Supporting retinoblastoma patients

Supporting patients who have had retinoblastoma

The effects of retinoblastoma on a patient can be lifelong. Anyone who has had retinoblastoma (Rb) should be monitored to detect and manage any long-term problems caused by the disease or treatment in order to ensure they are picked up as quickly as possible.


Rb is heritable in 45% of cases and a child who inherits the altered Rb gene has a 90% chance of developing retinoblastoma so screening from birth at an Rb treatment centre is vital.


Adults who had Rb as a child may wish to consider genetic screening. For more information on the genetic implications of retinoblastoma visit our genetics section. In cases where there is family history of Rb, patients of childbearing age should be seen by a geneticist who will explain the implications and considerations.

Information on the genetics of Rb was scarce 20 years ago therefore many patients who carry the altered gene may not be aware of the risks associated with this.

Patients planning a family should be referred to a geneticist who can offer genetic counselling. The patient may wish to consider testing, which can include pre-implantation genetic diagnosis; chorionic villus sampling at 11 weeks of pregnancy or amniocentesis at 16 weeks of pregnancy.

Anyone considering having testing in a pregnancy should be seen by a geneticist before they plan a pregnancy so that the necessary background work can be done.

There is one page you may wish to direct your patients to especially: Screening your child

Second cancers

There is an increased risk of second primary cancers to those with the heritable form of Rb. This group includes cases of Rb where the tumour is bilateral or multifocal or where there is a family history. Patients surviving this form of Rb have an increased risk of developing sarcomas within about 5-25 years of treatment. They are also at an increased risk of developing other forms of cancer into later life. The level of risk depends also on the treatment given for the Rb.

• Patients should be monitored for any worrying or persistent problems such as unexplained lumps or pains, new skin moles or changes to an existing mole.
• Adults with heritable Rb should be seen regularly in an adult oncology clinic. Those not currently attending should be referred to the retinoblastoma teams at either the Royal London Hospital or Birmingham Children’s Hospital, detailing the treatment the patient had as a child.

Effects of treatment:

Late effects of chemotherapy for retinoblastoma can include hearing problems, kidney problems and second malignancies
• Late effects of intra-arterial chemotherapy for retinoblastoma can include swelling around the eye, flushing of the skin around the eye and forehead and droopiness of the eyelid. Children may also experience a minor drop in their blood count.
• Late effects of radiotherapy can include cataracts, dry eye, facial asymmetry and retinal detachment
Artificial eyes and vision:
• Many patients have one or both eyes enucleated. People in the UK can visit the NHS National Artificial Eye Service (NAES) or a private ocularist about their artificial eye. GPs can refer to these services.
• Socket problems can be encountered following enucleation.
• Fewer socket problems occur if the patient is under the care of a prosthetist. If problems persist a referral to a local oculoplastic/orbital surgeon via the GP is important as reconstruction of the socket may be possible or necessary.
• Some patients will suffer severe vision loss as a result of their retinoblastoma. This may be in one or both eyes.

Other issues

Any medical issues related to retinoblastoma and follow-up can be directed to the specialist teams at the Royal London Hospital or Birmingham Children’s Hospital.

Royal London Hospital retinoblastoma service 020 3594 1419
Birmingham Children’s Hospital retinoblastoma service 0121 333 9475