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.

What to Expect at Your First Appointment at the Cancer Care Center

Cincinnati Children’s is internationally renowned for delivering innovative cancer care to children of all ages, from babies to young adults. You’ll be surrounded by a compassionate and understanding team that puts your family first.

We take the time to guide you through the treatment plan, clearly explaining why it’s best for your child and addressing your concerns. We’ll answer your questions quickly and thoroughly, whether you’re here in our clinic or back home reviewing everything we’ve shared.

Our cancer programs are designed around families just like yours. From keeping kids (of all ages) entertained, informed and empowered during their care to connecting parents, siblings and spouses or partners with support, we’re here however you need us.

Learn what you can expect at your first appointment.

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.

Your Itinerary

Your first visit can feel overwhelming. You’ll receive a detailed itinerary for the day to help take any guesswork out of your visit. Your intake coordinator will email the schedule before your appointment. Please review it and let us know if you have any questions.

The itinerary will include:

• Appointment time and location. We’ve allowed for time to park, arrive and register for the appointment. Please try to arrive on time.
• Campus map. We’ll include floor or suite numbers and suggestions for the closest parking. 
• Scan or lab test appointments. Sometimes, we schedule imaging scans and other lab tests on the same day as your visit to our clinic. Details on time and location will be included in your itinerary.
• Appointment instructions. Some scans and tests require specific preparation such as fasting. Your intake coordinator will review these instructions with you. They will also be included in your itinerary.
• Recommended clothing. Most of the time, our patients can wear whatever is most comfortable. However, some imaging tests may require certain items not to be worn. If this is the case,  instructions will be included in your itinerary.

Preparing for Your Appointment

Here are a few things you can do to prepare for your first appointment. These small steps can help you feel in control and prepared.

• Carefully review your itinerary. Your itinerary is a great resource with detailed instructions for your appointment.
• Write down questions. Use a notebook or start a note in your phone about any questions you may have. Jot them down as you go. We’ll answer every single one of them.
• Bring necessary items. These can vary for appointments, but typically include:
• Current medications (including dosage and instructions)
• Insurance cards
• Medical records
• Test results
• Completed paperwork
• Review our visitor’s policy. Our visitor’s policy can change based on illnesses that are circulating in our community. Please review the latest visiting guidelines before your appointment.
• Download the Caren app. The Cincinnati Children's app is our digital concierge to make your visit to Cincinnati Children’s as easy as possible. It includes parking details, directions and more.

Admissions

Sometimes our patients need to be admitted to the hospital the same day as their appointment. This allows us to deliver comprehensive, continuous care.

When scheduling your appointment, your intake coordinator will let you know if your child or you might be admitted. Pack necessary clothing and other items for a potential hospital stay. We will help you prepare for admission before you arrive.

As always, please let us know if you have any questions on how to best prepare for your appointment.

On the Day of Your Visit

Arriving at Your Appointment

Please follow the itinerary and schedule for all appointments. Your itinerary will include directions on where to park. 

Most appointments for retinoblastoma patients will take place at our Burnet Campus location in Cincinnati. For this location, park in the main parking garage off Burnet Avenue.

If you have an appointment at our Liberty Campus location in Liberty Township, the main parking lot on the right-hand side of Yankee Road offers easy access to the main entrance (Location A & B, Floor 1).

If you are running late for your appointment, please contact us.

At Your Appointment

Our primary goal is to find the best possible treatment plan for your child and to bring you hope during this stressful time. Your child’s care—down to who they see and when—is tailored just for them. We carefully review all medical information and create an appointment and itinerary that connects you with the right specialists. Those providers may include specialists from:

• Oncology
• Ocular oncology
• Ophthalmology
• Surgery (if placing a central line)
• Radiation oncology
• Genetics
• Neurosurgery/Interventional radiology
• Gynecology/fertility
• Nutrition therapy
• Behavioral health
• Interventional radiology
• Rehabilitation medicine
• Palliative care

We’ll address your child’s or your whole health during your visit. You may also meet with:

• Social workers
• Child life
• School intervention specialists

During the appointment, we’ll spend time getting to know your child and family. Then, we’ll perform a physical exam and review medical records and test results. Our primary focus for this first visit is to educate and empower you. We’ll share our insight, explain findings and outline possible treatment options.

However, keep in mind that the treatment plan won’t be finalized until your team of specialists discusses your child’s care together as a team, in detail. This allows us to explore all possibilities and recommend the best plan.

First visits typically last about two to three hours. This doesn’t include other testing or imaging your child may have on the same day. Your itinerary will let you know how long you can expect to be at our clinic.

Research Opportunities

Cincinnati Children’s is a national referral center for the hardest-to-treat pediatric cancers. Our patients have access to both national clinical research studies as well as research studies only available at Cincinnati Children’s. Your care team will work closely with you to determine the best treatment plan for your child’s condition.

Before You Leave

We’ll carefully review next steps with you and answer any questions or concerns. Our care managers will work with you to schedule follow-up visits, including treatments, testing, imaging or any other appointment needed.

After Your Visit to CBDI Cancer Clinic

After your appointment, your oncologist may consult with other colleagues about your child’s care plan. These meetings can provide additional insight about your child’s diagnosis and the best possible treatment plan. Your care team will call you after this meeting to share any updates or arrange another visit with us.

If you have any questions in between your child’s appointments, please contact us directly. We’re here to help.

Helping You Navigate Care

You’ll be assigned a nurse care manager after the first appointment. Your care manager can answer questions and connect you with resources in the community and at Cincinnati Children’s. They will be your primary contact person.

Emergency Care

It’s important to know when to get emergency care for a child with cancer. To ensure you feel empowered to act, we’ll spend time reviewing what to do in case of an emergency. When in doubt, contact us directly at any time with questions or concerns.