In the past, most survivors were sent back to their local pediatricians after follow-up for the recurrence of the leukemia 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 DEXA scans). 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. Follow-up clinics also 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.ped-onc.org/treatment/surclinics. 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 survival. Short-term effects are many, but they come and then go. Long-term effects range from none to severe. These can include learning disabilities, an impaired endocrine system, osteonecrosis, neuropathy, 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.” If your child is seen at a survivorship clinic, they will conduct assessments based on the Children’s Oncology Group’s follow-up guidelines (available at www.survivorshipguidelines.org). 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. 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 avoid injury, it is also important that survivors 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 drugs they took to survive, 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. If your child had one or more stem cell transplants, then all immunizations will probably 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, and cancer of the mouth, throat, and lung. An article about survivors and smoking in a youth newsletter ends with these words:

If you’ve had cancer and your friends haven’t, they don’t face the same risks from smoking that you do. You’ve fought hard for your life. Don’t put it out in an ashtray.

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 leukemia. Survivors should not assume they are infertile.

In addition, sexually transmitted diseases are of concern for anyone engaging in sexual activity. All sorts of diseases (e.g., hepatitis C, HIV/AIDS, genital herpes, genital warts, gonorrhea, human papillomavirus [HPV]) can be transmitted through sexual intercourse and oral sex. One nurse practitioner at a large follow-up clinic stated:

I tell every teenager who comes through the door, regardless of their medical background, that I think he or she is too young to have sex, and I explain why. But then I say, in the event that you do choose to become sexually active, you always need to use a condom, and not just any condom. I tell them to only use a latex condom with a spermicide, which is the most barrier-protective. I explain that no sex is the only guarantee to avoid the many diseases out there, but a latex condom with spermicide offers the next best protection. And I really stress that this should be done whoever the partner is, and for whatever type of sex. So many teenagers think that diseases only happen to other kinds of kids.

Every survivor should have a discussion with the oncologist or nurse practitioner about when to get the HPV vaccine that prevents cervical cancer.