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RCC and VHL

Miss Nette's picture
Miss Nette
Posts: 2
Joined: Apr 2015

Im a new member!  Hello.  Im 41 years old and was diagnosed with RCC at age 32.  4cm clear cell carcinoma stage I confined to kidney. Right side partial nephrectomy.   All has been clear for the last 10 years.   Recently had a run in with a kidney stone and had a ultrasound which said I had renal cyst 4.5 cm.  A 6cm FNH on my liver.  Several small hemangiomas and also a 3 cm cyst on liver.  I followed up with MRI  Nothing solid.  I was sent over to Stanford oncology for follow up on the Focal nodular hyperplasia .  They told me it was most likely benign but now they want me to follow up with genetics for possible Von Hippel Lindau disease considering my family history and my age.  My mother died at age 59 from glioblastoma multiforme" brain cancer".  Im very nervous since I have four children and VHL can be hereditary.  Anyone have any insight?  Thank you!! 

 

 

NewDay's picture
NewDay
Posts: 273
Joined: May 2012

Hi Miss Nette,

While I don't have any insight as to whether these findings suggest cancer, I do strongly suggest that you try calling the genetics counselor at NIH.  They specialize in hereditary kidney cancer.   Her name is Lindsay Middleton and her number is 301-402-7911.  Since they are THE best, you can be 100% sure that you are getting the best advice and treatment.

Kathy

Miss Nette's picture
Miss Nette
Posts: 2
Joined: Apr 2015

Thank you soo much Kathy.  I will be seeing genetics here at Stanford beginning of May but I will take your advice as well.  =) 

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