Long Term Effects of Childhood Cancer

Moving Beyond Cancer to Wellness:
Long Term Effects
of Childhood Cancer
Eric Chow, MD
Karen Wilkinson, ARNP
Cancer Survivor Program
(aka “ACCESS”)
Seattle Children’s Hospital

100
90
80
70
60
50
40
30
20
10
1975-
1977
Pediatric Cancer Survival
Overall 80% survival
Estimated 300,000 childhood cancer survivors
(~1 in 600 young adults)
1978-
1980
1981-
1983
1984-
1986
1987-
1989
1990-
1992
1993-
1995
1996-
1998
1999-
2006
NCI SEER 9 Areas, 1975-2007, ages 0-19 yrs

100
90
80
70
60
50
40
30
20
10
1975-
1977
Pediatric Cancer Survival
1978-
1980
1981-
1983
1984-
1986
1987-
1989
1990-
1992
1993-
1995
1996-
1998
Hodgkin Wilms' Soft tissue
CNS Acute lymphocytic Neuroblastoma
Bone Non-Hodgkin Acute myeloid
All Sites
1999-
2006
NCI SEER 9 Areas, 1975-2007, ages 0-19 yrs

End of Treatment
• Many families identify end of treatment as a
time of new uncertainty, frustration and
stress
“ We lived with these people (staff) for 8
months, and then they say ‘ OK, you’re
done, see you. We will see you in 3
months. Bye.’ …..hey, wait a minute. This is
really not over for us”.

Moving from Cancer Patient to Survivor
• Transitions
– End of treatment
– Return to “normal”
– Primary care provider & survivor program
– Teens / Young Adults
• Things to learn about
– Cancer treatment summary
– Follow-up schedule
– Between visits
– Late effects

• Diagnosis
Survivor Knowledge
– 91% knew (72% detailed knowledge)
– 2% cancer
– 7% unaware
• Treatment
– Radiation ~90% aware (70% knew site)
– Anthracycline chemotherapy

Possible Long-term Effects
• Growth & Development
– Growth deficiencies
– Cognitive function
– Hearing loss
– Psychosocial distress
• Fertility & Reproduction
– Delayed or precocious
puberty
– Sterility
• Other Organ
Dysfunction
– Endocrine
– Heart
– Lungs
– Kidney and Bladder
• Second Cancers
No one gets all these problems
No one is completely unaffected by cancer
– Premature menopause
Most survivors lead healthy lives

Growth Issues
• Effects of treatment on growing bodies
– Radiation
– Chemotherapy
– Surgery
• Hormone problems
• Bone health
• Brain development

Growth – Brain Development
• Symptoms may include
– Academic challenges and changes
– Difficulty with multi-step processes
– Feeling less sharp
– Memory problems
– Needing more effort to do things that previously
came easily
• Depends on therapy
– Real changes can be seen in the brain
– Younger ages may be at greater risk

Growth Issues – What can you do?
• Regular preventive health care
– Monitoring height, weight
– Hearing and vision screens
– Dental care
– Screening labs
• Work with schools / teachers if you
suspect learning issues
– Some survivors may benefit from early
neurodevelopmental testing

Reproductive Outcomes
• Can I have children?
• How will my body respond to
pregnancy?
• Will my children be affected by prior
treatment?
– Congenital malformations
– Cancer
– Other birth complications

Reproductive Outcomes
• Treatments that may affect fertility
– “Alkylator” chemotherapy
– Radiation to brain, ovaries, testes
– Dose dependent
• Other issues
– Females: possible effect on heart function
during pregnancy
• Offspring health
– Appear healthy without risk of
malformations or cancer

Reproductive Outcomes
– What can you do?
• Advocate for improved fertility
preservation education & resources
prior to cancer treatment
• Discuss need for fertility testing and
referral to reproductive specialist, and
possibly high-risk obstetrician
• Adoption and other alternatives

Heart & Lung Issues
• Heart disease
– Risk related to ANTHRACYCLINE
chemotherapy and chest radiation
– Conditions that increase blood pressure or
cholesterol levels also important
• Lung disease
– Risk related to BLEOMYCIN chemotherapy and
chest radiation
• Overall, risk influenced by age at treatment,
treatment doses, time since treatment

Heart & Lung – What can you do?
• Know if you/your child is at increased risk
• Talk to your doctor about how best to
monitor for these effects
• Be aware of symptoms that may indicate
heart or lung disease
– Chest pain
– Shortness of breath
– Fatigue
• Modify lifestyle issues
– Avoid smoking
– Be physically active

~3-fold
increased risk
Second Cancers
Pre-chemotherapy
First generation chemo
Combination therapy
Olsen, JNCI 2009

Second Cancers – What can you do?
• KNOWLEDGE:
– Cancer and its therapy can increase risk
of another cancer
– Know what may increase your/your
child’s risk of subsequent cancer
• Know what kind of treatment you/your child
received
• This includes knowing exploring your family
history
– Know if you/your child needs special
screening that others their age do not
typically need

Second Cancers – What can you do?
• ACTION:
– Get the proper screening done
– Lead a healthy lifestyle by avoiding
• Excess sun exposure
• Tobacco
• Excess alcohol
• Physical inactivity
• Poor diet

Long-term Follow-up Goals
• Stay as healthy as possible
• Learn what you need to know about
your treatment
• Learn what is needed for follow-up
care
• Learn where you can obtain proper
follow-up care

2005 Institute of Medicine Report
“From Cancer Patient to Cancer Survivor:
Lost in Transition”
Importance of risk-based care with
Individualized recommendations

Nathan, JCO 2009

Follow-up Schedule
• Follow-up is based on specific disease
and risk of relapse/recurrence
• Establishing care with a primary care
provider is highly recommended
• Late effects and monitoring – should
start by 2 years off active therapy
• Long-Term Follow-Up guidelines for
Survivors of Childhood, Adolescent,
and Young Adult Cancers available at
www.survivorshipguidelines.org

Cancer Survivor Program:
Medical Home for Survivors
• Need longitudinal care: a continuum from cancer
diagnosis through adulthood, regardless of age
• Continuity of care consisting of partnership between
the survivor and a health care provider
• Comprehensive, anticipatory, proactive care that
includes a systemic & individualized plan of
prevention and surveillance
• Multidisciplinary team approach with
communication between primary provider &
specialist(s)
• Health care of whole person
• Sensitivity to issues of the cancer experience

Survivor Program Services
• Complete review of cancer tx records
• Discussion of school/work,
reproductive issues
• Education for survivor and family
• Referral to appropriate subspecialties
• Communication/resource for
community physician
• Case management (medical home) for
those with complex needs

Survivor Program Resources
• Childhood Cancer Survivors: A practical guide to your
future
• Survivor Notebook
– Detailed educational information on long-term problems that you and
your child need to know about
• Survivor Care Plan
– Disease and date of diagnosis
– Chemotherapy & radiation therapy
– Surgeries
– Hematopoietic cell transplant
– Any other cancer therapy
– Transfusions
– Any significant complications
– Associated potential risks of treatment
– Screening and follow-up recommendations

Shifting Care from
Parent/Caregiver to Survivor
• From child to adult
• Relationships with parents/siblings
• Networking/advocacy
• Insurance
• Making healthy choices
– Health protective choices
– Health risk behaviors
– Adult survivor program

Conclusions
• Cure is not enough
• Know what lies ahead for you and your child
• Get educated and advocate
• Participate in research
• Let us work together to help you
MOVE PAST CANCER TO WELLNESS!!
With our thanks to all the patients and
families who continue to teach us and
help those who will face cancer in the
future