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daughterofsurvivors
daughterofsurvivors Member Posts: 21
edited June 2014 in High Risk for Breast Cancer

Has anyone delt with a genetic test and resulting prophelactic, i am considering and wonder what my insurance will say.  Any advice or experience would be helpful, thanks.

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  • leaf
    leaf Member Posts: 8,188
    edited September 2008

    I have heard that genetic testing coverage varies from company to company.  

    The FORCE people have indicated that if you indeed are BRCA1 and/or 2 positive for a mutation known to produce a higher risk of breast cancer, they have not had a company *eventually* pay for a requested prophylactic mastectomy. They may need some encouragement, but the cost of having a prophylactic mastectomy is less than the cost of  chemotherapy + a mastectomy.  http://www.facingourrisk.org

    (The usual touted risk of a BRCA positive woman is about 45-90% lifetime risk.) 

    In my particular case, I was referred for genetic counseling.  I found at that counseling meeting that my risk for BRCA was low.  I was informed by my insurance company that if genetic testing was 'medically necessary' they would cover it.  The genetic counselor said it was not medically necessary, but I could have it done if I paid for it out of pocket.

    My insurance company paid for most of my 45 minutes of insurance counseling.  This is generally required before genetic testing.

    I have LCIS, ALH, and a low risk for single inherited genetic mutations that produce breast cancer. 

    I do not know if my insurance company would cover prophylactic mastectomies for me. 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2008

    I am high risk from the combination of LCIS and family history (mom had ILC) and recently found out my insurance co. will not pay for genetic testing. There reasoning was that I dont "fit the criteria set up by the ACS"--which is an extensive list--lots of issues that I'm glad I don't have like history of ovarian ca, male bc, multiple relatives with ovca or bc, etc....  but gentic testing would still be beneficial in someone in my situation. So I'm left with the decision to pay for it myself at some point.

    Anne

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  • leaf
    leaf Member Posts: 8,188
    edited September 2008

    Here's the ACS guidelines, which follow the USPSTF guidelines.

    The US Preventive Services Task Force (USPSTF) recommends that only women with a strong family history be evaluated for genetic testing for BRCA mutations. This group represents only about 2% of adult women in the United States.The USPSTF recommends that women who are not of Ashkenazi (Eastern European) Jewish heritage should be referred for genetic evaluation if they have any of the following:two first-degree relatives (mother, sisters, daughters) with breast cancer, one of whom was diagnosed when they were younger than 50three or more first- or second-degree relatives (includes grandmothers, aunts, cousins) diagnosed with breast cancerboth breast and ovarian cancer among first- and second-degree relativesa first-degree relative diagnosed with cancer in both breaststwo or more first- or second-degree relatives diagnosed with ovarian cancera male relative with breast cancerWomen of Ashkenazi (Eastern European) Jewish heritage should be referred for genetic evaluation if they have:a first-degree relative with breast or ovarian cancertwo second-degree relatives on the same side of the family with breast or ovarian cancer http://www.cancer.org/docroot/CRI/content/CRI_2_4_2X_Can_breast_cancer_be_prevented_5.asp 
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  • 1Cathi
    1Cathi Member Posts: 1,957
    edited September 2008

    My insurance paid 100% for BRAC test (I also saw a counsler) I have BCBS, and they are also paying for my bilat on 10/17 (no questions asked) I tested negative for BRAC,  and no family history of BC before me (however the counseler did notate on the request that my mom passed away from liver cancer unknown primary)  and she felt I would not be refused because of DX before age 50.  This question has popped up alot on other threads and it seems as though the insurance company with the least refusals is BCBS.

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  • daughterofsurvivors
    daughterofsurvivors Member Posts: 21
    edited September 2008

    Thanks for all the quick replies.  looking online at my insurance company's policy shows that they will cover if it is medically necessary acording to the ACS standards.  I fit pretty well both my mother and her mother had BC before age 50.  So i don't think i will be denied.  So i am 26 and i am scared to have it doen now and i am scared to wait to have it done.  I know i want it done, but when is a good time right :) 

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  • 1Cathi
    1Cathi Member Posts: 1,957
    edited September 2008

    There will proably never be a perfect time, but I think knowing enables you to make more informed decisions and gives you time to do so.

    I had my test  2years after DX and I was negative for both??????? The teat is a starting point I think, but remember Cancer really doesn't follow rule. 

    I will never know if my mom had breast cancer before her liver cancer was detected, she refused any treatments as when she was told she was already very ill from diabetes and kidney failure w/dialis (sp) - she was vey end stage and lived just 2 months, so on paper I am the first in my family.

    Also just as an FYI  -my genetic counselor told me once the test was submitted if insurance refused to pay I would be notified before it was run or if I was even to have a copay.  As I said BCBS paid 100%.  And minus my o-apy they are covering my surgery on 10/17.

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  • daughterofsurvivors
    daughterofsurvivors Member Posts: 21
    edited September 2008

    What about the genetic cousnseling, did they cover that? 

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