5 Things to Know about Surviving Pediatric Cancer

Dr. Joy Fulbright, Division of Hematology/Oncology, Director, Adolescent and Young Adult program, Medical Director, Survive and Thrive program

When your child is diagnosed with cancer all you hope and pray for is that your child survives. You’re focused on the present and getting through treatment. If you’re like most parents, you’re not thinking about your child’s health decades from now, but the reality is 60% of children that survive will have chronic or long-term effects because of the chemo and radiation.

So now that your child has survived cancer – what’s next?

Know Your History

Knowledge is key to staying healthy and survivors should know the treatment they’ve received. What late effects a survivor may experience depends upon the therapy that they received. Monitoring guidelines are made based on this information.

One of the things we provide our patients with is a Passport for Care, which is a one-page summary of the treatment the patient has received and the late effects already experienced. This information can easily be easily accessed by family members and doctors and is automatically updated when the Children’s Oncology Group monitoring guidelines change. When a survivor transitions to adult care, a list of recommendations is also given to the provider the survivor transitions to.

Survivors that don’t have historical information should reach out to the facility that provided their care to get that information.

Find a Good Primary Care Doctor

Children need to be monitored for late effects their entire life, so finding a good primary care doctor who is aware of the risks and will ensure necessary screenings is important. Late effects may occur as early as two years after treatment or not until decades later.

Depending upon the treatment a child received they may experience cardiovascular late effects, especially as they reach adulthood. Survivors who are at risk should have an echocardiogram every 2-5 years, to monitor for cardiomyopathy (enlargement of the heart).

Survivors may also need to be monitored for hormone deficiencies, especially if they've had brain radiation. Radiation affects the pituitary gland, which controls growth, the reproductive system and regulates the body.

Neurocognitive side effects, such as changes in attention span, concentration and executive functioning, can occur in survivors who have received brain radiation or high doses of chemotherapies.

Having a physician that knows all the potential risks will help survivors decrease those risks and live a healthy life. The sooner problems are identified, the sooner they can be treated.

Prevention is Key

Undergoing chemo or radiation can increase the risk of secondary cancers, so prevention is critical. All cancer survivors should receive the HPV vaccine at recommended time to prevent HPV related cancers. It is extra important that they practice sun safety (wear a large brimmed hat, apply and reapply sunscreen daily, avoid peak sun times etc.) and avoid all tobacco products.

Cancer screenings such as a Pap smear, colonoscopy, mammogram and checking for skin cancer are necessary as the child gets older. Some survivors will need to get these screenings done earlier than the recommended age depending on the treatment. For instance, a child that had chest radiation is at higher risk for breast cancer and should get a mammogram well before the age of 40.

Other aspects of staying healthy include yearly physicals to ensure healthy weight and normal blood pressure. Regular exercise is extremely beneficial in improving these aspects of health. Dental health is also important. Getting chemo as at a young age can affect the development of adult teeth and having regular dental checkups can prevent future problems.

Take it One Day at a Time

Cancer can be overwhelming, and survivorship is a key part of the cancer therapy journey. Some patients (and parents) will experience depression or anxiety. A specific kind of anxiety-post-traumatic stress disorder can develop from experiencing cancer therapy. Symptoms include feeling over-whelming stress before an appointment, feeling sweaty, feeling like the heart is racing, and chest pain or even having a full-blown panic attack. If experiencing these symptoms, it is important to discuss with health provider. Providing early interventions such as counseling (specifically cognitive behavioral therapy) and medications can help alleviate these symptoms. The earlier treatment starts the better.

Treating the whole person and focusing on overall health, which includes mental health, can help someone feel normal again. The goal is to get a survivor back to where they were before they were sick. So, if a kid was a star athlete before treatment, empower that child to get back to sports. If they can’t do the same activities, try to encourage them to try new things.

Find a Mentor

When a person goes through a life altering experience having someone they can talk with about the experience can be therapeutic and reassuring. Finding a non-medical person to share concerns with as well as successes, especially if they’ve been through a similar situation, helps normalize the process.

We have a peer-to-peer program (PEEPS) that matches teenage patients who have finished therapy with survivors that are 18-26 years old. The survivors enjoy giving back and it helps the patient know someone else that made it through the transition.

Cancer can change how one looks at life and their viewpoint but having a support system can make a world of difference. We want our patients not just to survive but to thrive!

Learn more about the Division of Hematology, Oncology, and Blood and Marrow Transplantation at Children’s Mercy.

Learn more about the Survive and Thrive program at Children’s Mercy.

Learn more about PEEPS (Patients Encouraging and Engaging Peep Support) at Children’s Mercy