Life After Childhood Cancer

Roma Bhuta, DO, MPH

Each year, about 15,000 children in the United States are diagnosed with cancer. The most common types of pediatric cancers are leukemia, brain/central nervous system tumors, and lymphoma. According to the National Cancer Institute, in 2016, there were an estimated 15.5 million cancer survivors in the United States, and at least 429,000 of these survivors were first diagnosed when they were under the age of 20.  

At Hasbro Children’s Hospital, we treat between 40 and 60 children each year who are newly diagnosed with cancer. We recognize how overwhelming this diagnosis can be, but the good news is we have significantly improved cancer treatment over the last several decades. Thanks to these advances, many children can be cured of their disease. Currently, the overall 5-year survival for childhood cancer is 80 to 85%.

While the improvement in outcomes is excellent, as the number of survivors increases, there must also be a focus on long-term health and effects of therapy.

The challenges for pediatric cancer patients

In general, it’s an extremely busy time after a child and family is given such a tremendous diagnosis. Because time is an important factor, the child’s multidisciplinary care team will quickly jump into action to do a full workup before the initiation of treatment.

The diagnosis is usually confirmed by doing a biopsy or surgery. Once this is completed, a treatment plan can be formulated, many of which are based on pediatric clinical protocols.

For some children, surgery alone may be all that is needed. For others, however, treatment may include chemotherapy/immunotherapy, radiation, surgery, or any combination of those, depending on the diagnosis.

Treatment can last from a few months to more than two years depending on the treatment plan. While our goal is to cure every child with minimal side effects, unfortunately, some children might not respond well to treatment. Complications of therapy include but are not limited to life threatening infection, organ dysfunction, and impacts on appetite, stamina, and endurance.

Cancer treatment affects patients physically but also mentally. Some children and their families may experience behavioral and psycho-social challenges that come with a diagnosis of cancer and the acute aftermath of the diagnosis and treatment process.

Life after treatment

Not only is there an adjustment that comes during treatment, but then there is also an adjustment to life after cancer. After therapy, there is a focus on healing from acute side effects of chemotherapy and on regaining strength and function.

As we continue to improve overall cure rates, the number of long-term cancer survivors has also increased. This population of patients must be counseled and followed for long-term side effects of their specific therapy. While the oncology community continues to strive to reduce side effects of therapy while improving outcomes, current treatments can have significant side effects. Thus, life-long monitoring is necessary to keep childhood cancer survivors as healthy as possible.

After therapy, patients are monitored for side effects based on cumulative doses of specific chemotherapy agents, surgery, or radiation. Long term monitoring is individualized based on each person’s specific treatment plan.

In addition, behavioral and psycho-social aspects can affect a child’s health. After therapy, children are monitored closely for potential impacts on their mental health and school performance. We must also not forget the impact treatment has on other members of the family, all of which can set the stage for long-term effects.

The survivorship clinic

Because we believe following our pediatric cancer survivors is a critical part of life after treatment, we have developed an innovative multi-disciplinary survivorship clinic.

Our team includes two pediatric oncologists, a physician specializing in adult and pediatric medicine (med/peds), a nurse practitioner, and social work team. Our practice model is to provide comprehensive care to our survivorship patients that includes acute medical needs, general health, and counseling and monitoring for late effects of cancer therapy.  

We pride ourselves on providing well balanced care to our community of cancer survivors and really focusing on life after cancer. Each visit is individualized based on prior treatments and current medical history. Our clinical social work team also helps to manage psycho-social and behavioral concerns and fears. They can help address some of the common themes we see in survivors, including a fear of cancer returning and of significant long-term side effects. Children and families are given a lot of support from the medical team during therapy and we want that support to continue even after treatment is completed.

What parents should know

We recognize what a difficult journey this is for parents as well. I really encourage staying in touch with our survivorship program after the completion of therapy. I often tell parents that while the acute treatment may be for a specific amount of time, we are going to be friends forever.

Our patients do not get transitioned to adult survivorship programs. Our expertise in the treatment of childhood cancers allows us to be the most qualified to look out for potential complications of that therapy so we follow patients well into adulthood.

These children have been through a very challenging experience to be cured of their disease; following in our survivorship clinic allows them to lead the healthiest life possible.

You can learn more about our program here.

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