Familial Retinoblastoma: A Survivors’ Story

While retinoblastoma can develop independently, in about 1 out of 3 children with the disease, the mutation in the RB1 gene which causes it is congenital. Despite this sometimes being called ‘heritable’ (or ‘hereditary’), in most of these children there is no family history of this cancer, and the RB1 gene change is not inherited from a parent. This is due to the fact that the gene change first occurs during early development in the womb. Only a small portion of the children born with this mutation inherit it from a parent. These last cases are known as familial retinoblastoma.

Children with familial retinoblastoma can have more than one tumor, and tumors can occur in one eye or both eyes (bilateral retinoblastoma). They can also pass the RB1 mutation on to their future children, and are at a greater risk of developing other cancers. A small number of children with this form of retinoblastoma will also develop another tumor in the brain, usually in the pineal gland at the base of the brain. This is also known as trilateral retinoblastoma.

While retinoblastoma is the most common intraocular malignancy in children, it is still a relatively rare malignancy, as according to the latest estimations only 8,000 new cases are diagnosed every year.

Retinoblastoma can be fatal if left untreated, so early diagnosis can save both the patient’s life and vision. However, anecdotal evidence suggests that many across the world are diagnosed late. Fortunately, recovery rates are very high due to the development of precise, modern diagnostics and state-of-the-art medical treatments. A treatment plan for retinoblastoma must take into consideration the tumor’s type, size, and location, and may include laser therapy (photocoagulation or thermotherapy), chemotherapy, radiation therapy, and surgery.

Having discovered a few of the many advantages of receiving familial retinoblastoma treatment in Israel, where exactly should you pursue it? Sheba Medical Center is an exceptional choice. One of the 10 best hospitals in the world according to Newsweek magazine, Sheba is dedicated to providing patients with world-class medical care.

The advantages of receiving treatment at Sheba Medical Center include:

• As a government institution, we have no hidden costs, and our fees are transparent. Although we offer advanced treatments that are available only in select medical institutions around the world, our prices are affordable.
• Sheba treats each patient as a unique individual, personalizing every therapy program.
• Sheba’s 360-degree care approach to every patient, which means that Sheba’s professionals will assist you with arranging medical record reviews, travel, visas, accommodations, and language interpretation as needed.
• Sheba has full accreditation from the Joint Commission International (JCI), the premier international healthcare accrediting group.
• Sheba has both advanced treatment and laboratory facilities. At Sheba, patients receive every aspect of their treatment in a single facility.
• Our physicians are actively involved in the latest research and application of progressive treatments.
• Exceptional experience: As a national and international referral center for diagnosing and treating ocular tumors, Sheba’s Ocular Oncology Center has extensive experience treating retinoblastoma; specialists collaborate with experts at our Goldschleger Eye Institute, the largest facility for ocular medicine in Israel
• Multidisciplinary medicine: at Sheba, specialists from various departments, including hemato-oncologists, geneticists, neuro-radiologists, and radiation oncologists, collaborate to create a holistic treatment plan.