free. To protect survivors from injury, it is also important to wear bike or motorcycle helmets, use seat belts, and call a cab if the person driving has had too much to drink. Survivors have little or no control over their genetic make-up or the environment in which they live, but making healthy choices about how to live the rest of their lives gives them some control over their future.

Immunizations

If your child was diagnosed before she received all her immunizations, ask the oncologist when she should resume the regular schedule for immunizations. If your child had one or more stem cell transplants, then all immunizations may need to be repeated.

Risks of smoking

Teens need continuing counseling about problems associated with smoking cigarettes or engaging in other high-risk behaviors. The combination of effects from treatment and smoking increases the chance of heart disease; heart attack; congestive heart failure; stroke; cancer of the mouth, throat, and lungs; and death from sudden cardiac failure. An article about survivors and smoking in a youth newsletter ends with these words:

Safe sex

Every teen and young adult who has survived cancer should be counseled about safe sexual practices. Despite the prevalence of sexual messages in our culture, most teens and young adults are woefully underinformed about the facts. Even though some chemotherapy drugs may cause infertility, many babies have been born to long-term survivors of solid tumors. Survivors should not assume that they are infertile.

In addition, sexually transmitted diseases are of concern for anyone engaging in sexual activity. All sorts of diseases, some potentially fatal (e.g., hepatitis C, HIV/AIDS) and some not (e.g., genital herpes, genital warts, gonorrhea), can be transmitted through sexual intercourse and oral sex. One nurse practitioner at a large follow-up clinic stated: