VHL disease is different in every person, so there are no universal treatment recommendations. Appropriate treatment options can only be determined by careful evaluation of each person’s unique situation — symptoms, test results, imaging studies, and general physical condition. Early diagnosis and regular surveillance is key to receiving the best treatment. If you, your family partner or your children have a family history of VHL disease, it is important to talk to your doctor.
Your medical team will advise you on the best diagnostic tests to use, and the best course of treatment. There are a number of very effective treatments and more are being discovered. If you are not being treated at one of the VHL Clinical Care Centers you may want to seek a second opinion from one of these centers before receiving treatment for a VHL tumor. Standard treatments for the same tumors in patients without VHL can be quite different from those recommended for VHL.
In addition to physical examination by your doctor, evaluation of suspicious areas will probably involve some combination of magnetic resonance imaging (MRI), computed tomography (CT) scanning, ultrasound scanning, and angiography. The objective is to provide diagnostic pictures of both the blood vessels and soft tissues of your body. Positron Emission Tomography (PET) scanning may be used to determine the activity level of certain kinds of tumors.
If a tumor is identified, treatment may include surgery to remove potentially malignant tumors before they become harmful to other tissues. Medical advances are providing surgical alternatives that are less invasive, but may not be the right option for you. Talk to your doctor, or seek a second opinion, to discuss the best options.
In addition to early diagnosis, regular surveillance and treatment of tumors, healthy life style, including diet and exercise, can help you manage your VHL. For more information, check out the Health and Wellness section of the website.