Protocols for clinical trials require specific follow-up schedules. For instance, your child may require follow-up every 3 months for a period of time (usually 1–2 years), then every 4 to 6 months for a while, and then annually. Follow-up might include:
- Physical exams by primary treating doctor
- MRI scans
- Blood tests (complete blood count and hormonal tests)
- Neuropsychological testing yearly or biyearly
If your child was not on a clinical trial, find out from the oncologist what the required schedule will be and where the appointments will take place. Make sure your child understands that, after treatment ends, doctor appointments, MRI scans, and blood draws will still be an occasional necessity. Follow-up care for possible late effects of treatment is a separate process.
Possible late effects
Shawn is a year off treatment and I find myself letting go of the bad memories more and more. They are just fading away. What I am left with is awe, admiration, and amazement that my son handled all of the hardships of treatment and survived. He’s very determined and strong-willed, and I’m so proud of him. When people say to me, “Oh, you were so strong to make it through that,” I respond, “All I did was drive him to the appointments; he did the rest.”
This experience has really changed me and my entire family. My marriage is much better, my other sons are stronger and closer to us, and Shawn has shown us all how tough a little kid can be. We take each precious day, one at a time, and try to get the most out of it. I so appreciate life and my family.
At diagnosis, parents do not know the price their child will ultimately pay for reprieve from the brain or spinal cord tumor. Short-term effects may be discomfort, seizures, weakness in an arm and/or leg, and school absences. Long-term effects range from none to severe. These can include subtle or pronounced 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.
Our daughter was diagnosed with medulloblastoma when she was 10 months old. She had surgery and 2 ½ years of chemotherapy. She needed two second-look surgeries when MRIs showed a shadow. Both times they found only scar tissue, no tumor. She had minor delays in motor development that a short course of physical therapy resolved. Other than that, she has no late effects. She is a normal, happy, giggling 13-year-old girl She talks on the phone a lot and likes Backstreet Boys. She is just wonderful and we all feel blessed.
Permanent weakness of an arm, leg, or entire side of a body can occur from the tumor itself or from swelling related to the treatment. Weakness of the muscles of the eyes and face or those involved in swallowing can also occur from the tumor and treatment. Physical, occupational, and speech therapy may be necessary for months or years. These services should be provided through the child’s Individualized Education Program (IEP) at school (see Chapter 18, School). As the child gets older, an exercise program can be established with a physical therapist, occupational therapist, or personal trainer. Insurance companies are often reluctant to pay for long-term rehabilitation, so it is helpful for parents to request a case manager or advocate to help them obtain these services.
School entry and reentry for children who have spent months or years receiving treatment is difficult. Physical changes make it hard for some children who had brain or spinal cord tumors to socially fit in at school. To compound matters, side effects and late effects of the treatments used for brain or spinal cord tumors often include decline in academic functioning. A decrease in IQ is a side effect for children who received radiation treatments and sometimes for those who deal with seizures. Difficulty with memory or changes in attention span, verbal fluency, and speed of information processing can also affect children.
It is imperative that all children who received treatment for brain or spinal cord tumors receive neuropsychological testing to identify learning problems. The results of these tests can be incorporated into your child’s IEP. A neuropsychologist can also use the results of these tests to help adult survivors identify strategies to cope with learning issues. For further information, refer to Chapter 18, School.
My son was treated for medulloblastoma when he was 5 years old, and had posterior fossa syndrome after surgery. He was paralyzed on the right side, and had to switch handedness as a result. Between that and the vincristine, he has seriously impaired fine motor skills, despite years of occupational therapy. His handwriting is illegible, he is a slow typist, and he even has trouble buttoning buttons. He has poor reading comprehension, but he is an excellent auditory learner, so he has everything read out loud to him and a scribe for tests in school. He has slowed information processing, which means that he really has trouble thinking quickly when presented with new information. He learns well when he has time to think things through, but standardized testing is a challenge for him. That said, he is a college freshman this year and with a lot of support, he is taking a full course load at a 4-year college.
Hormonal problems occur in children with pituitary and hypothalamic tumors and as a late effect of radiation to the brain. The following are types of hormonal problems that your child may develop:
- Growth hormone deficiency, resulting in short stature
- Deficiency in hormones required to develop normally in puberty
- Thyroid hormone deficiency
Long-term follow-up should include a visit to an endocrinologist with experience treating survivors of childhood cancer, who can screen for these late effects. Hormones (pills or injections) can be given to your child to help correct any deficiencies. It is essential that problems with growth and pubertal hormones be identified early, because treatment needs to begin when your child is young. Thyroid hormone replacement (a daily pill) can start at any time. If your child is fatigued or has decreased energy, make sure the doctor tests thyroid functioning.
Decrease in hearing (with high-frequency hearing lost first) occurs most often in children treated with cisplatin. The hearing loss is sometimes worse if the child receives radiation therapy as well. Audiograms (hearing tests) are done at frequent intervals while the child is receiving cisplatin and should be part of the long-term follow-up upon completion of treatment. Children with hearing loss are often unable to filter out background noise. This presents a problem for children in the classroom, where background noise is common. Your child’s audiologist may be able to recommend devices that will help your child. Hearing aids are sometimes needed for children with significant hearing loss.
We are lucky to have good insurance for hearing aids and have replaced them every 3 years with the best technology available. The aids Josh uses now are incredible— they operate independently and communicate with each other via WiFi. Each aid has four independent speakers that evaluate the surrounding environment and work together to modify amplification. Now also compatible with smartphones, the aids can serve as ear buds when Josh is enjoying his music or watching a video. This generation of hearing aids has made the FM system obsolete. Hearing is such an important part of development that I consider quality hearing aids to be a necessity, not a luxury. They were expensive ($6,000), but in my mind were worth every penny.
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 control over some of their future.
If your child was diagnosed before she received all her immunizations, ask the neurooncologist when she should resume the regular schedule for immunizations. If your child had one or more peripheral stem cell transplants, then all immunizations may need to be repeated. Your child’s neuro-oncologist will order blood tests to determine which immunizations need to be repeated.
Risks of smoking
My doctor said to wait a year before beginning to catch up on shots. It was nice for her to get a long break before any more pokes.
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:
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.
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 the administration of many chemotherapueutic drugs may cause infertility, many babies have been born to long-term survivors of brain and spinal cord 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. 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.
Table of ContentsAll Guides
- 1. Diagnosis
- 2. The Brain and Spinal Cord
- 3. Types of Tumors
- 4. Telling Your Child and Others
- 5. Choosing a Treatment
- 6. Coping with Procedures
- 7. Forming a Partnership with the Treatment Team
- 8. Hospitalization
- 9. Venous Catheters
- 10. Surgery
- 11. Chemotherapy
- 12. Common Side Effects of Chemotherapy
- 13. Radiation Therapy
- 14. Peripheral Blood Stem Cell Transplantation
- 15. Siblings
- 16. Family and Friends
- 17. Communication and Behavior
- 18. School
- 19. Sources of Support
- 20. Nutrition
- 21. Medical and Financial Record-keeping
- 22. End of Treatment and Beyond
- 23. Recurrence
- 24. Death and Bereavement
- 25. Looking Forward
- Appendix A. Blood Tests and What They Mean
- Appendix C. Books and Websites