Recovery & Support for Retinoblastoma

A team of specialists at the Stephen D. Hassenfeld Children’s Center for Cancer and Blood Disorders, part of Hassenfeld Children’s Hospital at NYU Langone, is available to support your child and your family during and after treatment for retinoblastoma. Our oncologists, radiation oncologists, ophthalmologists, nurses, psychologists, and wellness experts—who offer integrative therapies such pet therapy—provide assistance and follow-up care.

Our experts offer ongoing support for children and families as they cope with diagnosis and treatment. These child and family support services and resilience programs are provided by Sala Institute for Child and Family Centered Care.

Post-Treatment Screening

Children with inherited retinoblastomas require frequent follow-up because of an increased risk of recurrence. Based on the type of treatment your child received and whether the cancer has spread beyond the eye, the doctor creates a screening schedule that may include eye exams, blood tests, and MRI scans. Typically, children are examined by an eye cancer specialist every four months until they are three years old, every six months until they reach age five, and then annually.

A recurrence of retinoblastoma is rare, but if it recurs it is most likely to do so within 28 months of treatment.

Retinoblastoma Relapse

Despite the best care, some children experience a relapse, or recurrence, of retinoblastoma. If this occurs, your child’s oncologist creates a treatment plan, which can include focal therapy, radiation, or surgery to remove the tumor and eye—a procedure called enucleation.

If the retinoblastoma returns in the soft tissue surrounding the eye or the optic nerve, doctors may recommend chemotherapy or radiation therapy, or both. In rare situations, such as trilateral retinoblastoma, when cancer appears in both eyes and in the pineal gland of the brain, doctors may use stem cell transplantation.

In an autologous stem cell transplant, high doses of chemotherapy drugs are given to destroy cancer cells in the body. After chemotherapy, our specialists collect stem cells—which develop into other cells, such as infection-fighting white blood cells and oxygen-carrying red blood cells—from the child’s own body.

The stem cells are filtered through a machine and then frozen and preserved. Next, very high doses of chemotherapy are given, after which the stem cells are then infused back into the body. They start to make new, healthy blood cells. This process reduces levels of white blood cells, raising the risk for infection, and so your child stays in the hospital for several weeks until the immune system recovers.

Clinical Trials

Your doctor may also recommend that your child participate in a clinical research trial, which is a scientific study designed to test new and emerging treatments for cancer and other conditions.

NYU Langone is a member of a National Cancer Institute–supported organization, the Children’s Oncology Group. This group brings together thousands of experts from around the world to research and test new treatments for childhood cancers, including retinoblastoma.

Genetic Counseling

Children who test positive for a mutation in the RB1 gene in the blood and those who have retinoblastomas in both eyes are believed to have the hereditary form of retinoblastoma, even if they don’t have a family history of the cancer. They are also at increased risk of developing a secondary, or different, cancer later in life, including bladder cancer, lung cancer, or melanoma.

Children who carry an RB1 mutation have a 50 percent chance of passing the mutation on to their own children. Siblings and parents are offered testing for the genetic mutation, as well. If they test positive, our specialists can perform frequent eye exams and monitoring for early signs of retinoblastoma and other types of cancer of which they have an increased risk.

Should you wish to have more children, experts at NYU Langone’s nationally renowned Fertility Center offer genetic testing of embryos created during in vitro fertilization (IVF). Our specialists can use a process called preimplantation genetic diagnosis, or PGD, to help ensure that only embryos without the RB1 gene mutation are transferred to the uterus.

Experts at NYU Langone’s Clinical Genetic Services provide preconception and prenatal counseling about PGD and genetic testing during pregnancy.


Children who have chemotherapy, radiation therapy, focal therapy, or surgery for retinoblastoma can experience fatigue, weakness, and neurological side effects, such as numbness in the fingers and toes, a symptom of a condition called neuropathy. Experts at NYU Langone’s Rusk Rehabilitation provide physical therapy, even for very young children. Most important, they can work with children who have vision problems after their treatment to optimize their eyesight.

Wellness Services

Experts at the Stephen D. Hassenfeld Children’s Center for Cancer and Blood Disorders offer wellness programs for children, their siblings, and their parents, including art therapy, horticulture therapy, massage therapy, music therapy, pet therapy, psychological services, sibling support groups, yoga, and more. Our medical librarians can provide information on retinoblastoma and its treatments, and our social workers and psychotherapists can offer counseling services.

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