Info for Parents – Medical
Info for Parents – Medical
Our Beyond the Cure program prepares survivors and their families for life after cancer
Your Child’s Medical Care After Cancer
When it’s time to celebrate the end of your child’s treatment, make sure you have all the information you need regarding follow-up care and late effects. First, your child will need a primary-care physician. Also, find out where to go for assessment and treatment of late effects.
Attending follow-up medical appointments is mandatory to optimize your child’s health. Your child (and you!) may feel anxious and fearful about going to the doctor, but your child’s continued good health depends on careful monitoring.
Below are some questions to ask about your child’s future medical needs:
- How often does my child need checkups?
- When do we see the oncologist and when do we go to the pediatrician or family-practice doctor?
- Does my child need to be seen by any specialists?
- What tests, if any, should be done at follow-up visits?
- Should my child have a bone-density test or take any special vitamins or medications to strengthen bones?
- Does my child need neurocognitive or neuropsychological testing?
- Should my child have tests for heart, lungs, eyes, ears or hormonal function?
- Can you refer my child to a long-term survivor clinic?
- What are the warning signs of relapse or secondary cancers?
- Are there known late term effects related to the treatments my child received?
- Are there any warning signs of related side effects?
- Should my child be on a special diet?
- What late-term dental effects may occur?
- What emotional changes should I expect?
- Will infertility be an issue for my child?
- At what point should I transfer my child’s care out of a pediatric setting?
In addition to oncology follow-up visits, your child should have a complete physical exam every year and a dental examination every six months. The doctor may also recommend that your child see specific subspecialists on a regular basis.
Long-term follow-up clinics provide the most comprehensive treatment for cancer survivors, but they are not designed to meet your child’s everyday healthcare needs. Because very few primary care physicians have training in evaluating the late effects of childhood cancer, you should look for one who is thorough, well-trained and a good communicator. You can provide your new doctor with educational resources designed specifically for physicians who are providing medical follow-up care for childhood cancer survivors. Check the CureSearch website for more information.
Each new doctor that sees your child will need a copy of your child’s complete medical history. Before seeing a new doctor, you should ask the hospital or oncologist to send summaries of your child’s treatment records and healthcare history. Your child’s doctor may have provided you with information on potential late effects based on your child’s specific diagnosis and treatment.
You may also create a late effects assessment for your child on this website. You should keep your own copy of your child’s treatment summary. Providing the medical summary and risk profile to each new doctor will make the transition easier.
As your child becomes an adult, he or she will be responsible for asking questions and initiating services.
Below are some ways to ease the transition:
- Ask your child what he knows about his diagnosis and treatment. Help him fill in the blanks as needed.
- Have your child help you keep her medical records current at follow-up appointments. Your child can be responsible for updating the list of medications, for example. This not only encourages independence but will be helpful if you are not in the room while he sees the doctor.
- Have your child make and keep track of his own appointments, medications and supplies
- Search for an adult-care medical provider with your teen
- Discuss openly with your child his fears or feelings that may be obstacles to keeping follow-up appointments
- As your teen reaches adulthood, discuss insurance coverage and healthcare financing. When she is old enough, give her a copy of her insurance card to keep with her.
- Encourage your child to never drink alcohol or use tobacco
- Advise your child to talk to his physician about fertility issues
Additional information can be found here:
Late Effects and Your Child
As the number of childhood cancer survivors continues to grow, so does information on the long-term medical side effects-generally known as late effects-of cancer treatment. A late effect is defined as a chronic or late-occurring adverse outcome, complication or disability that persists or develops from the diagnosis of cancer. Studies indicate that more than two-thirds of young adult survivors of childhood cancer eventually suffer at least one late effect, with some survivors experiencing multiple late effects. Medical late effects can occur in any organ or system of the body and vary from person to person. Factors affecting your child’s risk for late effects include diagnosis, age at diagnosis, gender, treatment, complications, family history, health prior to diagnosis and overall health.
Some late effects are visible, such as amputation of a limb or removal of the eye. Others require testing to diagnose. These may occur during childhood or adolescence or may be triggered by an unrelated disease or the effects of aging. As the survivorship rate continues to increase, the medical community is working continuously to adjust treatments to eliminate or minimize late effects.
Maintaining your child’s oncology follow-up visits and yearly physicals will track currently identified problems and will also provide the opportunity to screen for late effects that may not have been present before. To stay knowledgeable about late effects, you can develop a late effects assessment of potential medical and educational late effects specific to your child’s diagnosis and treatment. This information should be discussed with your child’s physician.
Additional information can be found here:
- Staying Healthy After the Treatment of Childhood Cancer
Presenter: Nancy Keene, popular advocate, writer and parent of a 20-year childhood cancer survivor
Wendy Hobbie, MSN, PNP-BC, FAAN
From: The Children’s Hospital of Philadelphia
- Progress in the Treatment of Late Effects
Presenter: Daniel A. Mulrooney, MD, MS
From: St. Jude Children’s Research Hospital
- Late Effects from Radiation Presenter: Louis S Constine, MD, FASTRO
From: James P. Wilmot Cancer Center, University of Rochester Cancer Center
- Optimizing the Lifelong Health of Childhood Cancer Survivors: The Endocrine System
Presenter: Abby Hollander, MD
St. Louis Children’s Hospital, Washington University School of Medicine
- Optimizing the Lifelong Health of Childhood Cancer Survivors: Late Effects
Presenter: Paul Nathan, MD, MSc, FRCPC
From: Hospital for Sick Children in Toronto, Canada
- Advances in Pediatric Marrow & Cord Blood/Transplant: Guidelines for Post-Transplant Care
Co-Provided by National Marrow Donor Program
Presenter: K. Scott Baker, M.D., MS
Fred Hutchinson Cancer Research Center, University of Washington School of Medicine, Seattle, WA
- Late Effects After Treatment Tool (LEATT)