About the Childhood Cancer Survivorship Clinic

As part of the Survivorship Clinic at Penn State Children’s Hospital, pediatric cancer survivors meet with the care team including a physician, nurse practitioner, Survivorship Clinic coordinator, neuropsychologist, genetic counselor and social worker, all of whom specialize in late effects of childhood cancer.

Meet the Survivorship Team

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Understanding the Survivorship Clinic

Who is eligible for the Survivorship Clinic at Penn State Children's Hospital? Expand answer

A survivor must be at least five years from diagnosis and at least two years off therapy to be eligible for the Survivorship Clinic.

How often do I go to the Survivorship Clinic? Expand answer

Visits to the Survivorship Clinic are annual. From two to five years after therapy, you continue to see your primary oncologist between your annual Survivorship Clinic visits, per the oncologist’s recommendations. Five years following therapy, you completely transition care to an annual visit in the Survivorship Clinic.

What will happen on the day of my visit? Expand answer

As part of the Survivorship Clinic at Penn State Children’s Hospital, pediatric cancer survivors meet with the care team including a physician, nurse practitioner, Survivorship Clinic coordinator, neuropsychologist, genetic counselor and social worker, all of whom specialize in late effects of childhood cancer.

The initial visit to the Survivorship Clinic will last about one hour.

Visits include:

  • An individualized treatment summary: This summary outlines cumulative chemotherapy doses, radiation doses, surgery and other interventions from the day of diagnosis to the present. This is based on the Children’s Oncology Group Long-Term Follow-Up Guidelines.
  • Evaluation and education related to late effects: Based on the cancer treatment received, each survivor is assessed for potential late effects that may affect their quality of life or predispose them to future health risks. Each survivor is given a long-term follow-up plan detailing recommended tests and a schedule to monitor for risk-based late effects.
  • Appropriate referrals: A referral to a specialist will be made if necessary. The survivorship social worker also offers resources and help with any school, work, emotional or financial concerns. Subsequent yearly visits focus on education on various wellness issues that often affect childhood cancer survivors.
What is a late effect? Expand answer

There are two types of treatment-related effects. Acute side effects happen very shortly after therapy is received (i.e., hair loss, nausea). Late effects are from that same therapy, but don’t show up until long after the therapy is complete, often many years later. About two-thirds of childhood cancer survivors have at least one late effect, and about one-third have a late effect that is serious or life-threatening.

Late effects can sometimes impact many areas of the survivor’s life, including physical, psychological, social, educational, vocational and financial.

Late effects can create challenges for various aspects of growth, development and organ functions, such as:

  • Bone and dental health
  • Kidney, heart, liver or lung health
  • Thyroid health
  • Vision and hearing
  • Emotional health
  • Fertility
  • Learning
Why do late effects take so long to show up? Expand answer

Late effects are caused by the damage cancer treatment does to healthy cells in the body. Most late effects are caused by chemotherapy or radiation. Major surgery can also lead to late effects. Cancer treatments such as radiation therapy and chemotherapy kill cells that grow quickly, such as cancer cells. In a child, many healthy cells in organs throughout the body are growing fast, too. Treatment can damage these cells and keep them from growing and developing the way they should. Sometimes the damage from treatment isn’t serious enough to cause problems that are noticed right away, but they may show up over time.

The Childhood Cancer Survivorship Program is led by director Smita Dandekar, MD, who teaches cancer survivors about the possible late effects and monitors them closely for these effects. Learn more about the Survivorship team and Dr. Dandekar.

How long do I attend the Survivorship Clinic? Will I still see my primary oncologist? Expand answer

Survivors visit our Survivorship Clinic yearly until they are 30 years old or 10 years after therapy, whichever is later. The longer the survivor is off therapy, the less likely it is for the cancer to recur, and though we watch very closely, the visits focus more on developing a lifetime plan for wellness. When a survivor becomes an alumnus of the Survivorship Program, care transitions to their family doctor.

All survivors always have the opportunity to say hello to their primary oncologists and nurses in clinic when they come for their Survivorship Clinic visit, since we are all located in the same area.