Genetic testing question

Deanie0916
Deanie0916 Member Posts: 616 Member
in Kidney Cancer #1

Hi everybody...I haven't been on in quite awhile and I'm sorry for that. I am doing ok. Still NED almost 4 years out. My younger sister was just scheduled for a partial nephrectomy. She is in shock and processing all of this. She has a tumor 2.8 cm and another subcentimeter one that will be removed by robotic surgery. She also had a bout with the flu in early March and has GBS and Transverse Myelitis, leaving her paralyzed. Any prayers or good wishes lifted up for her are appreciated. My question is...have any of you had this happen to more than one immediate family member? The surgeon is recommending genetic testing for both of us in the future. I really appreciateyour views and advice and input. 

Comments

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    #2
    Prayers

    I just wanted to respond to your post and send kind thoughts and prayers your way.

    My husband has no family history of RCC.  They declined his request for genetic testing.  Instead they suggested our kids get ultrasounds when they are ten years younger than the age my husband was diagnosed.  

  • eug91
    eug91 Member Posts: 471 Member
    #3
    I had genetic testing done-

    I'm so sorry about your little sister. But thankfully it sounds like they caught it early - and thankfully she has you to help her with what to expect. 

    As for me, my urologist thought it'd be a good idea to get genetic testing because I was diagnosed at a younger age (wee, when 44 is considered young). I talked to a doctor who explained everything to me and went over my family history. My mom's side of the family has a lot of cancer occurences, especially at younger ages, but none of these cancers are known to be genetic. We went ahead with genetic testing (saliva in a tube) and nothing was found. It doesn't necessarily mean there is no genetic component - it just means that they didn't find anything that they CURRENTLY know as being genetic. Anyways, the process was harmless and easy, so if your insurance covers it, I would do it. 

    Congrats on your four years - heres to many more! Sending prayers and good thoughts to your sister! 

  • AliceB1950
    AliceB1950 Member Posts: 237 Member
    #4
    I had genetic testing done. 

    I had genetic testing done.  My maternal grandmother had uterine cancer and I had endometrial/uterine cancer.  My mom and a paternal aunt had breast cancer and I had breast cancer. My dad had kidney cancer and I had kidney cancer.  The testing showed no genetic connection, but my insurance wouldn't pay for a really in-depth test, just the standard one.  The genetic counselor said I could pay out of pocket for the detailed testing, but for me, it's not really worth it.  My optional body parts have already been removed.  Sending positive vibes to you and your sister.

  • Deanie0916
    Deanie0916 Member Posts: 616 Member
    #5
    a_oaklee said:

    Prayers

    I just wanted to respond to your post and send kind thoughts and prayers your way.

    My husband has no family history of RCC.  They declined his request for genetic testing.  Instead they suggested our kids get ultrasounds when they are ten years younger than the age my husband was diagnosed.  

    Thank you

    For your response. Doing the ultrasounds earlier sounds like a good idea. Thank you for your prayers for my sister.

  • Deanie0916
    Deanie0916 Member Posts: 616 Member
    #6
    eug91 said:

    I had genetic testing done-

    I'm so sorry about your little sister. But thankfully it sounds like they caught it early - and thankfully she has you to help her with what to expect. 

    As for me, my urologist thought it'd be a good idea to get genetic testing because I was diagnosed at a younger age (wee, when 44 is considered young). I talked to a doctor who explained everything to me and went over my family history. My mom's side of the family has a lot of cancer occurences, especially at younger ages, but none of these cancers are known to be genetic. We went ahead with genetic testing (saliva in a tube) and nothing was found. It doesn't necessarily mean there is no genetic component - it just means that they didn't find anything that they CURRENTLY know as being genetic. Anyways, the process was harmless and easy, so if your insurance covers it, I would do it. 

    Congrats on your four years - heres to many more! Sending prayers and good thoughts to your sister! 

    Thank you for the encouragement!

    We have had a lot of cancer in our family one of the oncologists asked if we lived over on old radioactive dump! We will check the genetic testing out if insurance will cover. Thanks for your response I know a little more what to expect. You are a very encouraging presence here thank you.

  • Deanie0916
    Deanie0916 Member Posts: 616 Member
    edited August 2020 #7
    AliceB1950 said:

    I had genetic testing done. 

    I had genetic testing done.  My maternal grandmother had uterine cancer and I had endometrial/uterine cancer.  My mom and a paternal aunt had breast cancer and I had breast cancer. My dad had kidney cancer and I had kidney cancer.  The testing showed no genetic connection, but my insurance wouldn't pay for a really in-depth test, just the standard one.  The genetic counselor said I could pay out of pocket for the detailed testing, but for me, it's not really worth it.  My optional body parts have already been removed.  Sending positive vibes to you and your sister.

    Thank you

    That helps to know there are different levels of testing. Appreciate your kind response.

  • Deanie0916
    Deanie0916 Member Posts: 616 Member
    edited November 2020 #8
    I did have genetic testing done

    And I have a mutation called Chek2 which seems to increase the probablity if breast, colon and prostate cancer. They don't know if it is connected tonkidney cancer. I think my sister will do the test too and we'll see if she has chek2 also. Thanks for your support and encouragement.

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