Anyone get genetic testing

daisybud
daisybud Member Posts: 541 Member
in Kidney Cancer #1

Just wondering if anyone got tested? I am 56 and never thought about needing it till my 32 year old daughter had colonoscopy and had 2 medium pre cancerous serrated adenoma sessile polyps.  lynch syndrome is genetic syndrome that is hereditary for colon cancer and other cancers.. kidney cancer is one of the familiar hereditary cancers included in lynch syndrome along with uterine and few others.  if I understand there's a 50% chance of passing it to a child.

Just curious if anyone was tested and can give feedback.  She's getting tested and I am asking to get tested at my next followup.

Kim

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Comments

  • hardo718
    hardo718 Member Posts: 853 Member
    #2
    I have not

    But, am very curious Kim as to what you & your daughter will find out.

    Please keep us posted.  I'll keep you and yours in my prayers,

    Donna~

    P.S. cute pup

  • sblairc
    sblairc Member Posts: 585 Member
    edited December 2016 #3
    Lynch syndrome.

    This is good information. Thank you. Is it clear cell kidney cancer or another type? Please know we are keeping your daughter in our thoughts. I am glad it is pre-cancerous. 

  • daisybud
    daisybud Member Posts: 541 Member
    #4
    I have

    I have only seen kidney cancer in general not specific to clear cell, which is what I had.  I just know from research we have been doing that lynch syndrome if diagnosed is connected to colon and a few other cancers. 

    I will get back with more info as soon as we know.

    Kim

  • medic1971
    medic1971 Member Posts: 225 Member
    edited December 2016 #5
    I am

    In Jan I'm going back to MD Anderson for genetic testing.  I'll post anything I find out.  I had two chromophobe spots on my right kidney.  They were small, but still... I want to make sure there is nothing I could have passed on to my  little girl.

  • sblairc
    sblairc Member Posts: 585 Member
    #6
    medic1971 said:

    I am

    In Jan I'm going back to MD Anderson for genetic testing.  I'll post anything I find out.  I had two chromophobe spots on my right kidney.  They were small, but still... I want to make sure there is nothing I could have passed on to my  little girl.

    Interesting. See my post.

    Unless you have very specific syndromes, you shouldn't need genetic testing. I had twe oncologitsts and a geneticist tell me chromophobe is sporadic. 

  • lobbyist0724
    lobbyist0724 Member Posts: 515 Member
    #7
    In Canada, we do have a

    In Canada, we do have a Canadian Consensus Guideline on genetic screening for kidney cancers. Please see the link below, Table 2 in the document specifically lists WHO should have the genetic screening done. (Generally this means if diagnosed < age 46 and/or non-clear cell rcc and/or bilateral tumours – both kidneys and/or unusual pathology, and/or other renal tumours in the family.)

    Canadian Guideline on Genetic Screening for Kidney Cancers https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3854468/

  • stub1969
    stub1969 Member Posts: 986 Member
    #8
    Costs

    My question: Does insurance cover the cost of the genetic testing?  If not, what is the cost of the testing that I can expect to pay?  I'm with Medic1971 on this one.  My greatest fear is that I've passed the disposition of this terrible disease on to my children.  If there is a way to determine this then we can develop a plan with our gp.

    Stub

  • todd121
    todd121 Member Posts: 1,448 Member
    #9
    I did it recently

    I went to Cedars Sinai for genetic testing. They worked with me on getting it paid for or done cheaply At first they were going to do a very limited series of tests. My insurance company declined to pay for it at first because the said it wasn't "treatment". In that case, the genetic counselor was going to choose a cheaper lab since I'd pay out of pocket. It was going to cost around $3-400.

    However, when I went in for my counseling and he did my history, because my mother and grandmother have both had breast cancer, my mother had uterine cancer, and my grandmother had lung cancer, he was able to justify full testing and also get the insurance to pay for it. So I had a pretty complete series of tests.

    They didn't really find anything conclusive. From the genes they know, my cancer doesn't look to be hereditary.

    I did it mainly for my sons. Half my medical history is unknown because I'm adopted on my dad's side and out of touch with that family, so I wanted to look into it for my children.

    If I'd done the limited testing going to the cheaper lab, it would've been $300-400. If he'd gone with his regular lab, it would have cost double that. I don't know what the full testing would have cost since my insurance covered it all.

    At the seminars I've attended, they've repeatedly said that 90% of these cancers or more are not inherited, but due to mutations in genes as we age and not passed on to our children. If you know your family's history on both sides pretty well, it's probably not necessary to get tested. I did it for peace of mind.

    If you're interested, I'd find a cancer center or cancer research facility and ask to speak to a genetic counselor. At least that's what my interface at Cedars Sinai was called.

    Regards,

    Todd

  • daisybud
    daisybud Member Posts: 541 Member
    edited December 2016 #10
    Me too

    I Don't  want to have passed anything to my children either..  Let us know medic and I will also post anything I find out too. 

