Googling Again

sandy23
sandy23 Member Posts: 143 Member
in Kidney Cancer #1

I have tried to stay away from Google, but these last few days have been so full of worry.

For those of you that found your cancer at age 46 or under, did you have to undergo genetic testing?  My husband is 46.  According to Google, that means he will have to have genetic testing because there is a very high likelihood that the cancer will also form in the other kidney.  The doctor never mentioned this.

I should not have googled.  Now I am worried about the kids and my husband having this happen.

Comments

  • myoung790
    myoung790 Member Posts: 75
    edited January 2017 #2
    Hi.  I was diagnosed at 40

    Hi.  I was diagnosed at 40 and there was no mention of genetic testing.  I was also not told that there was an increased risk of it spreading to the other kidney.  In fact, I was told the opposite.  I was told the chances of it spreading to my other kidney was minimal.

    I do have a family history of kidney issues, specifically with females, but none have had cancer.  

    I would think that if your doctor did not mention it, then there is nothing to worry about.

     

  • sandy23
    sandy23 Member Posts: 143 Member
    #3
    myoung790 said:

    Hi.  I was diagnosed at 40

    Hi.  I was diagnosed at 40 and there was no mention of genetic testing.  I was also not told that there was an increased risk of it spreading to the other kidney.  In fact, I was told the opposite.  I was told the chances of it spreading to my other kidney was minimal.

    I do have a family history of kidney issues, specifically with females, but none have had cancer.  

    I would think that if your doctor did not mention it, then there is nothing to worry about.

     

    Thank you so much for your

    Thank you so much for your response.  That does make me feel a bit better.  Do you mind if I ask how long it has been since you had yours removed.

  • myoung790
    myoung790 Member Posts: 75
    edited January 2017 #4
    sandy23 said:

    Thank you so much for your

    Thank you so much for your response.  That does make me feel a bit better.  Do you mind if I ask how long it has been since you had yours removed.

    Not at all.  It has been a

    Not at all.  It has been a little over 2 years since I was diagnosed.  My tumor was small at 4 cm, but it was in the kidney upper pole invading the renal capsule.  Unfortunately, I had to have the kidney removed and not just a partial.  My past 2 scans have both been cancer free.  I do have a large cyst on the remaining kidney in the same spot that we are watching, but it was there when the tumor was there and it is a cyst.  

    My mother has polycystic kidney disease and I have cystic kidneys as well.  I was the lucky one who got the cancer diagnosis.  I have twin almost 9 year old daughters, so I understand your worries.  I've definitely been there.  

  • MyraC
    MyraC Member Posts: 8
    #5
    My husband was diagnosed at

    My husband was diagnosed at with clear cell RCC at 46, his dad died of RCC in 1993. We also have a 5 yr old son. My husband's urologist and oncologist said he would undergo genetic testing because this could have been passed on to our son. No one mentioned having it done for the sake of his remaining kidney though. The doctors said that if my husband and son carry the marker my son would just have to start having scans done in his thirties and compared it to woman having mammograms in their 40s.

  • jason.2835
    jason.2835 Member Posts: 337 Member
    #6
    Pretty certain that is an alternative fact

    sandy23,

    I was 35 when I was diagnosed.  No mention of genetic testing.  I think genetic stuff comes into play more when there is a solid family history of kidney cancer.  In my case, there is a family history of cancer but not kidney cancer.  It was never brought up to me that genetic testing was a need.  It's certainly something that, if you really wanted to, is worth looking into with your oncologist because the best way to treat cancer is with information; the more information an oncologist has, the better he/she can chart a path of treatment going forward.  You most likely stumbled upon a very specific study that was done.

    - Jay

  • pepper43
    pepper43 Member Posts: 16
    #7
    I requested genetic testing

    I actually requested genetic testing after my nephrectomy revealed chromophobe renal cell carcinoma. This type could be a result of a genetic mutation called Birt-Hogg-Dube Syndrome. I  meet with oncologist's genetic counselor next week and will actually further request tests for any other genetic mutation associated with this type of cancer. I've been genetically screened before- my kidney mass was discovered after a breast cancer diagnosis. Since I was 43 at the time, genetic testing was standard- nothing came up. I'm 44 now. From the research I've done on BHD, there may be a breast cancer connection as well (though not firmly established so this particular mutation was NOT tested during original bc genetic screening).

  • pepper43
    pepper43 Member Posts: 16
    #8

    Remember too genetic testing is expensive so make sure your provider clears it with insurer first!

     

  • sandy23
    sandy23 Member Posts: 143 Member
    edited January 2017 #9
    Thank you all so much for

    Thank you all so much for your responses.  He is the first in his family to have kidney cancer, or just about any cancer at all.

    You guys are all so very helpful.  Thank you.

  • Allochka
    Allochka Member Posts: 1,062 Member
    #10
    My husband was diagnosed at

    My husband was diagnosed at 36, no testing.

    please stay away from Google, it can be evil. I am a hypochondriac, so I KNOW :-)

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    #11
    I have always maintained

    I have always maintained that hypochondriacs should be excused cancer.

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