Dr. Kerry Moss of Connecticut Children's Medical Center shares about the late effects of childhood cancer treatments.

1. LATE EFFECTS OF CHILDHOOD
CANCER
Kerry Moss, MD
Connecticut Children’s Medical Center
Alex’s Lemonade Stand Foundation
November 16, 2014

2. Thanks to Alex’s Lemonade Stand!

3. Today’s Topic: The Late Effects of
Childhood Cancer
“Cure is not
enough”
----Dr. Giulio
D’Angio

4. Childhood Cancer Today…the Numbers
• Approximately 12,000
Children and Adolescents
are Diagnosed with Cancer
Each Year in the US
• ~46 new diagnosis each
day (2-3 during webinar
today)
• One in every 285 Children
Develop Cancer by the Age
of 20

5. Childhood Cancer Today…the Numbers
• On Average, 1 in every 4
Elementary Schools has a
Child with Cancer
• The Average High School
has Two Students who
are Childhood Cancer
Survivors
• Cure Rates Today are >
80%
• Estimated 4800 children
each year will be long-term
survivors

6. Distribution of Childhood Cancer in
the US
Bone
5%
Lymphoma
11%
Kidney
6%
CNS
20%
Leukemia
32%
Sarcoma
7%
Other
11%
Neuroblastoma
8%
SEER Data, 1975-95

7. 7
90
80
70
60
50
40
30
20
10
0
1960 1970 1980 1990 2000 2005
Year
% relapse free
1950’s: ~10-20%
2014: >80%

8. 1980s
1970s
1960s
1950s
Childhood ALL:
Dramatic Survival Improvements
Pui, NEJM 1995; 332: 1618

9. How Did We Get From There to Here?
• Earlier
detection/improved
modalities
• CT
• Improved disease
understanding
• MRD/Minimal residual
disease
• Targeted therapies
• TKIs/Tyrosine kinase
inhibitors

10. Our Current Approach to Childhood
Cancer
MinimizeToxicities
Maximize Cure

11. The Facts on Childhood Cancer
Survivorship
• 1 /10 Cancer Survivors <
40 yo
• 379,112 Childhood Cancer
Survivors are Living in the
US Currently
• 1 of Every 539 Young
Adults (Ages 20-39) is a
Childhood Cancer Survivor
The American Cancer Society's publication,
Cancer Facts & Figures 2014.

12. The Facts on Childhood Cancer
Survivorship
• Less than 25% of Survivors
Obtain FU By Cancer Centers
• Documented Barriers to Care
Include:
• Historical Lack of
Emphasis/Importance
• Survivors Prototype
• PTSD/Anxiety s/p Cancer
Treatment

13. The Advent of Survivor Clinics and
Survivor Focused Care
• First Survivor Clinic Started at CHOP in
1983
• Currently 42 National Clinics
• 13 CONNECCS Members
• CCSS
• NIH Funded The LTFU Study
• Started in 1994
• 20,000 Identified/13,000 Participated
Survivors Between 1970 and 1986
• NCI 1996~Office of Cancer Survivorship

14. The Shift of Focus to Survivorship
• Survivorship Has Entered Into
Politics, Pop-Culture & Sports
• Livestrong Democratic Cancer
Forum
• “I’m Too Young For This”
• Lauded by Time as one of the Best
Websites

15. How Do We Define Survivorship?
Clinical
• An individual at least 2-5 years off therapy for childhood
or adolescent cancer
Research
An individual diagnosed with cancer at age less that 21 years,
surviving five years from date of diagnosis without evidence
of persistent cancer
Office CancerSurvivorship NCI
• “An individual is considered a cancer survivor from the time
of cancer diagnosis, through the balance of his/her life”

16. What Defines the Survivorship
Experience?
• Family experience during treatment (family factors,
medical history, supportive services)
• Combination:
• Long-term effects of illness
• Long-term effects of treatment
• Personal, social and cultural meanings associated to
survivorship
• …No two survivors are the same!

17. What Contributes to Late Effects?
• Cancer/Tumor Type
• Treatment Modalities
• Individual Patient
Genetics
• …No two survivors
are the same!

