What to expect after a childhood cancer diagnosis

Overwhelming emotions can set in after a childhood cancer diagnosis. Find out how navigators and professionals help families.

The mixture of emotions that emerges with a new childhood cancer diagnosis can cause overwhelming feelings in both the child and the family. Childhood cancer treatment has evolved from a sole focus on medical treatment and survival to also encompass the emotional and behavioral support that children and families need. What can families expect after a childhood cancer diagnosis?

Providing support at the time of childhood cancer diagnosis and beyond

At Norton Children’s Cancer Institute, affiliated with the UofL School of Medicine, after a child receives a cancer diagnosis they meet with a patient navigator who will be a one-on-one resource to help the family throughout the child’s cancer treatment.

Patient navigator roles developed over time for a good reason: 84% of kids with childhood cancer now survive five years or more, according to the American Cancer Society. Treatments and managing care have become more complex over time, and the patient navigator educates and guides families through every step of the cancer treatment journey.

According to Frances Price, R.N., patient navigator with Norton Children’s Cancer Institute, she sees patients at the time of diagnosis or soon afterward.

“The first meeting is very emotional. The family may have just found out that the child has cancer, and they are usually very overwhelmed,” Frances said. “They’re overcome with grief. It’s hard to process a lot of information at that point. So in my initial interaction, I introduce myself, what my role is, and I provide them with a tote full of books and support items — but I don’t open it right away. I tell them, ‘This is information that you and I are going to sit down and go over together. And I’ll be back tomorrow; we’ll set up a time to meet.’ We’ll ideally try to go over the information and education in several sessions, because they’re just in shock.”

Support for the whole family

When a child is undergoing cancer treatment, they can spend months or years having tests, treatments, medical procedures, clinic visits, hospital stays and so much more. During that time the family, including parents and siblings, are trying to make their way through it all too. Frances plays a crucial role, not only in helping families understand their child’s diagnosis and treatment protocol, but also in every step of the logistical aspects of caring for a child with cancer, including:

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  • Scheduling physician appointments and explaining screenings, procedures, exams, follow-up and lab work
  • Navigating the health care system
  • Coordinating and advocating for the child’s and family’s physical, emotional and social needs
  • Obtaining referrals to community resources and support services

“I’m an advocate for them,” Frances said. “I can go between the medical team and the family to come to an agreement on what the best plan of action is and how to carry it out and how to get their goals accomplished. And I just try to make the journey a little smoother, if at all possible in the cancer world. I try to reduce their anxiety about the unknown.”

Many families experience financial issues and/or difficulty maintaining employment. Siblings may have difficulties with elevated distress, less time with their caregivers and affected siblings, and less attention and access to typical activities.

Norton Children’s Cancer Institute offers support to the whole family. Caregivers and siblings can participate in support groups that offer therapeutic activities and support for common issues that arise.