Published: Mar. 25, 2011
Updated: Mar. 28, 2011
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Inspired by the need for connection among those faced with retinoblastoma, Duke Eye Center, in conjunction with Duke Pediatric Hematology/Oncology, is hosting the Second Annual Retinoblastoma Family Day.
The event will take place Saturday, April 30, 2011, in the Duke Children’s Hospital & Health Center lobby from 1:00 to 3:00 p.m. An RSVP is preferred, and the event is open to all interested parties.
Retinoblastoma is a type of cancer that forms in the tissues of the retina, which is the light-sensitive tissue at the back of the eye. Affecting approximately 300 children in the United States each year, retinoblastoma is the most common intraocular cancer of childhood. It usually develops in early childhood, typically before five years of age, and can affect either one or both eyes.
The most common first signs of retinoblastoma are leukocoria, a visible whiteness to the pupil often noticed in photographs, and strabismus, a misalignment of the eyes. Retinoblastoma can be classified as either hereditary or nonhereditary.
In addition to the implications for other family members, the hereditary form of retinoblastoma poses an increased risk for an affected child to develop a tumor in the other eye and cancer elsewhere in the body.
Additionally, approximately 10 to 15 percent of children with retinoblastoma of one eye and no family history of the condition have the hereditary form. For these reasons, genetic counseling and genetic testing are helpful in identifying whether the retinoblastoma is hereditary or nonhereditary and in clarifying the risks for the affected child and the family.
In 90 to 95 percent of cases of retinoblastoma, the condition is curable with early detection and treatment. Treatment options depend on the age of the child, as well as specific characteristics of the retinoblastoma tumor within the eye.
Currently available treatment options for retinoblastoma include chemotherapy, cryotherapy, radiation therapy, laser treatment, and enucleation.
Care for children with retinoblastoma is best provided by a team of specialists in pediatric ophthalmology, pediatric hematology/oncology, and radiation oncology. This coordinated care typically occurs at intervals of anywhere from two to six months for the first six years of the child’s life, again depending on the individual features of the retinoblastoma tumor.
Event Coordinator Renee Halberg, MSW, LCSW, explains: "It's difficult to imagine what it's like to be diagnosed with retinoblastoma ... Imagine being told your precious baby has eye cancer that may require chemotherapy and/or the removal of an eye. It’s almost unthinkable, which is why this event was created.”
It is important to address emerging psychosocial issues at this time of medical crisis.
At Duke Eye Center and Duke Pediatric Hematology/Oncology, licensed clinical social workers are integrated into the team approach to care for patients with retinoblastoma. They provide psychosocial care by meeting with each family to establish a rapport, assess their needs, offer counseling, and link families to resources. This relationship develops over a span of time. The knowledge that professional psychosocial care services are available is of comfort to patients and their families. They may choose when to ask for additional support during different stages of their lives.
Furthermore, this aspect of psychosocial care is endorsed by the Institute of Medicine (IOM), which addresses depression and other emotional distress related to a cancer diagnosis, as well as “life challenges” or barriers to care.
This year’s Retinoblastoma Family Day features a series of informative presentations about updates in treatment, research, and genetics by some of the specialists at Duke University Medical Center involved in the day-to-day care for patients with retinoblastoma. These specialists will also be available for individual discussion concerning specific questions families may have about these and other topics.
Most importantly, this event provides an avenue for conversation, with the ultimate goal of creating an external support network for family members and patients alike.
Come join us for snacks, games, arts and crafts, music, and ‘shooting hoops’ with Duke athletes, all while learning, understanding, and connecting with others.
The Second Annual Retinoblastoma Family Day, April 30, is an event for patients and their families.