Cancer risk after retinoblastoma

Some people who had retinoblastoma as a child will have a slight increased risk of developing other types of cancer. These are called second primary tumours or second cancers*.

There are two factors which increase risk.

  • Having the heritable form of retinoblastoma – this includes everyone with bilateral and 15% of those with unilateral retinoblastoma. If you are not sure what type of retinoblastoma you had we recommend genetic screening as soon as possible.
  • Those who have undergone radiation treatment – the level of risk will depend on the dose of radiation given at the time. Your oncology consultant can advise you further on this.

People in these two groups will have an increased risk of developing sarcomas, i.e. tumours of the bones and soft tissues, within about 5-25 years of being treated for retinoblastoma. There is also an increased risk of developing other forms of cancer with the risk continuing into later life.

*Second cancers are often mistakenly referred to as “secondary cancers”. Secondary cancers are a result of cancer cells breaking away from a primary cancer which then settle in a different part of the body.

Looking after yourself – some suggestions

  • Be aware of the signs of cancer
  • Seek medical advice from your GP for any unexplained or persistent pain, lumps or new moles or changes to an existing mole
  • Wear sunscreen, avoid over exposure to the sun and don’t use sunbeds.
  • Do not smoke.
  • Make sure you are seen regularly in an oncology (cancer) follow-up clinic. If you are not currently being seen, ask your GP for a referral letter to the consultant oncologist at your local late effects centre. The referral letter should detail the treatment you had as a child – if available.

Though the increased risk of developing a second primary tumour could mean a number of different types of cancer, certain tumours are worth noting in more detail:

  • Osteosarcomas can arise in any bone in the body, but most commonly in one of the leg bones or in the bones of the orbit around the eye.
  • Soft tissue sarcomas can occur in the muscles of the face and scalp, or in the abdomen.
  • Melanoma, a cancer of the skin which can develop as a consequence of sun exposure. People who have a vision impairment should ask to be checked over regularly.

Medical advice should be sought for any unexplained lumps or pains, new skin moles or changes to an existing mole. Remind your GP that you have a higher risk of developing second primary tumours as you had Rb as a child. You can download our retinoblastoma leaflet for GPs here.

What patients and families can expect from their long term follow up team is explained in more detail in our after retinoblastoma page.