Tested Positive for BRCA2 now what?

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DK1
DK1 Member Posts: 3
edited January 2016 in Genetic Testing

Today my soul was crushed a little bit when I was called into my doctors office. I was told I tested positive for the BRCA2 gene mutation. I am a 4th year PhD student and am 28 years old, I felt life me whole like was just starting, and although I realize having this gene is not a death sentence, I feel pretty awful. I was reading about possible clinical trials to reduce your risk, I looked into other possibilities (mastectomy and ovary removal is not an option for me right now). Do any of you have any suggestions for clinical trials?

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  • BayouBabe
    BayouBabe Member Posts: 2,221
    edited October 2015

    DK1 - I have no info on clinical trials, but if you have not already done so, be sure to check out the FORCE website, www.facingourrisk.org, Facing Our Risk Of Cancer Empowered. You will find lots of info there on BRCA.

  • inks
    inks Member Posts: 746
    edited October 2015

    You can go to clinical trials.gov and punch in BRCA2 to see all the clinical trials. https://clinicaltrials.gov/ct2/results?term=brca2&pg=1 . The genetic counselor could help you too. Did you see him or her after getting your positive result. Your insurance will pay for the appointment so you might as well take full advantage of it.

    Pennsylvania University has Basser Center for BRCA - as far as I know they have the most interesting studies.

  • inks
    inks Member Posts: 746
    edited October 2015

    I forgot the link Basser

  • DK1
    DK1 Member Posts: 3
    edited October 2015

    Thank you so much!

  • DK1
    DK1 Member Posts: 3
    edited October 2015

    Thank you very much!

  • Mominator
    Mominator Member Posts: 1,575
    edited December 2015

    DK1: I'm so sorry that you are BRCA positive. I understand all too well that soul-crushing feeling. It was bad enough when I received my positive results and what that meant for me. And then my soul was crushed again when I realized what that means for my two teenage daughters and my son.

    I'm only just seeing your thread now as I have been going through my own BRCA treatments.

    Being positive for a genetic mutation is not a death sentence but an opportunity.

    Now that you know, ask for treatment recommendations. Clinical trials aren't your only option. There are treatments available to you right now.

    You have options: increased surveillance, chemo-prevention, and surgery (obviously after you finish your child-bearing years). Increased surveillance may mean alternating mammograms and MRIs, with back up ultrasounds and biopsy as needed.

    I have had friends who have gotten breast cancer seemingly out of the blue. They didn't find their cancer until it was already stage III. You can be pro-active and beat cancer before it has a chance.

    Wishing you all the best in your journey

    Mominator

    BRCA2+, wife, mom to 3 children of various special needs, musician, volunteer, 54 yrs young

  • swanseagirl
    swanseagirl Member Posts: 393
    edited January 2016

    Hi all

    Not sure I'm on the right board but need a few shoulders.

    I am testing for the brca gene this Monday. I was advised to get it done 2 years ago. With a few personal situations I just let it go.

    Went in for my 6 month appt and oncologist advised I get tested.

    Spoke with the genetic councelor who also advice I was high risk, which I know, thyroid cane at 36 and bc at 41.

    I'm beyond scared. I've spent the ladt few days basically preparing for a death sentence.

    I have 2 children 24 and 21 and if I was honest I didn't do the test before now because I really am scared if I test positive I would have passed it on to them.

    I've always been proactive but right now I want to put my head in the sand.

    Any words of advice.


  • LisaAlissa
    LisaAlissa Member Posts: 1,092
    edited January 2016

    Hi swanseagirl!

    Knowledge is power! (Not knowing doesn't change the risk...testing just gives you access to tools to address the risk!)

    Your genes are what they are from the time you were formed in your mother's womb. Taking a test to identify whether some of them contain specific risks changes nothing. And finding out if you have some particular risks (based on your genes) simply gives you the chance to address those risks face on. Finding out if you have those risks doesn't represent a death sentence!

    And just think, if you're negative, so are your children. If you're positive, your children have the chance to be tested for whatever you were positive for, and then plan their own families around any positive results they have.

    You should think of getting tested as a gift to your children.

    HTH,

    LisaAlissa

  • swanseagirl
    swanseagirl Member Posts: 393
    edited January 2016

    That helped a lot Lisa Alissa. Thanks!

    Hope for the best, prepare for the worst.

    Hugs xx


  • swanseagirl
    swanseagirl Member Posts: 393
    edited January 2016

    That helped a lot Lisa Alissa. Thanks!

    Hope for the best, prepare for the worst.

    Hugs xx


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