Von Hippel-Lindau Syndrome

What can I do to manage my increased risk of tumours and cancer?

Frequent and regular screening is recommended for early detection of tumours/cancers, so that interventions or treatment can happen in a timely manner.

Screening

• General
  • Regular MRI scans focusing on the brain stem, spine and abdomen to check for tumours
  • Consider abdominal ultrasounds to detect for pancreatic tumours and kidney cancers
  • Report unusual symptoms (especially in your vision/hearing/balance) to your doctor
• Adrenal tumours (phaeochromocytomas)
  • Blood pressure measurement
  • Blood/urine test to test for hormone levels
  • Further imaging such as CT/MRI scans may be ordered when there are abnormal blood test results
• Eye tumours (retina angiomas)
  • Regular eye examinations by an eye specialist
  • Report unusual symptoms such as changes in vision
• Ear tumours (endolymphatic sac tumours)
  • Regular hearing tests
  • Further imaging (CT/MRI) may be ordered when hearing problems are reported

Your managing doctor(s) will discuss screening recommendations with you in greater detail. The age and onset of screening may depend on your personal and/or family history of cancer. Screening guidelines may change as more information is known.