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Close monitoring and regular screening for new tumor growth are an important part of your von Hippel-Lindau (VHL) care plan, ensuring treatment can be provided as early as possible.
We offer the most advanced diagnostic methods for von Hippel Lindau disease, including precise imaging techniques.
In addition to comprehensive genetic testing and counseling for those with a family history, our VHL Clinical Care Program’s screening for new patients includes abdominal ultrasound, ophthalmic and neurological examination, serum catecholamine measurement, and an auditory symptom questionnaire.
Active surveillance is the testing of those at risk for VHL who do not yet have symptoms, or who are known to have VHL but do not yet have symptoms in a certain area of the body. The unaffected organs should still be screened.
Your VHL team will create a surveillance schedule tailored to your individual needs and family history, which may sometimes be done by physicians familiar with individual patients and their family history. More frequent testing may be needed to track the growth of known lesions.
Based on guidelines from the von Hippel-Lindau Alliance, patients who have had a DNA test and do not carry the altered VHL gene may be excused from testing. Even with the VHL gene, once an individual has reached the age of 60 and still has no evidence of VHL on these surveillance tests, imaging tests may be reduced to every two years for MRI.
Screening surveillance may include on or more of the following:
Our cancer team is available 24/7. Call us at (888) 777-4167.
Henry Ford Health System is committed to ensuring our Deaf or hard-of-hearing patients and visitors have equal access to all services. We provide the appropriate auxiliary aids and services, including qualified sign language interpreters, TTYs and other assistive listening devices, at no cost. To request assistance, call 313-916-1896 or email CommunicationAccess@hfhs.org.