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Vivaldi
Posts: 20
Joined: Jun 2013

First I want to say thanks to everyone here who have posted.  As a fairly new kidney cancer owner, I had lots of questions, doubts, fears that I found answered, and assuaged by your posts.  My tumour was found accidentally by CT for a suspected kidney stone on Christmas Eve. It turned out the flank pain was shingles but in the meantime......the er doc told me there was a mass, I asked him if it was kidney cancer and he said he did not know.  I told him my dad died of kidney cancer.  He looked down and walked away.  Five weeks ago I had a partial nephrectomy, next week is my check up and I get the pathology then.  My tumour was not that big, 3.5 cms so I expect it will be stage one.  That is good news and from reading here I know the prognosis is great for stage 1.  What I don't know is how my family history impacts that, or if it does.  I am the fourth confirmed kidney cancer in my family....my dad, his dad and my cousin, on my dad's side.  We also know there are others that were diagnosed with abdominal cancers but don't know the origin. My urologist is sending me for genetic testing.  He says there is no way four people in one family can have it without there being a genetic component.  I do not know type or grade on the other three, it has been twelve years since the last one died.  Does anyone know if family history has any impact on whether or not reoccurrence is possible with a stage one tumour?  I want to be excited about getting it out and getting on with my life, partially nephrectomy is not the most fun I have had, but reading here really got me over the hump.  I found it helped my recovery to understand my pain and fatigue were normal and not to push too hard.  Thanks!

NanoSecond's picture
NanoSecond
Posts: 551
Joined: Oct 2012

Yes, from what you describe it is very likely you may have a form of hereditary RCC.

Here is a good overview on the subject:

http://ndt.oxfordjournals.org/content/19/12/2954.full

If you are in the USA I believe the NIH (National Institutes of Health) may be beneficial to contact.

You might also consider joining SmartPatients.com.  I am certain you will find lots of expertise over there concerning various hereditary forms of RCC.

Best wishes,

 

-N

icemantoo's picture
icemantoo
Posts: 1598
Joined: Jan 2010

Viv,

 

Sorry I have no insight on hereditary factors.There also could be enviormental factors or smoking which could be present among the family. It is good that they found it early and at 3.5cm there is no excuse other than to have a long happy  life. Sorry about that initiation. It does tend to hurt.

 

 

Icemantoo

Vivaldi
Posts: 20
Joined: Jun 2013

Thanks for the links I will look up both.  It is kind of a weird thing, especially since I have a newly found breast mass as well.  Waiting on a radiology report and a biopsy from that.  I am hoping the kidney thing is done and over, having a hereditary factor would not be good, I have children.  Not really the legacy I planned.....

Vivaldi
Posts: 20
Joined: Jun 2013

Iceman too, I have read a lot of your posts.  Thanks for the positive vibe.  Yes, the initiation is......less than pleasant.  I am a pretty tough cookie, but I was surprised at how much losing half a kidney takes out of you.  I am not in the US, I am in Canada.  My urologist has enrolled me in a study, that is how I am getting the genetic testing done.  Two of the three were non smokers, so not sure ow that plays out.  Filling out the questionnaire for the study, there was a tn of cancers on that side.  I guess I should have chosen better ancestors.......I had another question.......after my surgery I have a lot of leg pain n that side.  Initiall I did have numbness in the thigh, but this is "in the bone" above and below the knee.  Is this a normal side effect?

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