What to Expect When Retinoblastoma is Suspected
If retinoblastoma runs in your family, our ocular oncologist (a doctor who specializes in diagnosing and treating tumors of the eye) will examine your baby shortly after birth and schedule genetic testing. If you don’t know of any family members with retinoblastoma, but notice a change in your child’s vision, it’s a good idea to see a specialist.
Diagnosing Retinoblastoma—What to Expect
The first step to treating retinoblastoma is to get an accurate diagnosis from an ocular oncologist (eye cancer specialist). Your child’s pediatrician or ophthalmologist can refer you to our team of specialists, who are highly trained in diagnosing and treating retinoblastoma.
Contact us to make an appointment with our retinoblastoma program. Our retinoblastoma program coordinator will work with you to schedule an evaluation with an ocular oncologist to examine your child’s eyes under anesthesia. The retinoblastoma care manager will also coordinate other related appointments, including medical oncology, MRI and labs, to reduce visits to the hospital.
Your child’s eye (or eyes) will be examined by a trained ocular oncologist. This procedure is done under general anesthesia (called eye exam under anesthesia, or EUA), meaning your child is not conscious and will not feel any pain.
Once the exam is complete, the ocular oncologist will confirm the diagnosis and staging of the tumor. A multidisciplinary team consisting of an ocular oncologist, pediatric medical oncologist and interventional radiologist will help in decision-making and recommendations for treatment.
Immediately after the EUA, you will meet with the ocular oncologist to discuss your child’s exam and any test results, as well as recommendations for treatment. If cancer is diagnosed, the retinoblastoma care coordinator will work with you to schedule your first appointment with a pediatric medical oncologist. We make every effort to coordinate appointments on the same day.
Making an Appointment with the Retinoblastoma Program
We want it to be easy to get cancer care. You can contact us directly to schedule an appointment or have your provider send a referral. Our team also works closely with other departments within the hospital to connect your family with additional services and care you may need.
Once we receive your request, one of our intake coordinators will quickly reach out to you to gather more details. This will include basic information about medical history, including the current diagnosis or concern, and current or past treatments. Our physicians then review the information to determine if our program is the best fit for your family.
Occasionally, our doctors recommend having a child admitted through our emergency department or transferred directly from another facility. If this is the case, we’ll work with you and the current care team to arrange for care.
Preparing for Your Appointment
You don’t have to navigate your child’s or your cancer diagnosis and care plan alone. We’ll be in frequent contact, letting you know exactly what to expect at appointments and answering any questions you have.
The first thing we’ll do is gather initial information and signatures, including:
- Release of information. This will allow us to gather details from other providers.
- Verbal consent. For patients over age 18, we’ll need a verbal consent to share medical information with parents, spouses / partners or others.
- Health information. We’ll go over a detailed questionnaire to learn more about your child’s or your medical history, symptoms, diagnosis or concern.
- Medical records. Once we have a signed release of information (ROI), we’ll work with the current care team to gather medical records, test results, pathology or imaging that will help our team create a treatment plan.
All these details will be shared with your child’s care team. This will allow our doctors, nurses and care coordinators to plan the first visit appropriately.
