Retinoblastoma

Retinoblastoma is a rare eye cancer that forms in the retina (the light-sensitive tissue at the back of the eye). Retinoblastoma is most common in children younger than age 5 — but in rare cases it can develop in older children and adults. It can affect 1 eye or both eyes.

Retinoblastoma can cause blindness and can also be life-threatening. But early diagnosis and treatment can help prevent vision loss and stop the cancer from spreading. That’s why it’s important to call your child’s doctor right away if you notice signs of retinoblastoma.

The most common sign of retinoblastoma is a white pupil (the round black opening in the center of the eye) when a light shines into the eye. Parents often notice this sign when they take a photo of their child using a flash.

Other signs and symptoms of retinoblastoma include:

• Crossed eyes or 1 eye that drifts in a different direction
• Eye pain, swelling, or redness
• Watery or teary eyes
• Poor vision

If your child has poor vision from retinoblastoma, you may notice that they fall down more often, bump into things, or have trouble moving around the house. They may also bring objects close to their face to see them better.

It’s important to call your child’s doctor right away if you notice any of these signs.

Any child can develop retinoblastoma, but children are at higher risk for retinoblastoma if another family member had it. If you or someone in your family had retinoblastoma, getting genetic testing done can tell you if you have the type that can be passed down.

If you have a family history of retinoblastoma, talk with your child’s doctor about their risk. Children at higher risk need regular eye exams to check for early signs of cancer.

Retinoblastoma happens when changes in a gene cause retina cells to grow into a tumor. Most of the time, these gene changes happen by chance — but sometimes the changed gene is inherited (passed down) from a parent.

When retinoblastoma is inherited, it’s likely to affect both eyes.

An eye doctor can check for retinoblastoma as part of a dilated eye exam. They may also do other tests to help them see inside and around the eye, like retinal photos, ultrasounds, and MRI scans.

If your child is diagnosed with retinoblastoma, they may need other tests — like genetic testing to see if they have the inherited type of the disease. If they do, their other eye could be at risk of developing retinoblastoma too.

Retinoblastoma treatment depends on the size of the tumor and whether or not the cancer has spread outside of the eye. Treatment options include chemotherapy, cryotherapy (freeze treatment), laser therapy, radiation, and surgery. A specialist called a pediatric oncologist can help find the right treatment plan for your child.

Retinoblastoma can cause blindness and even death if it’s not treated in time — but it’s curable when doctors catch it before it spreads outside of the eye and quickly start treatment. That’s why it’s so important to tell your child’s doctor right away if you notice signs of retinoblastoma.

For more information on retinoblastoma research, please visit the National Cancer Institute.