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Date of last update: 10/21/2017.

Forum Name: Lung Cancer

Question: Lung Cancer or Von Hipple Lindau disease?

 rcscott65 - Sat Jan 10, 2009 8:56 pm

My mother recently went in to the doctor and had a CT scan that showed a 2.7cm vascular spot on her lower right lobe. She then went for a PET scan and was clear all over except for the one spot. Apparently this same spot was on a scan 4 years ago and grew only 2mm. They are saying it is lung cancer, but could it be Von Hipple Lindau disease given that I (the daughter) and my two children have the disease? We have all been DNA tested, but my parents never did. They want to do surgery, but with VHL, the lesions are vascular and bleed extremely bad. Advise?
 Dr. Tamer Fouad - Mon Jan 12, 2009 12:26 pm

User avatar Hello,

Von Hippel-Lindau is a rare genetic disorder which is characterized by the occurrence of hemangioblastomas which are tumors of the vascular system as you mentioned. These vascular tumors occur mainly in the CNS especially the cerebellum, spinal cord and retina (which is considered part of the CNS).

I think it is unlikely that your mother's tumor is a manfestation of Von Hippel-Lindau. First of all an angioma (vascular tumor) would appear quite clearly on CT scan. Certain criteria of solid nodules may suggest malignancy. These include size (>2cm are more likely to be malignant). Border of the nodule is speculated. The location of the tumor can help. The density of the tumor on CT. The doubling time which is the time it takes for a nodule to double in volume, so this is where the comparison between the old and new CTs comes in.

Another important point is that a PET scan is a highly sensitive test and can strongly suggest a cancer versus an inflammation. A PET scan would not be positive in the case of an angioma.

Given her age and her investigation results which I am sure her doctor must have gone through, she is lucky to be at an early stage where surgery is an option.

Best regards,

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