  • Dave418
    Dave418 Member Posts: 95 Member
    edited December 2016 #11
    I had genetic testing done

    I had genetic testing done since I was diagnosed at 37. I was tested for 19 (if i remember well)  genes to see if there was something wrong. I too wanted to know if my child's were at risk. Everything was fine. As for the cost, I can't tell as it was covered by insurance. 

  • sblairc
    sblairc Member Posts: 585 Member
    edited December 2016 #12
    lobbyist0724 said:

    In Canada, we do have a

    In Canada, we do have a Canadian Consensus Guideline on genetic screening for kidney cancers. Please see the link below, Table 2 in the document specifically lists WHO should have the genetic screening done. (Generally this means if diagnosed < age 46 and/or non-clear cell rcc and/or bilateral tumours – both kidneys and/or unusual pathology, and/or other renal tumours in the family.)

    Canadian Guideline on Genetic Screening for Kidney Cancers https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3854468/

    Again, what I reiterated in my post

    Specific syndromes. NOT JUST NON-CLEAR CELL. 

  • lobbyist0724
    lobbyist0724 Member Posts: 515 Member
    #13
    lobbyist0724 said:

    In Canada, we do have a

    In Canada, we do have a Canadian Consensus Guideline on genetic screening for kidney cancers. Please see the link below, Table 2 in the document specifically lists WHO should have the genetic screening done. (Generally this means if diagnosed < age 46 and/or non-clear cell rcc and/or bilateral tumours – both kidneys and/or unusual pathology, and/or other renal tumours in the family.)

    Canadian Guideline on Genetic Screening for Kidney Cancers https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3854468/

    For the list of defined

    For the list of defined hereditary RCC syndromes, please.refer to Table 1 in the document 

  • Allochka
    Allochka Member Posts: 1,074 Member
    #14
    Now you've got me scared

    Now you've got me scared about our little girl, since my husband was diagnosed at 36... I'll think about it...

  • todd121
    todd121 Member Posts: 1,448 Member
    edited December 2016 #15
    Allochka said:

    Now you've got me scared

    Now you've got me scared about our little girl, since my husband was diagnosed at 36... I'll think about it...

    It's not likely

    Unless you have genetic kidney cancer, it's not likely you've passed it on. Something between 0-10% of these cancers are genetic. If you had it, you probably would have had relatives that had kidney cancer (or other cancers) as well.

    Todd

  • Allochka
    Allochka Member Posts: 1,074 Member
    #16
    Thanks, Todd, that put my

    Thanks, Todd, that put my mind at ease a bit!

  • brea588
    brea588 Member Posts: 240
    edited December 2016 #17
    Hi

    I had genetic testing in 2013  I  had Renal Cell ca in dJune 2012 and very next year had colon cancer and the cell and cancers were not related to each other, so that is why the genetitist recommended testing.  I  am high risk for 7 more cancers, and they recommended that my sons and my siblings have colon screens and kindney scans done.  I still have the adenomas in the colon on every colonoscopy each year. SO i am on frequent surveillance screenings every 6 months.

  • pepper43
    pepper43 Member Posts: 16
    #18
    Testing

    I received BreastNext testing early on in my treatment days. Thankfully, all were negative. I am thinking of asking my MO to test for Birt–Hogg–Dubé syndrome= as this particular syndrome is associated with rare form of RCC I have (Chromosobe).

  • Vivaldi
    Vivaldi Member Posts: 27
    #19
    Birt Hogg Dube

    i got referred to the genetics program as the fourth person in my family with a kidney tumour. Mine actually was an oncocytoma, the other three were not. I was tested and have no hereditary cancer syndromes that are known. That said, they indicated there are other genetic factors they do not yet test for that can result in multiple family kidney neoplasms. So no answers really.  Mine was covered, the whole program screens for other cancer risks as well and gave me a list of screening I need for the future. 

  • pikkinickens
    pikkinickens Member Posts: 1
    #20
    I did...

    I'm new to all of this... I went to the ER on the 19th of January, had a radical left nephrectomy on the 30th and was diagnosed with stage 2, grade 3 renal cell carcinoma at the age of 37.  I just had the blood draw done for the genetic testing this past Friday (yesterday) and am anxiously awaiting the results.  

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    #21
    pikkinickens said:

    I did...

    I'm new to all of this... I went to the ER on the 19th of January, had a radical left nephrectomy on the 30th and was diagnosed with stage 2, grade 3 renal cell carcinoma at the age of 37.  I just had the blood draw done for the genetic testing this past Friday (yesterday) and am anxiously awaiting the results.  

    Welcome Pikkinickens

    Sorry to meet you here. You're a bit young for all this, but at least your lump sounds like a bit of a tiddler ( I know it wont feel that way). Mine was 10cm and others on here have had much larger. Not that we like to boast!

    Anyway good luck with your results

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