18. The Different Modalities of
Childhood Cancer Therapy
 Surgery
 Chemotherapy
 Radiation
 Bone Marrow Transplantation
…Each Modality Has Different Acute
 And Late Side Effects

19. Treatment Associated Late Effects
..
Kenney, in Nathan and Oski, Copyright © 2010 Elsevier Inc. All rights reserved.

20. The Heart of the Matter…the
Cardiac Late Effects
• Chemotherapy (Anthracyclines) Can Lead to
Heart Cell Damage Causing heart weakening
(heart failure)
• Many Risk Factors
• Echocardiogram
• Medical management & Lifestyle Modifications
• Radiation to the Chest/Neck Can Lead to
plaque build up (atherosclerosis)
• Dose Dependent
• Blood Test
• Medical Management and Lifestyle
Modifications

21. Take My Breath Away…Pulmonary
Complications of Cancer Therapy
Chemotherapy (Bleomycin)
Can Lead to Lung Scarring
• Dose Dependent
• Chest Xray/Pulmonary
Function Tests
• Medication Management and
Lifestyle Modification

22. Fertility Concerns in Childhood
Cancer Survivors
• Males: Chemotherapy (Alkylating
Agents) and Radiation Can Decrease
Sperm Production and Function
◦ Sperm Analysis
◦ Proactive Cryopreservation/Reproductive
Counseling/Adoption
• Females: Chemotherapy and Radiation
Can Lead to absence of
menses/decreased ovarian function
◦ Laboratory/Ultrasound Confirmation
◦ Reproductive Counseling/ Adoption

23. The Offspring of Childhood Cancer
Survivors
• Offspring do not demonstrate an
increased risk of cancer!!!
• Green et al (CCSS)
• 4029 pregnancies in 1915 survivors
• No evidence of adverse outcomes
• Genetic predisposition is the exception
• Wilm’s Tumor, Retinoblastoma, Li-
Fraumeni

24. Endocrine Late Effects
• Obesity
• Thyroid Disease
• Osteoporosis
• Growth Hormone Deficiency

25. Secondary Malignancies in Childhood
Cancer Survivors
Risk: Chemotherapy (Alkylating Agents and
Epipodophyllotoxins) and Radiation
Therapy
Most Common/Most Preventable: Skin
Cancers
Less Common: Secondary Leukemia, Colon
Cancer, Breast Cancer
Hodgkin’s Disease Survivors~Breast Cancer

26. More Than Just Medical…The
Psychosocial Issues
• Approximately 25% of Childhood Cancer
Survivors Experience some form of
depression/anxiety
• Post-traumatic Stress Symptoms in 5-
20%
• 30% Report Issues 20-30 Years After
Treatment

27. Educational Concerns
• Radiation to the Brain and Certain
Chemotherapies Can Affect Learning
• Radiation Leads to Short Term
Memory Loss Causing School Decline
• School Absence, Avoidance and Peer
Interactions Can Lead to Decreased
Performance
• Risk Taking Behaviors Can Lead to
School Performance Decline
• Resources school system dependent

28. Insurance Issues
• Long term medical expenses due to late effects may
result in more out of pocket expenses
• Late effects may result in more missed days of working
with loss of job and health insurance
• Good news – most pediatric cancer survivors have some
form of health insurance

29. Where is the Silver Lining…
It is important to put our findings into context…
“Cancer is a deadly disease and to cure it often requires fairly toxic
therapy. Because children and teens have organs still in the growing stage,
they're particularly vulnerable to the effects of these therapies, so it's
common to see chronic health problems years after.
The silver lining, however, is that cancer survivors need to realize that
some of these conditions can be prevented, and many can be reduced in
severity,“
~Kevin Oeffinger, MD
NEJM 2006

30. The Positive Side of Survivorship
• “Positive Benefit Finding”
• Positive Changes in Focus
• Reordering of Life Priorities
• Strengthened Relationships
• Increased Resilience
• Renewed spirituality/religiosity
• Greater Appreciation of Life
• Overall, Childhood Cancer Survivors Exhibit
Lower Levels of Aggression, Antisocial
Behavior and Substance Abuse

