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Von Hippel Lindau

rae_rae's picture
rae_rae
Posts: 281
Joined: Oct 2010

Back in October I underwent testing for VHL as recommended by a genetics counselor since both my father and I had RCC in our 40's. It took me longer than imagined to fill the little vial up with saliva as bubbles do not count. Anyway, I am happy to report that I tested negative for the disease. I have taken the time to learn much about it and I must say I am so thankful I do not have it. It is one hereditary cause of RCC.

I was advised to tell my son, who is 23, to ask for a scan in his late 30's- early 40's and also that there could still be a genetic factor that they just haven't uncovered yet.

Rae

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Rae, very glad to hear you tested negative. I'm presently easing out of morphine withdrawal symptoms and seem not to have enough hours in the day (and night!). So maybe you can spare me the time trying to re-find the reference - I remember reading that research is indicating that many more occurrences of RCC may have a genetic origin. Can you confirm and, if so, can you point me to info. on the subject?

rae_rae's picture
rae_rae
Posts: 281
Joined: Oct 2010

TW,

This link is a good place to start for information about genetic factors and hereditary RCC. http://www.cancer.net/patient/All+About+Cancer/Genetics/The+Genetics+of+Kidney+Cancer

Rae

live life 4 u
Posts: 25
Joined: Dec 2011

Thanks for the link

live life 4 u
Posts: 25
Joined: Dec 2011

Thanks for the link

Txgrl
Posts: 24
Joined: Apr 2014

Did you have any risk factors for kidney cancer?

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

TXgrl... FYI you have posted to a posting that is from 2012.  Sadly we lost TW last year.. Rae Rae is still around though..  If you click on their ICON it tells you when they last were here..

Ron

rae_rae's picture
rae_rae
Posts: 281
Joined: Oct 2010

Hi Txgrl,

I really didn't have any risk factors for kidney cancer. My family just has sucky genes I guess, as my father had kidney cancer, my mom had uterine cancer, my brother had neck/throat cancer, and I've had kidney cancer and now we can add colon cancer to my list. On the bright side, none of the cancers in my immediate family have been fatal. Both parents are deceased but from other causes. Brother and I still going strong. I'm guessing there is still a genetic factor that is undiscovered. My son should have scans starting when he is 30 just to be safe. Of course I believe the western processed diet hasn't helped cancer risks. I am guilty of that, and after my bout this summer with sepsis from a perforated small intestine (after a colon resection), I am learning to change my diet drastically. (Finally).

icemantoo's picture
icemantoo
Posts: 1739
Joined: Jan 2010

Rae,

 

Keep fighting. You will survive Colon Cancer as well. My mother had colon Cancer in about 1972 and survived over 40 years. Because of that I get to take that test as well every 3 years now. The fun never ends.

 

Icemantoo

rlivingston59's picture
rlivingston59
Posts: 2
Joined: Aug 2014

My brother had kidney cancer in 1999, my sister had a radical AND a partial (both kidneys) this summer due to kidney cancer, and in 13 days I am having a radical on my right kidney due to kidney cancer. Doctor said that unless I have VHL disease (he says he doesn't think so) there is not a hereditary connection. My thought is that this is too much to be coincidental. Probably the hereditary link not discovered yet.

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Wow.. way too much Kidney Cancer to be coincindental.  It is either hereditary or environmental.  Suggest you contact NCI for info before making a surgery decision.  You may want to see if there is any high incidence of Cancer where you grew up as well.

Ron

todd121's picture
todd121
Posts: 718
Joined: Dec 2012

VHL isn't the only genetic cause of kidney cancer. There are several genes to look at. With this much kidney cancer in your family, you really should think about seeing a genetic counselor for testing. The probabilities are too huge for that much of such a rare cancer in your family. You must have either a genetic link, or a common environmental risk. The chances are just too small for it to be incidental.

If you're anywhere near NIH, I'd like into visiting them. I'm sure they would be interested in testing you.

Todd

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