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Checking in - genetic testing

LMCRJB13's picture
LMCRJB13
Posts: 84
Joined: Oct 2017

Hello all - I wanted to take a moment to check in and say hello!  Life has been pretty busy - I read often but do not always comment.  You are all always on my mind.

Recovery after my second surgery went quite well...back to work at five weeks and doing great.  I get fatigued at times but that is to be expected after a partial nephrectomy of each kidney in a span of two months.

I finally heard back from the genetic counseling and testing folks at the Upstate Cancer Center here in Syracuse.  They were booking into July but got me in sooner as a "special case."  My young age, bilateral RCC and a paternal aunt passing from RCC all make me special.  Here I thought it was my good looks, charm and humor :-)  My initial appointment is tomorrow.

Other than the genetic testing, I am scheduled for scans and follow-up with my urologic oncologist in the summer.  

Living as normally as possible...taking each day as it comes, getting out there and having fun...and of course taking nothing for granted.

Best to all!

 

Ryan

 

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

Glad you're getting that testing.

I got mine done last year. Even though it wasn't likely mine is genetic, I wanted to know for my kids. Also, I'm missing family history on two important branches of my family. My maternal grandfather died in the 40's and I have no contact with his family. Also, I'm adopted and no contact with my bio dad's family to speak of. Fortunately they didn't find anything.

Genetic RCC is its own animal. If it turns out you have it (maybe you know this) there are specialistst at NIH that have studied this in such detail that this is one of the best understood types of RCC (I suppose it depends on which type you have). If you turn out to have any of the genetic forms, might be worth a consultation by those people or people that follow their work closely.

Best to you,

Todd

Angiebby75's picture
Angiebby75
Posts: 209
Joined: Aug 2017

I need to also look into this for my kids. 

Steph85's picture
Steph85
Posts: 166
Joined: Feb 2018

I posted pretty much the same thing lol. I'm going to do genetic testing as well. I'm 32 and I had a lot of family members who have had or past from cancer. Lost track of what kind. Genetic testing seems like a good idea just so I can be prepared and my kids as well. Anyway, stay positive! Cheers to having a second chance at a healthy life and never take anything for granted! 

Take care!

 

Stephanie

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