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daughterofsurvivors
daughterofsurvivors Member Posts: 21
edited June 2014 in High Risk for Breast Cancer
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  • daughterofsurvivors
    daughterofsurvivors Member Posts: 21
    edited June 2008

    I am too afraid my insurance will drop me to get genetic testing but my mom and her mom both had breast cancer at a very young age.  I am trying to find out what my options are, is a mastectomy the best option?  is there anything else?  Help!

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  • lvtwoqlt
    lvtwoqlt Member Posts: 6,162
    edited June 2008

    There has been some recent developments in the government that I think prevent genetic discrimination by insurance companies. I can't find it right now but it has been in the past 2 months.

    Hope that this helps direct you in the right direction to get a complete answer.

    Sheila

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  • lvtwoqlt
    lvtwoqlt Member Posts: 6,162
    edited June 2008

    I just found this post by Tender from May 23 about the genetic bill.

    Just yesterday, President Bush signed the much needed Genetic Insurance Limitation Act, a law designed to limit discrimination of patients with positive genetic findings. This should reassure women and men alike that doing the right thing, especially for our children, won't hit us up on the side of the head by eliminating our insurance rights.

    Sheila

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

    To get the very latest info, see a genetics counselor. They normally require counseling BEFORE testing.



    You may also want to check out the website http://www.facingourrisk.org/



    According to this article, there may still be some loopholes.

    http://www.newscientist.com/channel/being-human/dn13785 -us-outlaws-genetic-discrimination-.html





    I read a post about a year ago (BEFORE the bill this spring was passed), that the military is excluded. In other words, if you have or are considering a career in the military, you may want to inquire first.





    In 2006 (eons ago), I heard from one genetics counselor (NOT MY genetics counselor) what some people do is to pay for the test out of pocket (which may be VERY expensive). If the results come back negative, they bill the insurance company.



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  • daughterofsurvivors
    daughterofsurvivors Member Posts: 21
    edited June 2008

    Thanks, i had heard about the bill but my doctor said that until it is out for a while it is hard to say what it will really do. 

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

    Here's an article on GINA:

    http://hr.blr.com/news.aspx?id=78371

    Unfortunately, according to the article, we still have to wait for its protection: 

    "The law's provisions for insurers take effect in June 2009 and for employers in November 2009."

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  • daughterofsurvivors
    daughterofsurvivors Member Posts: 21
    edited June 2008

    That sounds good, but may not be helpful now.  I am not sure i really want to know if i carry the gene anyway.  I know my risk is super high anyway and that would just be depressing to find out i have the gene too.  But that doesn't help me make the decision on whether i want to have a prophylactic mastectomy or not.  My doctor said that i should think about it and it may be the best option for me.  it is scary.  From what i have read it would be best to have a total mastectomy removing nipples and everything, i don't like the idea of that but why do something half way and not reduce my risk as much as possible right. 

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  • veggievet
    veggievet Member Posts: 72
    edited June 2008

    Dear Daughter,

    Please e-mail me at: suefriedman@facingourrisk.org and I would be happy to connect you with other women making these decisions.  Some women do decide on prophylactic surgery without genetic testing but it is important to at least get input from a genetics expert (ie-not just a breast surgeon--most are not experts in genetics).  As far as the issue of sparing vs. removing the nipple, it is also a personal choice.  There is emerging research that suggests that under certain circumstances keeping the nipple might be safe.  Other surgeons suggest saving the areola and removing the nipple.  There are many options out there.  I would be happy to direct you to resources on prophylactic mastectomy and also help you find a genetics expert in your area. 

    Hugs and love,

    Sue

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  • daughterofsurvivors
    daughterofsurvivors Member Posts: 21
    edited June 2008

    Thank you.

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