In this session, doctors Lauren Daniel, PhD and Dava Szalza, MD, MSHP, discusses the transition from active cancer treatment to survivorship care. To listen to the audio recording, please visit: http://www.alexslemonade.org/campaign/symposium-childhood-cancer

1. Roadmap for Survivors:
Transitioning from Active Cancer
Treatment to Survivorship Care
Dava Szalda, MD MSHP and Lauren Daniel, PhD
The Children’s Hospital of Philadelphia
Abramson Cancer Center, University of Pennsylvania

2. Transitioning to Survivorship . . . .
Is a Success!
• But can include . . .
• Separation Anxiety
• Uncertainty
• “Scanxiety”
• Re-integration into school, work and relationships

3. Outcomes of Cancer Survivors
• Most survivors are doing well!
• Good quality of life
• Achieving goals
• Little distress
• Relatively healthy
• Some may have problems and needs
• Having a hard time in some life domains
• Some distress
• Some late effects/health problems
• Unmet needs
• A few experience a lot of problems
• Significant medical or psychological impairment

4. What are Late Effects Of Cancer Therapy?
Some survivors are at risk for long term physical and
psychological effects of their cancer and its therapy.
Late Effects are persistent and adverse changes directly
related to:
 Disease process
 Treatment process
 Both

5. Examples of Late Effects
of Cancer Therapy
 Second cancers
 Psychosocial adjustment
 Depression
 Anxiety
 Endocrine (hormone) problems
 Neurologic Problems
 Fatigue/Sleep problems
 Pain
 Cognitive Dysfunction
 “Chemo-brain”
 Vital organ function
• Cardiac
• Renal
• Pulmonary
• Gastrointestinal
 Reproduction
• Fertility
• Premature menopause
• Urologic issues
 Chronic Pain

6. Who is at Risk?
(Risk depends on many things)
• Age: Both current age and age when treated
• General health & lifestyle
• Family history
• Genetics
• Chance
• Treatment
• More courses of treatment may increase risk
• Type of medications and doses
• Radiation: type and dose

7. What is Risk-Based Follow-up care?
Why is it important?
• Monitor for recurrence of cancer
• Surveillance for second cancers and late effects
• Early diagnosis and intervention
• Prevention
• Tobacco use, physical activity, diet
• Counseling and targeted education
• Risk-Based = Individualized to your diagnosis and
therapy

8. Who provides survivor care?
• Neurosurgery
• Neuro-oncology
• Radiation Oncology
• Neurology
• Rehabilitation Medicine
• GI
• Renal
• Radiology
• Physical Therapy
• Psychiatry/Psychology
• Ophthalmology
• ENT
• Endocrine
• Otorhinolaryngology
• Cardiology
• Internal Medicine
• Pulmonary
• Pain management

9. Who provides survivorship care?
• A multidisciplinary team
• A designated individual should be
responsible for coordinating survivorship
care
• Care is a shared responsibility between
patients, families and providers

10. Young Adult Survivors of
Childhood and Adolescent Cancers
Transitioning to Survivorship can be tough . . . But it can be even
tougher as a young adult.
Transitioning to Adulthood can be tough . . . But it can be even
tougher as a cancer survivor.
Oncology Primary Care
Childhood
(Pediatrics)
Adulthood
(Adult-focused
healthcare)
AYA Cancer
Survivors

11. What can patients and families do to prevent or treat
late effects of cancer therapy?
• Know your risks and resources
• Children’s Oncology Group Long Term Follow-Up Guidelines
• Follow up appointments
• Ask about late effects clinics
• Ask for a treatment summary & care plan from your oncology
team
• Know your body
• Follow a healthy lifestyle

12. Successful Survivorship
• Integrating the cancer event into your life
• Achieve a sense of well-being & peace
• Finding meaning in the illness experience
• Be an active participant in your health and healthcare

13. Neurocognitive Late Effects
• Can vary widely based on:
• Specific diagnosis
• Treatment received
• Age at diagnosis
• Gender
• Important to consider changes
overtime, especially at
transitions in education

14. Addressing Neurocognitive Late Effects
• Frequent communication with your child’s teacher
• Don’t wait until report cards arrive to take action!
• Have your child evaluated at school or through the hospital
• Pros and cons of each option
• If evaluation is through school must request in writing (sample letter)
• Know your legal rights
• Philadelphia Education Law Center is a great resource for PA residents
• Think ahead
• Be proactive and plan ahead for transitions and future challenges (i.e., transition to
new school, SAT, college)

15. Observations that may lead to
assessment:
• Trouble paying attention; may tend to “space out”
• Difficulty understanding and remembering visual information
• Problems writing quickly or accurately
• Trouble keeping up with new material
• Difficulty with math problems, columns, or graphs
• Problems planning and organizing
• Trouble reading
• Difficulty keeping up with homework/multiple assignments
• Social and/or emotional difficulties/changes

16. Neurocognitive Assessment
• Help you better understand your child’s cognitive development after cancer
diagnosis and treatment
• Help you advocate for your child in the school (IEPs or 504
Accommodation Plans)
• Help identify need for additional resources
and/or intervention
• Help you plan for your child’s future

17. Supporting Academic Success
• 504 Plan
• Eligibility: “physical or mental health disability that limits one or more
major life functions.”
• For children who need accommodations to access their education
• Individualized Education Plan (IEP)
• A federal law called the Individuals with Disabilities Education
Act (IDEA) requires that public schools create an IEP for every child
receiving special education services. Kids from age 3 through high
school graduation or a maximum age of 22 (whichever comes first)
may be eligible for an IEP.

18. Post Traumatic Stress and Growth
• Post traumatic stress
• Rates are highest in mothers (44%), followed by
fathers (35%), much lower in adolescent survivors
(18%) (Kazak et al., 2004)
• Post traumatic growth
• Positive interpretation to find meaning in a
traumatic event
• The greater the stress the greater the growth
(Barakat et al, 2005)
• Diagnosis after 5 leads to greater growth and
benefit finding in adolescents (Barakat et al, 2005)

19. Posttraumatic Growth
• Acceptance
• Empathy
• Family
• Appreciation
• Positive Self-view
• Reprioritization

20. Facilitating Growth
• Get involved in the cancer community
• Encourage your child to talk about their cancer when
they are comfortable
• Discuss the experience as evidence of your child
(and your family’s!) strength
• Support your child in sharing
their story as they are
comfortable

21. Thank you
Questions?