31. What We Know About Recurrent
Disease in Survivorship
• Fear of Late Relapse >>>> Reality
• CURE = 5 years
• Highly Variable by Disease and Treatment
Modalities
• Historical Reality

32. 90
80
70
60
50
40
30
20
10
0
1960 1970 1980 1990 2000 2005
Year
% relapse free
1950’s: ~10-20%
2014: >80%

33. Late Recurrence in Pediatric
Cancer: A Report From the Childhood
Cancer Survivor Study
• 5-year survivor cumulative incidence
of recurrent disease:
• 4.4% at 10 years
• 5.6% at 15 years
• 6.2% at 20 years
• Cumulative incidence varies by
diagnosis
• Greatest Risk: earlier treatment era
Karen Wasilewski-Masker,
JCNI, 2009

34. What Are We Doing to Minimize
Late Effects and Relapses?
• Research, Research, Research
• Minimize Toxicities/Alter
Therapies
• Develop Novel Approaches
• Paradigm Shift To
Prevention/Early Detection of
Late Effects
• Education, Education,
Education…Healthy Living Focus

35. Next Steps For Survivors/Parents
• Participate in a
Survivorship Clinic
• Re-establish care with
Primary Care Physician
• Transition to Adult PCP
• Serve as an advocate for
yourself/your child
• Ask Questions
• Empower Your Survivor/
Yourself

36. STAR Clinic at Connecticut Children’s
Medical Center
• Multidisciplinary Clinic
• One time vs annual
• Each Patient Evaluated
by:
• Pediatric Oncologist
• Social Worker
• Nutritionist
• Nurse Educator
• +/- Endocrinologist
• 2-3 hours long
• Passport for Care
created/distributed

37. Components Of Successful Long-term
Follow-Up
•Prevention
•Surveillance
•Intervention
•Coordination
From Cancer Patient to Cancer Survivor: Lost in Transition
(Institute of Medicine 2005)

38. Resources…
“Help, I Need
Somebody…Not
Just Anybody”
~The Beatles

40. Resources
• American Society of Clinical Oncology
• www.cancernet.org
• Patient website from the American Society of Clinical Oncology. Provides
information on cancer type, coping, and survivorship issues.
• Children's Oncology Group
• www.survivorshipguidelines.org
• Long-term follow-up guidelines for survivors of childhood, adolescent and
young adult cancers
• Oncolife/Oncolink
• www.oncolink.org
Oncolife’s on-line survivorship care plan tool. Included is patient education and
resources for cancer survivors
• LIVESTRONG foundation
• www.livestrong.org
• 1-866-673-7205
• SurvivorCare offers one-on-one support for counseling, local resources,
financial, insurance, job concerns and discussing your cancer. Website offers
patient education, support and advocacy.

41. Resources
• National Cancer Institute
• www.cancer.gov
• 1-800-4-CANCER
• Information on physiological and psychosocial effects, clinical trials, caregivers.
• Facing Forward Series: Life After Cancer Treatment
• American Cancer Society
• www.cancer.org
• 1-800-ACS-2345
• Information, education, support and local resources. Cancer Survivor’s Network provides
on-line community for survivors to share their stories, use discussion boards and chat
rooms to meet other survivors.
• National Coalition for Cancer Survivorship
• www.canceradvocacy.org
• 1-888-650-9127
• NCCS provides education resources, such as A Cancer Survivor's Almanac: Charting
Your Journey, the Cancer Survival Toolbox and a patient resource guide.

42. Finally…the Take Home Reminders
We Have Come a Long Way, Baby!
Late Effects are the Price We Pay
for Curing Cancer…Thankfully an
Ounce of Prevention is Worth a
Pound of Cure
Today’s Treatment Modalities Take
Into Consideration Toxicities/Late
Effects
Individuals Vary Greatly in Their
Response to Disease and
Treatment…Late Effects are Not
“One Size Fits All”

43. Thanks to you for Being Here Today!
“I’m Sorry for You…I’m
Sorry for You that You
Do Not Believe in
Miracles”
~Lance Armstrong