I was recently diagnosed with BHD and went through screening for kidney tumors. The CT scan found two small(largest 1 1/2 cm) on my left kidney. The first urologist recommended partial nephrectomy with subsequent serial scanning, which I initially felt was a reasonable approach. I have had a second opinion with a urologist who has more knowledge of BHD due to his affiliation with a local university hospital. The second opinion physician suggest waiting and observing and removing the tumors when they approach 3cm. This recommendation was based on the understanding that in BHD patients, tumor recur at a rate of 25% . He felt it is better to stretch the life of the kidney by waiting. Is there information out there re the recurrence rate status post partial nephrectomy in a BHD patient? Is there good science supporting a wait and see approach? I would appreciated any comments and information.
my mother and i were diagnosed with bhd in 2007. about 16 years ago she had part of her kidney removed ( she had the other removed years before, but no one knew why ) which we now believe was due to bhd. she has remained well apart from numerous collapsed lungs untill her death in november last year of kidney failure. Do not know if this helps but i hope it does.
Depending on the type of tumor (there are 3 or 4) it is better to wait if it is the more non-aggressive type of carcinoma. This is usually determined by monitoring via CT every 6 to 12 months (altho that also has its draw backs). I know it sounds like a long time but they dont typically do a biopsy like other cancers – once they are in the kidney they just want to get it done. Also, with BHD the tumors never go away – the are bilateral multifocal. You get many tumors on both kidneys. So, you have to be sure that the urologist or nephorologist treating you has the latest information. Currently, the preferred and recommended method is nephron sparing surgery for patients with BHD. Check the NIH NCI website for more info. Dont let cut you without making sure they know what they are dealing with. Also, if you get a CT have them check your lungs for the cysts. They may tell you they are belbs – but they arent. They cysts do have a different histology – again make sure the pulmonologist you work with has the latest info. And no you cant see the lung cysts with an x-ray – refuse the x-ray and just go with a CT. Good luck Tia BHD Calif.