It is necessary to send a sample of your tumour to a pathology lab for testing in order to determine the type, classification, state and grade. For the test, it is necessary to first surgically remove the tumour (by nephrectomy or partial nephrectomy). Then the pathology result will tell you what kind of cancer, if any, you have. If the first result is not clear, you may want to ask that a section of your tumour be sent to a different lab for a second opinion (with details given below).
Different family members who have BHD syndrome may have different types of kidney tumours. For example, one may have a papillary tumour and another may have an oncocytoma. You won’t be able to tell what type of cancer you have by looking at another family member’s pathology results.
Second opinion on kidney pathology
There have been cases when the pathology of a BHD patient has been incorrectly identified. It may be a good idea to get a second opinion on your pathology.
If you are in the United States, you can request that a test be done at the U.S. National Cancer Institute, at no cost to you. It is best that your doctor or pathology lab ask for this test, as often the lab will prefer that you not arrange it yourself.
For more information, contact:
Maria J. Merino-Neumann, M.D. Head, Surgical Pathology Section
Email: mjmerino@mail.nih.gov
Phone: 301-496-2441
