Von Hippel Lindau

rae_rae
rae_rae Member Posts: 300 Member
in Kidney Cancer #1
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

Comments

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #2
    Genetics and RCC
    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
    rae_rae Member Posts: 300 Member
    #3
    Texas_wedge said:

    Genetics and RCC
    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?

    TW,
    This link is a good
    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
    live life 4 u Member Posts: 25
    #4
    rae_rae said:

    TW,
    This link is a good
    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

    genetic factors
    Thanks for the link
  • live life 4 u
    live life 4 u Member Posts: 25
    #5
    rae_rae said:

    TW,
    This link is a good
    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

    genetic factors
    Thanks for the link
  • Txgrl
    Txgrl Member Posts: 31
    #6
    Did you have any risk factors

    Did you have any risk factors for kidney cancer?

  • GSRon
    GSRon Member Posts: 1,303 Member
    #7
    Txgrl said:

    Did you have any risk factors

    Did you have any risk factors for kidney cancer?

    FYI

    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
    rae_rae Member Posts: 300 Member
    #8
    GSRon said:

    FYI

    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

    Risk factors

    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
    icemantoo Member Posts: 3,361 Member
    #9
    rae_rae said:

    Risk factors

    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).

    Keep fighting

    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
    rlivingston59 Member Posts: 2
    #10
    rae_rae said:

    Risk factors

    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).

    My brother had kidney cancer

    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
    GSRon Member Posts: 1,303 Member
    #11
    rlivingston59 said:

    My brother had kidney cancer

    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.

    Wow.. way too much Kidney

    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
    todd121 Member Posts: 1,448 Member
    #12
    rlivingston59 said:

    My brother had kidney cancer

    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.

    Genetic Counseling

    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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