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Familial Retinoblastoma: A Survivors’ Story

What Benefits Does Israel Offer to Patients with Familial Retinoblastoma?

Learn more about the advanced treatments offered in Israel and discover the story of baby Stephan’s battle with the malignancy

Retinoblastoma is an eye cancer that begins in the retina — the light-sensitive nerve tissue lining the inside of your eye. The retina sends signals through your optic nerve to your brain, where these signals are interpreted as images.

Retinoblastoma occurs when nerve cells in the retina develop genetic mutations. These mutations cause the cells to continue growing and multiplying when healthy cells would normally die. This accumulating mass of cells forms a tumor. Retinoblastoma cells can then invade further into the eye and nearby structures, and at times also spread (metastasize) to other areas of the body, including the brain and spine.

Familial Retinoblastoma

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.

The Story of Baby Stephan’s Fight with Familial Retinoblastoma

“While going through life’s trials and tribulations, we never once regretted our decision to choose Sheba Medical Center. Our little son, Stephan, is alive and healthy, and he can see this beautiful world with his saved left eye.”

In October 2012, Stephan and his twin sister Lera were born strong and healthy, yet within a few weeks, Stephan’s parents noticed that his pupil wasn’t black, but transparent. Their ophthalmologist referred the baby for additional diagnostic testing, and baby Stephan was diagnosed with retinoblastoma in both eyes. Although the tumor was growing rapidly and his eye had become black and inflamed, the local doctors did not take action.

Stephan’s parents watched anxiously as their son’s condition deteriorated, and eventually decided to search for treatment abroad. Their research led them to Sheba Medical Center in Israel, where Dr. Victoria Vishnevskia-Dai and a comprehensive team of specialists began to treat Stephan immediately. For over a year, Stephan received life-saving treatments, including chemotherapy and surgery to remove his right eye, but Sheba’s doctors were able to save his left eye and its functional vision. It is now eight years later, and Stephan, still in remission, is an active little boy who enjoys life!

Stephan’s full story

Benefits of Familial Retinoblastoma Treatment in Israel

Quality of Care:

Israeli physicians are exceptionally well-trained and often spend even more time on their medical education than American doctors. Also, you can be assured of high standards and strict safety regulations if you choose a hospital accredited by a trustworthy authority.


In many countries, healthcare costs can be exorbitant. Without insurance, the costs of cancer treatment can be crippling. Prices are much lower in Israel, averaging 30-80% less than in the US, for example. That said, you’re not trading affordability for quality, since Israeli specialists, medical institutions, equipment, and procedures are among the most advanced in the world.

Advanced Treatment:

Medical institutions in Israel and the US often collaborate in advanced cancer research, developing new and effective treatments against the disease, yet Israel has fewer constraints than the US when it comes to adopting novel treatments. Israeli clinical trials still adhere to the highest standards of safety, but innovative treatments are generally made available to patients sooner than in the US

Familial Retinoblastoma

Where to Pursue This Treatment in Israel?

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.

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Sheba Medical Center provides innovative, personalized medical care to patients from around the world. We are the largest, most comprehensive hospital in the Middle East and dedicated to providing advanced and compassionate medicine for everyone.

We welcome all cases, including the rarest and the most challenging. Our medical teams collaborate to provide the best possible health outcomes. From your initial inquiry through the long-term follow-up care, we are here for you.

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