2024 Survivorship Champion's Prize
Our Survivorship Program, led by Dr. Smita Dandekar, has been named the recipient of the 2024 Survivorship Champion's Prize by The Stewart Initiative for Childhood Cancer Survivors.
The Children’s Cancer Cause Survivorship Champion’s Prize is an annual award presented to a group, program, or institution making significant advances in programs and services to provide life-long health maintenance for survivors of pediatric cancers. The selection committee lauded this program for its model of healthcare transitions to long-term care after treatment, engagement of primary care providers, use of telemedicine, and its large rural outreach area.
Thriving after Childhood Cancer
The mission of the Penn State Health Children’s Hospital Childhood Cancer Survivorship Clinic is to educate survivors about the possible late effects that may occur as a result of the therapy they received and monitor them closely for these effects. Appointments are available for ongoing, annual care, as well as single consultations.
Understanding the Survivorship Clinic
Who is eligible?
Eligible individuals must have completed therapy at least two years before joining the Survivorship Clinic.
What to expect
What happens during a visit to the Penn State Health Children’s Hospital Childhood Cancer Survivorship Clinic?
In this multidisciplinary clinic, survivors meet with a physician, survivorship clinic coordinator, social worker, neuropsychologist and cancer genetic counselor. Visits include:
- Personalized education about the survivor’s cancer therapy and risk for late effects. Survivors receive an individualized treatment summary outlining total chemotherapy, radiation, surgeries and other interventions during treatment.
- Evaluation for late effects by a physician. Each survivor is assessed for potential long-term complications that may affect the individual’s quality of life or predispose him or her to future health risks. Appropriate coordination of care with additional specialists is made, if necessary. Each survivor also receives a customized plan for long-term follow-up and surveillance testing to monitor risk-based late effects.
- Meeting with the social worker to discuss school, work, behavioral, emotional, relationship or financial concerns, health insurance questions and survivorship resources.
- Assessment by neuropsychologist for any neurocognitive late effects from previous treatments.
- Meeting with a cancer genetic counselor to help identify whether or not a survivor's cancer may be associated with an inherited cancer syndrome and facilitate genetic testing when indicated. The genetic counselor will obtain family history information and discuss the benefits and limitations of genetic testing.
What is a late effect?
Late effects can create challenges for various aspects of growth, development, and organ functions include:
- Bone health
- Dental health
- Emotional health
- Fertility
- Heart health
- Kidney health
- Learning
- Liver health
- Lung health
- Thyroid health
- Vision and hearing
This growing population of long-term survivors is at risk for adverse effects related to their cancer and subsequent therapy. These adverse effects, known as late effects, may not become apparent until years later. Approximately two-thirds of childhood cancer survivors experience at least one late effect.
Transition to adult care
Once a survivor reaches age 30, he or she moves from the Survivorship Clinic to an adult primary care physician, and the team provides a packet to the new physician to ensure an easy transition.
Resources for Adolescents and Young Adults
A number of resources are available to adolescents and young adults who have been diagnosed with cancer or had a loved one with cancer.
Events
- Feeling Good: Reconnect to Your Body with Dance (Dec. 3) - a virtual workshop where a dance/movement therapist will guide you through movement and body awareness exercises that may help you feel more at ease in your body and address emotions and thoughts about your experiences in your body. Click here to register
- It's the Most Wonderful, Stressful Time of the Year (Dec. 4) - join Stupid Cancer for a two-part virtual discussion series around normalizing holiday stress and creative coping strategies. Click here to register
- Stupid Cancer X the After Cancer: Cards Against Cancer Digital Meet-Up (Dec. 4) - connect with others for a fun-filled evening as we come together to share laughs and support one another. Click here to register
- YA Cancer Gabfest (Dec. 9) - we invite you to press pause on the usual activities of your life and join us for a week of interactive survivorship crash courses for facing cancer, to share, explore, and learn as we interact together around the common paths of young adult cancer. Click here to register
Local Support and Supportive Opportunities
Websites, Podcasts and Apps
- Adolescent and Young Adult Cancer
- Cactus Society
- Cancer Exercise App (ISO only)
- Cancer.gov (National Cancer Institute)
- Critical Mass: The Young Adult
- Elephants and Tea
- Life on Pause Podcast
- Managing Mental Health After A Cancer Diagnosis (Georgetown University School of Nursing)
- Stupid Cancer
- Teen Cancer America
- The Ulman Cancer Fund for Young Adults
- Young Adult Cancer Connection: Meet your cell mates
- Young Survival Coalition
Scholarships for Pediatric Cancer Survivors
A number of organizations offer college scholarships for pediatric cancer survivors. Explore individual scholarships, scholarship directories and other resources here.
Scholarship Guide
There are several scholarship opportunities for you to consider. Scholarships are available for individuals in current treatment, cancer survivors and family members that have been affected by cancer.
Making the Right Transition into College
Transitioning into college can be difficult for any student, but as a childhood cancer survivor, this transition can be even more of a challenge.
Resources
- Affordable Colleges Online: Article regarding helpful resources for cancer survivors.
- American Cancer Society: Resource searches based on diagnosis.
- American Society of Clinical Oncology (ASCO): Extensive list of resources for scholarships and other financial information, as well as reliable information on disease and survivorship.
- Livestrong: Extensive resources for financial, fertility, education, health, etc.
- National Coalition for Cancer Survivorship: Information on employment rights, etc.
- PA Career Link: Job training resources, resume writing, other helpful counseling regarding employment.
- PA Office of Vocational Rehabilitation (OVR): Provides employment and training assistance to patients who have experienced significant health events and/or disabilities.
- Stupid Cancer: Financial assistance lists for college scholarships and daily living expenses.
- U.S. Equal Employment Opportunity Commission: Enforces Federal laws prohibiting employment discrimination. These laws protect you against employment discrimination.
Support the Survivorship Clinic
The Childhood Cancer Survivorship Clinic at Penn State Health Children’s Hospital is funded through Four Diamonds.
Since its creation in 1972, Four Diamonds has helped nearly 4,000 children and families and supported a diverse platform of childhood cancer research at Penn State Health Children’s Hospital, seeking improved treatments and cures to benefit kids around the world.
The Four Diamonds mission is to conquer childhood cancer by assisting children and their families through superior care, comprehensive support and innovative research.
Four Diamonds covers 100 percent of all medical expenses related to cancer care not covered by insurance for eligible Four Diamonds children. Because of the community’s steady and generous support, Four Diamonds has assisted 100 percent of the childhood cancer patients who have been treated at Penn State Health Children’s Hospital.