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My daughter found out she had VHL in 2004.She had part of her pancreas rmoved in Jan.2006. In Oct.2006 she had Brain surgery for a malignant tumor.Now the cancer has gone to her liver. They want to do a liver embolization. She is 39. Has anyone had this done? If so how did you come through it? What after effects did you have? For how long. Thank You- We need to hear from someone who's been through it
Before proceeding, I would strongly suggest that she needs to talk with a specialist in VHL. I can give you some names. There is a possibility that her situation is being misinterpreted.
VHL brain lesions do not metastasize. We do sometimes see artifacts on the liver, but they are not mets. You need an expert to review these scans before doing anything invasive.
Best wishes,
Joyce
The doctor's believe it's from the pancreas. And they do know about VHL. Sloan Kettering Hospital just opened a VHL clinic in January, and Judy's doctors have known about vhl since she was diagnosed in Sept., 2004. So if anyone has had a Liver Embolization - please let me know. Thank You
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