My cerebellar hemangioblastoma was removed last June. Should I be genetically tested for Von Hippel-Lindau as a precaution? It shows in 20% of the tumours like what I had. I am thinking that my pancreas and kidneys should be checked out as well. What do you think?
VHL itself is extremely rare with an incidence of 1/36000. However, 20% of patients with VHL have no family history. It is easy enough to get screened if you are concerned. Screening can include an eye exam, and abdominal ultrasound, and a 24 hour urine test. If these are negative, VHL is unlikely.