Living with, through and beyond cancer

This National Cancer Survivors Day, we sat down with members of the Doernbecher Cancer Survivorship Program to learn how they help people live with, through and beyond cancer.

What is survivorship? 

In cancer, survivorship focuses on the health and life of a person with cancer during and post treatment until the end of life. It covers the physical, psychosocial and economic issues of cancer, beyond the diagnosis and treatment phases. Survivorship includes issues related to the ability to get health care and follow-up treatment, late effects of treatment, second cancers and quality of life. Family members, friends and caregivers are also considered part of the survivorship experience.

As more and more children survive childhood cancer, late and sometimes serious therapy-related complications continue to emerge. Ongoing care for longterm survivors is thus being recognized as an essential part of the cancer care continuum.

It’s important for all children who received cancer treatment to get lifelong follow-up care. The Children’s Oncology Group (COG) has studied the physical and psychological effects that childhood cancer survivors face. Based on these studies, COG has created recommendations for long-term follow-up care for childhood cancer survivors. We follow those recommendations in our Doernbecher clinic.

Who is impacted by childhood cancer? 

In the last three decades, survival rates for childhood cancer have improved dramatically, resulting in a large population of childhood cancer survivors. Today, with the help of chemotherapy, radiation, surgery and improved supportive care, nearly 80 percent of children treated for cancer will become long-term (at least five-year) survivors.With approximately 20,000 children in the United States diagnosed each year with cancer, the number of individuals cured of cancer will continue to grow by more than 15,000 each year.

As survival rates improved over the last several decades and children with cancer reached the second and third decades of life, it became increasingly clear that cure had not come without a price. Researchers confirmed that survivors were at risk for a multitude of chronic or late-occurring health problems caused by their cancer or its treatment, often referred to as “late effects.”

Late effects can affect a survivor’s physical, cognitive and psychosocial health, and survivors remain at risk for developing many of these late effects over time.

How is being a survivor different for someone going through treatment as a child or adolescent? 

Kids treated for cancer miss out on a lot of normal social things. They miss school and are often isolated. Social developmental milestones can be delayed. Receiving chemo and radiation as a growing child can have long term impacts on physical and emotional health – especially a developing brain. Adolescents who are treated often lose independence at a time that they would normally be establishing independence.

In addition to the many physical late effects that may develop in survivors of childhood cancer, there are also a host of psychosocial issues that may emerge. Long-term educational, social, behavioral and vocational difficulties are all common.

Possible late effects include:

  • Cardiopulmonary (heart abnormalities, reduced lung function)
  • Musculoskeletal (decreased bone density, joint damage, scoliosis, post surgical changes)
  • Dental (short roots, weakened enamel, missing teeth)
  • Eyes (cataracts)
  • Endocrine (growth failure, thyroid problems, infertility)
  • Neurocognitive (learning disabilities, memory loss, poor concentration)
  • Social or emotional concerns
  • Second cancers/tumors, benign or malignant

How does the Survivorship program at OHSU Doernbecher help individuals?

The Doernbecher Cancer Survivorship Clinic is available to anyone who is a survivor of childhood, adolescent and young adult cancer who is off treatment for at least two years and cancer free. Something that makes our clinic unique is that we have no upper age limit and continue to see patients into adulthood. Our patients come from three main channels: those who received cancer treatment at OHSU, outside provider referrals and self-referral.

Our team of experts in cancer survivorship issues provide comprehensive care and support to children, teens and adults after treatment of childhood cancer – helping survivors live the best lives possible.

At a visit, patients meet with a multidisciplinary team of providers. The schedule may include labs and evaluative testing as well as visits with a physician or nurse practitioner, social worker, educational specialist, registered nurse, neuropsychologist, dentist and dietitian.

We offer customized support for life concerns such as:

  • Living with the long-term effects of cancer treatment
  • Fertility concerns
  • Mood, emotions
  • Cognitive function and education
  • Employment, insurance
  • Information and resources for healthy living

Our multidisciplinary team sees patients at OHSU Doernbecher Children’s Hospital weekly, and we’ve recently expanded to Salem. For more information or to make an appointment, please call (503) 494-0200.