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ccRCC and VHL

jhsu's picture
Posts: 80
Joined: Sep 2009

Does anyone out there identify their clear cell RCC is related to VHL, http://www.vhl.org/profinfo/kidney.php?

I was diagnosed with ccRCC at age of 50. Early this year my mother, age 90, also found a tumor in her left kidney. This put me into thinking that my family may have genetic defect(s) for kidney cancer.


Posts: 45
Joined: Dec 2009

My oncologist wanted me to do the VHL testing as I had clear cell renal carcinoma on Right kidney in 2005, at age 52 (removed kidney in early 2006). I was told in 2009 I have growth on my left kidney. Having Cryoablation of it in April 2010. There is no known history of other family having this. So I decided with the help of talking with more than one Dr not to test. IF I should have further growths I may consider it. There is a great support group for people with VHL and I actually received a phone call from someone on the support line. So friendly and so helpful! Keep doing your research and give the VHL group a call. Keep us posted as to your findings as it may help more of us. With Prayers!

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