Survivorship in Pediatric
Oncology: Reclaiming Life:
The Art and Challenges
Beverly Rossi Ryan, M.D.
Tomorrows Children’s Institute
Hackensack University Medical Center
Pediatric Survivorship
A Growing Population
5 yr EFS has increased from 50% to
80% over the past three decades
 Mortality has decreased 50%
 Incidence of childhood malignancy
has increased slightly
 By 2010, it is estimated that 1 of250
adults between 18 and 45yo will be a
survivor of pediatric malignancy

Pediatric Survivorship
Advocacy
of Survivorship – NCI
 Follow up of late effects has
become part of the mission
statement of many oncology related
societies
 Government funding is predicated
in part upon doing outcome
research
 Office
Pediatric Survivorship
Different Than Adult
Survivorship
 Types
of cancer seen
 Incidence
 The use of protocol studies
 A child is still growing when
subjected to chemotherapy and/or
radiation, agents designed to alter
growth
Pediatric Survivorship
Questions Asked on Behalf
of Survivors

Will there be a fast forwarding of the aging
process?
 How will a cancer history and genetics
impact upon the risk of a second malignant
neoplasm?
 What are the late effects of therapy and very
late effects? Can we predict earlier
menopause, early onset atherosclerosis
and/or early onset of adult type cancers?
Pediatric Survivorship
Ways That Answers to These
Questions Can Help

Identifying toxic outcomes allows for
modification of current/future therapies. This
has already happened:
 Cranial RT was discontinued as CNS
prophylaxis in ALL
 In Hodgkin’s Disease ABVE partially replaced
MOPP chemotherapy to reduce exposure to
alkylating agents. Involved field RT has
reduced exposure
 In Wilms tumor,RT to the abdomen has been
reduced
Pediatric Survivorship
Ways That Answers to
These Questions Can Help
Answers may reassure some survivors
for instance the RR of SMN is low in
ALL survivors
 Answers may target certain subsets of
survivors to be at higher risk for
certain sequelae. This would permit a
more focused surveillance

Pediatric Survivorship
Ways That Answers to
These Questions Can Help
 Answers
may help in modeling a
cost effective health delivery
system; since currently it is
unclear which health care provider
will follow these survivors into
adulthood
Pediatric Survivorship
Identifying Subsets
RT to the whole brain <7yo and
possibly at any age will have cognitive
effects.
 RT to the head which includes the
pituitary gland may have 2º hormonal
effects especially growth and fertility
 RT to the lungs, heart and kidney may
result in decreased function
 Depending upon dose delivered, RT to
the gonads may result in infertility

Pediatric Survivorship
Identifying Subsets

Certain drugs may target organs for long
term effects. Survivors with moderate to
high cumulative dosages of these drugs
should be followed for dysfunction
 anthracycline – heart
 Cyclophospamide – bladder, fertility, SMN
 Cisplatinum – kidneys, hearing
 Ifosfmide – bladder, kidney
 VP16 – leukemia
 RT - SMN
Pediatric Survivorship
Identifying Subsets
 Surveillance
of premature
menopause especially in
adolescent females who
 received RT below the
diaphragm
 had high cummulative doses of
cytoxan and/or other alkylators
Pediatric Survivorship
Late Effect Variables
 Types
of diagnosis
 Age at diagnosis
 Dose intensity
 Type of therapy
Pediatric Survivorship
Known Late Effects
Growth
 Endocrine
 Fertility/progeny
 Neurocognitive
 SMN
 Organ damage
 Psychosocial

Pediatric Survivorship
Emerging Late Effects
 Hepatitis
C
 Obesity
 Fatigue
 Bone
morbidity
Pediatric Survivorship
The Art
The measurement of the overall
impact of therapy is a great deal more
complicated than survival.
No one person can adequately
address all the medical and
psychosocial issues which involve
survivor, family and their quality of life.
It takes a team
Pediatric Survivorship
Psychosocial Issues
Post traumatic stress syndrome
especially in parents
 Family dynamics –
dependency/independency
 Self esteem/social isolation
 Body image and its effects on
intimacy/sexuality
 Fears of recurrence, SMN, for progeny
 Disclosure - dating

Pediatric Survivorship
Advocacy Issues
 Discrimination
– military,
insurance
 Vocational goals
Pediatric Survivorship
The Challenges
for recurrence – what is
reasonable?
 Educating re: healthy lifestyles
 Educating re: knowledge of
previous Dx & Rx
 How do we transition to adult care?
 How do we capture outcome data?
 Surveying
THE COMPREHENSIVE
CANCER CONTROL PLAN OF
NJ

Our pediatric workgroup roster included:
Wond Bekele and Peri Kamalakar from
Beth Israel, Alice Ettinger from St Peters,
Kim Kinner from ACS, Susan Murphy,
Anne Nepo and Kathy Sanok from Saint
Barnabus, Bev Ryan, Steve Halpern, Libby
Klein, Larissa Labay and David Gordon
from HUMC and Peg Knight the Executive
Director of the Office of Ca Control and
Prevention;
THE COMPREHENSIVE CANCER
CONTROL PLAN OF NJ

We met regularly and voted upon seven areas
we felt were important enough to develop
strategies and objectives for further
consideration and inclusion in the plan;
 The seven areas were AYA, SMN,
Pain/Palliation, Psychosocial Health of
child/family, Education, Neurocognitive
Deficits and Advocacy;
THE COMPREHENSIVE CANCER
CONTROL PLAN OF NJ
 The
entire plan was published in July of
2002;
 It was validating to see that areas we
selected were also highlighted in the
National Action Plan for Childhood
Cancer and the recently published
Institute of Medicine report;
THE COMPREHENSIVE
CANCER CONTROL PLAN OF
NJ

On 10/22/03 we met to narrow our focus
and choose several projects to work on as a
group and as NJPHON;
 As a way of assessing psychosocial support
and opportunity to access clinical trials for
AYAs we are asking the county evaluators
to canvas the adult programs in their areas
asking several questions concerning these
issues;
Childhood Cancer Workgroup
County Evaluator Queries
1.
2.
3.
4.
Do you have psychosocial support to counsel
adolescents and young adults and their families;
and if yes, who (e.g., social worker, nurse,
psychologist)?
Do you have adolescent and young adult patients
registered on national protocols?
How do you follow your AYA’s, at what time
intervals, and for how long?
What is the youngest age accepted for treatment
at the adult center?
THE COMPREHENSIVE CANCER
CONTROL PLAN OF NJ


We are partnering with the advocacy group to
look at the problem of reimbursement for
psychosocial services and at the problem
uninsured young adults;
We addressed possible ways to educate primary
health care providers about survivorship and the
late effects of therapy. One possibility is a
speaker’s panel. We need to formulate a topics list
and bring it back to NJPHON for comment and
volunteer participation;
THE COMPREHENSIVE
CANCER CONTROL PLAN OF
NJ
 We
agreed on a one day survivors’
conference for a lay audience. There are
funding sources for such endeavors and a
number of successful programs to model;
 In summary, these projects are works in
progress trying to improve many of the
ancillary issues facing children with cancer or
a history of cancer in this state.