21 years old...High Risk and Paranoid!

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jnboss17
jnboss17 Member Posts: 1
edited June 2014 in High Risk for Breast Cancer

Hello everyone,

My mother was diagnosed with stage 4 breast cancer that spread to the bone, brain, and liver.  She was 42 years old when she was diagnosed.  She passed away when she was 45 and we were unable to get her tested for the BRCA genes.  About a year ago, my mother's sister (my aunt) was diagnosed with stage 2 breast cancer that had gone into some of the lymph nodes.  She is NEGATIVE for the BRCA gene mutation.

I am so paranoid about getting breast cancer.  I self-examine myself every day and i'm just waiting for the day when I myself am diagnosed with breast cancer.

I know I need to get tested for the gene, but I am so scared to get the results.  If I am positive, then I will consider the preventative mastectomy with reconstruction (although I know that isn't a garuntee of not getting breast cancer).  I hate the thought of going through such a major surgery only to get breast cancer anyways.  Part of me thinks maybe I shouldn't get tested because I would rather not know.

Does anyone know if the VA will test for this gene mutation?  I don't have 'health insurance' per se, but I am a veteran and I can get care through the VA.  

Also, is anyone experienced with alternative medicine in terms of treating cancer?  After seeing what my mom and aunt have gone through with chemo and radiation, I'm leaning more towards other options for treatment if/when I get breast cancer.

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  • Mom26kids
    Mom26kids Member Posts: 2
    edited August 2012

    Hello, I am a breast cancer survivor and I am also BRCA1 positive.  I don't know if the VA covers the cost of the test, but I know that your test will be about 10% of the cost of your aunt's.  At least that is the way it is in Oklahoma.  I was tested and it cost about $3500 (I was told that most insurances cover the amount unless they exclude all genetic testing).  My Mom (she has had breast cancer twice) and my sister, even a cousin was tested for about $350.  It was explained to me that when I was tested they checked a lot of markers and when my family was tested they only have to test the ones I was positive for.  That is why it is cheaper.  I don't know if that would work for you since your aunt was negative?  But I would sure contact the VA to find out if it is covered.  I have a 22 year old daughter that has been tested and she is positive.  We looked at it as a postive thing because she knows she had to be very diligent about self exams.  She will start mammograms when she turns 25.  

     I hope this helps

    Angi 

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  • Beesie
    Beesie Member Posts: 12,240
    edited August 2012

    Angi, unfortunately I believe the reduced cost for the BRCA test only applies if you are being tested after someone else in your family tested positive.  jnboss17's aunt tested negative, and her mother was never tested, so in her case they would have to run the complete test.  

    jnboss17, I don't know if the VA will cover the cost.  I know that there have been other vets through here... they might know but if they don't hang out in this forum and happen to read your post, they would never see your question.  You might want to post the question again in a new thread, with a title something like "Will VA cover cost of BRCA test?"  Thread titles show up on the discussion board home page as the "last post" and also on the "active posts" list so you are morely likely to catch the attention of another vet if your thread has that title.  Then you might find someone who knows the answer. 

    Keep in mind that even if your mother was BRCA positive, there is still only a 50% chance that you are.  This is a gene that we inherit either from our mother or from our father.  It could be that you inherited the gene from father, in which case your risk level would be the same an any average woman (unless of course there is a lot of breast cancer on your father's side of the family as well).  The problem in your case is that your mother wasn't tested, so there is no way to know if she was BRCA positive, or if her BC might be connected to another genetic mutation (possibly one that hasn't even been discovered yet) or whether her diagnosis was totally random (as most cases of BC are).

    Have you seen a genetic counsellor?  That would be a good first step because the counsellor would look at the health history on both sides of your family and would be able to talk about your risks and what you can do from a risk reduction and screening standpoint.  You wouldn't have to commit to doing the BRCA test but if you wanted to do it, the counsellor could take the blood draw.

    Good luck finding your answers! 

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  • Zeeba
    Zeeba Member Posts: 145
    edited August 2012

    I just tested positive for BRCA2 (my mother had BC and died very young) and although I was terrified to take the test (and waited til I was 44), I am convinced it will save my life.  Definately talk to a genetic counselor (they also explain life style changes, actual risk and stuff that made it less scary for me) and may help you navigate insurance. Also have a look at the FORCE (facing our risk empowered) website--lots of good info there and you may find the answer about the VA.

    Best of luck! 

    Laurie

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