http://www.bhdsyndrome.org/forum/introduce-yourself-to-the-forum/new-diagnosis-of-bhd-and-kidney-tumors/ 'Research and Support' Thu, 02 Sep 2010 16:46:57 +0100 http://wordpress.org/?v=2.8.4 hourly 1 http://www.bhdsyndrome.org/forum/introduce-yourself-to-the-forum/new-diagnosis-of-bhd-and-kidney-tumors/comment-page-1/#comment-134 Tia Tue, 27 Apr 2010 19:21:27 +0000 http://www.bhdsyndrome.org/?p=1613#comment-134 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. 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.

]]> http://www.bhdsyndrome.org/forum/introduce-yourself-to-the-forum/new-diagnosis-of-bhd-and-kidney-tumors/comment-page-1/#comment-97 stevenhinchliffe Thu, 28 Jan 2010 18:04:28 +0000 http://www.bhdsyndrome.org/?p=1613#comment-97 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. 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.

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