Genetic Testing - Should I do it?

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BZW
BZW Member Posts: 2
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

I was diagnosed with DCIS, Grade 2 the end of September.  I had a lumpectomy the end of October.  I will most likely be starting radiation the second week of December.

I currently have an appointment set up for next week to get tested for the BRCA 1 and 2 genes.  The genetic counselor recommended I get the test because of my age (34).  I have friends that agree with my decision to get the test.  For me, I just want to know.  But there are others in my life who wonder why I am getting tested. 

Any advice? 

Should I be concerned about the results in my permanent file?  Has this impacted anybody's job prospects? Insurance coverage etc.?

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  • Ozzi
    Ozzi Member Posts: 80
    edited November 2009

    I was tested in 2000 - test was ambiquous with a variant of the BRCA1 mutation - I have never had any problem with insurance, job etc.  The results prompted me to have my ovaries removed in addition to the surgery and chemo I had already had (I was 42 and done having children).  Do you have a strong family history?  Age alone wouldn'tnecessarily prompt testing.  Your key words are - "I just want to know".  What makes you comfortable is what is important.  No what others think.  Get the test, gather as much information as possible - that is what will work for you.

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  • sunnyhou
    sunnyhou Member Posts: 169
    edited November 2009

    I am 38 and my mom, paternal grandma and aunt all had BC but in their sixties. I had genetic counseling and it was estimated my risk was 5-7% of having the gene. I checked my insurance and they do not cover it so I will not do it since the cost is very high. However, if my insurance covered it, I would def do it. I think that if I had a positive gene test then I would want my ovaries removed. .. I am still thinking of removing them since I am done having kids but worry about the side effects..

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  • BZW
    BZW Member Posts: 2
    edited November 2009

    The only history in my family is my maternal grandmother.  She was diagnosed with breast cancer at 60.

    And I didn't think age alone would make the genetic counselor suggest I get the test.  Which is why I was so surprised when she suggested it and perhaps that is why I wonder if I should really be doing it.

    I am lucky though, my insurance does cover it... 

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  • Jules824
    Jules824 Member Posts: 85
    edited November 2009

    Id get it done if you can. They want my daughter to have it since I have bc, but her insurance wont pay. Shes only 28, but Im concerned for later on. Otherwise no one ever suggested I get the test even though there are 3 immediate family members who has breast cancer too. Best of Luck....Jules..

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  • sweatyspice
    sweatyspice Member Posts: 922
    edited November 2009

    I had it b/c I wanted to know.  My maternal grandmother was also the only one in my family, I'm not really sure when she was diagnosed, I was very young.  I'm guessing she was postmenopausal, but who knows.

    My insurance company didn't want to pay at first, they had the Dr. send in a statement of medical necessity, which she did, and the ins co paid.

    The consent form has a box (which I think you check off) stipulating that if you'll have a copayment larger than $375, they won't do the test.  So that's an option, they just won't run the test it if they can't get it past the ins co.

    What I didn't realize at the time was that the test was more imprtant as an indicator of ovarian cancer than it was for breast cancer in the other breast.  I was trying to figure out whether to have a bilateral mastectomy, not whether to have my ovaries out.  I was freaked out when I heard about the ovarian stuff, I just wasn't expecting that.

    Luckily, I was negative, so my ovaries get to remain surgically undisturbed for now.  But my gyn is talking about doing it anyway.....for other reasons.  *sigh*

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  • shelleydodt
    shelleydodt Member Posts: 78
    edited November 2009

    Get the test, especially if your insurance will pay for it. It costs $3,200 but you will feel better for knowing. If you are neg, fine but if you are positive, then you can develop a plan of action. Why worry-just take positive action for treatment and prevention of further disease if you need it. Only 1 in 500 women tests positive so chances are likely that you are not. I wasn't.

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