As more and more children survive cancer, it is estimated
that 1 in 300 young adults is a childhood cancer survivor. These survivors are returning in ever-greater numbers to their primary care
providers (PCPs) for their ongoing care. PCPs may be challenged in caring for
these survivors, because they were treated with many different therapies
associated with rare, but significant, complications or “late effects."
Lisa Diller, MD,
chief medical officer of Dana-Farber/Boston Children's and
medical director of the David B. Perini, Jr.
Quality of Life Clinic,
spoke to MedPageToday about
her five top tips for adult or family PCPs managing the care of adult patients who survived childhood cancer.
Below, Diller and Peter Manley,
a Dana-Farber/Boston Children's neuro-oncologist and director of the Stop &
Shop Family Pediatric Neuro-Oncology Outcomes Clinic, share their recommendations for pediatricians seeing cancer survivors who are still
in their childhood or adolescent years.
1. Make sure you have
a treatment summary and survivorship care plan from the patient's oncologist.
It is standard practice when a child transitions off of active
treatment for the oncology team to generate a summary for the patient and the
provider that includes an overview of the patient’s diagnosis and treatment.
As the pediatrician, you should expect to receive recommendations
for ongoing routine care such as a re-immunization schedule or recommendations
for management of fevers. This communication can help clarify the pediatrician’s
and the oncologist's respective roles in the child's ongoing routine care.
Those roles can differ from patient to patient based on the treatments they
have undergone. A child who received hematopoietic stem cell transplants or is
otherwise immunosuppressed, for instance, may need to see her oncologist for
routine symptoms longer than a patient who received less intensive therapy.
Between three and five years after the completion of
therapy, survivors often have a follow-up visit that focuses less on disease
recurrence and more on organ toxicity from treatment, assessment of growth and
development in the face of prior therapy, and treatment-related risks that
should be evaluated. At that visit, a new survivorship care plan can be created
to lay out which survivorship screenings should be conducted and when, and which
subspecialists should be included in the child's care going forward.
2. Understand that
transition is a time of anxiety for children and families. When a child
finishes cancer therapy, it is a cause for both celebration and anxiety for the
family. Parents can be particularly anxious about the end of therapy, the
knowledge that their child will not be seen as frequently in the oncology
setting and the risk of cancer recurrence. If you have concerns about an
increase in anxiety around this time, the oncology psychosocial provider at
your patient's cancer center can work with you to arrange for your patient and
her family to be seen by a community provider.
In addition, families may express concerns about the risk of
cancer in their child's siblings. For example, if a child's leukemia first
manifested with a high fever, it is logical that the family would be anxious if
her brother also developed a high fever. However, with the exception of
families with a strong history of cancer, most pediatric cancers do not run in
families, and a sibling's risk of cancer is not significantly higher than
3. Keep watch for signs
of early and late treatment effects, and be aware of screening recommendations.
Issues around treatment-related toxicities can emerge both during treatment and
shortly after transition, such as hearing loss in patients treated with
platinum-containing drugs. Depending on the treatments a child received, late- or
long-term effects can include:
The Children's Oncology Group publishes Web-based guidelines
for survivors' follow-up care.
But the PCP also has an active role to play. For instance, a child who received
radiation to the brain can have difficulties with cognition that affect school
performance. If problems arise, consider referring her for neurocognitive
testing, ideally through a cancer survivorship program. Similarly, signs of
growth delay, hypothyroidism or early or late puberty could be a sign of treatment-related
endocrine dysfunction and warrant referral to an endocrinologist.
4. Understand the “new” services available in
cancer centers with pediatric oncology programs. With the growing number of
survivors, most large pediatric cancer programs deliver specialized services
for survivors, including “survivor” clinics, where a single multidisciplinary
consultation or ongoing care can be provided. Available services often include
parent/patient education, oncology assessment, mental health services and
medical subspecialty evaluations, including endocrinology, dermatology,
neurology and cardiology, as needed.
Other possible interventions/services for survivors and
their families include genetic counseling, fertility assessments and support
groups. Some programs provide camp opportunities, scholarships and
volunteer/team-building activities for eligible survivors.
5. Promote good
eating, exercise and health habits. Good nutrition, exercise and tobacco
avoidance are all part of good health, and are just as important to childhood
cancer survivors as they are to your other patients. Encouraging healthy
lifestyles can help childhood survivors reduce later risks of chronic adult
disease that may otherwise be elevated due to the treatment they received as
Phone: 617-632-5124Email: Perini_Clinic@dfci.harvard.edu
Through ongoing education, care and support, we are preparing cancer survivors for the road ahead. Learn about our extensive services for survivors of pediatric cancer.
Lisa Diller, MD, discusses the unique needs and concerns of
childhood cancer survivors, including fertility issues, follow-up care, and
World class cancer care at the #1 Children's Hospital
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