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Survivorship:
The Next Steps in Cancer Care
Follow-Up
Deb Schmidt RN, MSN, APNP
It is estimated that:
• 1 in 285 children will be diagnosed with cancer prior to the
age of 20 years
• 1 in 530 young adults between the ages of 20-39 years will
be a pediatric cancer survivor
Therefore it is likely that most pediatric and primary care
practices will be involved in the diagnosis, treatment and
follow-up care of our survivors.
Incidence of Survival

1960
– 28% 5-years

1998
– > 75% 5-years

2006
– > 80% 5-years
Overall 5-year Survival Rate
Leukemia
Acute lymphocytic 90%
Acute myeloid
63%
Lymphomas
Hodgkin lymphoma
97%
Non-Hodgkin lymphoma 84%
Bone and joint
73%
Brain
75%
Neuroblastoma
76%
Soft tissue
76%
Wilms tumor
89%
Source: Surveillance, Epidemiology, and End Results (SEER) Program (www.seer.cancer.gov)2010
Why discuss late effects???

Treatment modalities have positive impact on disease but
what are the negative long-term consequences???

Late effects can be caused by the disease process,
treatment or a combination of both.

As health care professionals we have a responsibility to
these patients, families and caregivers to educate and
provide services for their late term sequelae.
Factors Influencing Late Effects
1) Tumor-related Factors
2) Treatment-related Factors
3) Host-related Factors
“Cure is not enough”
We all have the same goal…..
Cure cancer while maximizing
the health of the survivor.
Factors influencing late effects:
Clinical history and course

Initial Diagnosis

Prolonged Presentation of Symptoms
(Posterior fossa syndrome/cognitive functioning)

Type and Intensity of Treatment

Age and Development Stage at the Time of
Diagnosis and Treatment

Multiple Blood Transfusions (risk of iron overload)
Host-related Factors
•
•
•
•
•
•
•
•
•
•
Gender
Age at diagnosis
Time from diagnosis/therapy
Developmental status
Genetic predisposition
Inherent tissue sensitivities and capacity for normal tissue
repair
Function of organs not affected by cancer treatment
Premorbid health state
Socioeconomic status
Health habits
Tumor-related Factors
•
•
•
•
Tumor location.
Direct tissue effects.
Tumor-induced organ dysfunction.
Mechanical effects.
Treatment-related Factors
•Use of Combined Modality Therapy
• Radiation Therapy
• total dose
•Blood Product Transfusion
• fraction size
• location
•Hematopoietic Cell Transplantation
• type
•Chemotherapy
• type
• dose-intensity/cumulative dose
• schedule.
•Surgery
• technique
• site
The Challenge

At time of diagnosis/consent, patients and families
are more concerned with immediate life and death
issues than late effects.

“When that happens to me there will be new/better
treatment available.”

“Cancer is in my past. I want to go on with my life
like everyone else.”
What are the late effects?
1. Physical
2. Psychological
3. Cognitive
4. Economic
5. Emotional/Social
– school
– employment/insurability
– relationships
Many Survivors of
Childhood Cancer
Have Chronic Illnesses
By Jane Stoever
10/24/2006 Survivors of childhood cancers confront more than their share of chronic diseases, according to the abstract for "Chronic
Health Conditions in Adult Survivors of Childhood Cancer," a study reported in the Oct. 12 issue of The New England Journal of
Medicine.
Just how heavy a burden of illness do survivors of childhood cancer bear? Among the more than 10,000 childhood cancer survivors who
completed the study, nearly two-thirds reported having at least one chronic condition, according to the study's authors. That's compared
with slightly more than one-third of the 3,000-plus siblings serving as controls for the study who said they had at least one such
condition.
Among 10,397 survivors, 62.3 percent reported having at least one chronic condition, according to Oeffinger and his co-investigators.
By comparison, among 3,034 siblings, 36.8 percent reported they had at least one chronic health condition.
"By the time the survivors are about 30 years out from their cancer diagnosis, almost three-fourths report some type of chronic health
condition," Oeffinger said. In addition, the survivors were "eight times as likely to have a serious, life-threatening or disabling
condition, in contrast to their siblings," he said.
The vast majority of pediatric cancer survivors are not receiving follow-up care "with an eye toward the risks that they have," Oeffinger
said in the ABC interview. "It's very important that if they're being followed … by their primary care physician in the community, or by
a specialist such as a cardiologist, that it's done in consultation or at least in communication" with someone at a cancer center who can
interpret the risks from the survivors' cancer treatments.

Late effects can range from mild to severe

Any organ system can be involved

Secondary malignant neoplasms can occur

Quality of life is affected

Academic achievement may be affected

Job discrimination
Late Effects of Childhood Cancer
Growth and Development
Linear growth
Skeletal maturation
Intellectual function
Emotional/social maturation
Sexual development
Fertility and Reproduction
Fertility
Health of Offspring
Vital Organ Function
Cardiac
Pulmonary
Renal
Endocrine
Gastrointestinal
Vision/Hearing
Second Neoplasms
Benign
Malignant
Late Effects Spectrum
•
Life Altering
•
Life Threatening
•Infertility
•Neurocognitive Deficits
•Low Grade SMN’s
•Hearing/Vision Loss
•Amputation/ Chronic Pain
•Short Stature
•Obesity
•Immune Deficiency
•Endocrinopathies
•Asplenia
•Cardiomyopathy
•Pulmonary Fibrosis
•High Grade SMN’s
Late Effects
•
•
•
Every system can be affected
Late effects increase with age
Screening and early detection are vital
KNOWLEDGE*AWARENESS*EDUCATION*REFERRAL
Partnerships
Primary Care
Provider
Cancer Center
Survivor
Transition of Survivor Care
• Necessary for Most Childhood Cancer Survivors in US
• Multidisciplinary LTFU programs collaborate with PMDs
in the community.
• Survivorship programs are a resource to provide coordination
of care for the survivor.
Pediatric Resources for Health Care
•
•
•
•
Children’s Oncology Group
Beyond the Cure
NCI
Next Steps Clinic at CHW
Thank You