Kidney tumours associated with BHD syndrome can be on one or both (bilateral) kidneys and may be single or multiple (multifocal). Usually BHD tumours are bilateral and multifocal.
Kidney tumours are most often detected from CT, MRI, or ultrasound scans. There are no established guidelines as to which test is recommend. Most recently, a study from 2009 suggested that an annual MRI may be the best option, if possible. An ultrasound scan might not be able to detect the smallest tumours and regular CT scans would give a high dose of radiation over a lifetime.
CT, MRI and ultrasound scans will not show pathology, i.e. what type of kidney tumour you have. These scans will only show whether or not there are growths on your kidneys, the number and size of growths, and whether the growths appear to be cysts or tumours. See Knowing what type of kidney cancer you have for more information on kidney pathology.
The tumours may be benign or cancerous/malignant. See Types and classification of kidney tumours and cancers for descriptions of the different kinds of benign and cancerous kidney tumours. Cancerous tumours should be removed as early as possible. The current recommendation is that benign tumours should also be removed if they are greater than 3 cm in diameter. Therefore, it is necessary that your medical team regularly monitors your kidneys. Regular monitoring will help your doctors to catch any cysts and tumours at an early stage, when Treatment and recovery will often be easier and quicker.
Publication date: September 2012
Review date: September 2014