My Brother FINALLY got the BRCA Test ... and His Results ...

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CalGal
CalGal Member Posts: 469
edited June 2014 in High Risk for Breast Cancer
My Brother FINALLY got the BRCA Test ... and His Results ...
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  • CalGal
    CalGal Member Posts: 469
    edited June 2008

    Hello Everyone -

    I don't usually post in this section ...  but I wanted to share this with those of you who feel you're at high risk or are considering the BRCA test.

    There is a strong family history of bc. My maternal grandma, my mom and me - all dx'd pre-menopausal. Despite having "early stage bc with clear nodes" a little over a year later, I was dealing with recurr bc and mets.

    When dx'd, my mother already had lymph node involvement ... and she lived another 13 yrs to age 59, the last two with the same mets I have.  However, my grandma died two years ago at age 93, unrelated to bc. 

    I always figured that genetics were involved ... and thought that starting mamm's at age 25 and monthly checks would be enough. It wasn't.

    I didn't find out all the BRCA implications until AFTER I was dx'd a 2nd time with recurr bc and mets. At that point, it was almost a relief, in that it explained things ... I can't turn back the clock, but if I could ... I would have found out all I could about BRCA, since in terms of bc, I believe it's best to be very informed ... and make sure that the doctors are too.  Ever since my mets dx, I've become and stay extremely informed on the particulars of my bc and mets, which has served me well ...

    I got my BRCA1 (5385insC) results in March 2006. Around that time, I broached the BRCA topic several times with my brother .... but he was absolutely not interested ... Not only did he not want to be tested, he didn't even want to hear about the risks. He has a boy and a girl, now 9 and 7.

    More recently, I asked him if he was worried about carrying the BRCA1 mutation. He said he was very worried. I said, well, if you're worried now ... there is a chance you can alleviate that worry ... If you test negative, our strain of BRCA1 ends with me. If you're positive, then your children still have a 50% chance of not having the mutation. Hopefully, by the time they are adults, there will be significant medical discoveries that will eliminate the risk.

    Surprisingly, he immediately agreed! Although I forwarded my results initially, he couldn't find them, so I re-sent them to him to forward to the genetic counselor. His results, due to only checking for my mutation came back in less than 2 weeks!

    Today, my brother called and said he is NEGATIVE for BRCA1!!! Hooray! I will be the last in my family with BRCA1 bc!

    CalGal 

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  • LisaSDCA
    LisaSDCA Member Posts: 2,230
    edited June 2008

    Oh, CalGal - your post brought tears to my eyes!

    I am SO happy for you! I can imagine your sense of incredible relief, knowing that this mutation ends with you. That is my prayer also.

    If my daughter were to test negative - and there is a 50% chance that she will - our family mutation ends with me also. My elder sister died young, childless. My brother is childless by choice, my younger sister is negative. If only my baby is negative, then all of my grandbabies, their grandbabies - all safe. Now to convince her to test - any suggestions on getting a 23 yr. old to agree to it are welcomed!

    Congratulations to you on your wonderful news!

    Lisa

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  • pip57
    pip57 Member Posts: 12,401
    edited June 2008

    I know how you feel. I got my results for the p53 gene yesterday. They were negative. I was quite surprised given our family history. However, I was sooooo relieved for my two boys. I know that losing a sister so young to cancer has got to weigh heavily on them.

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  • Beesie
    Beesie Member Posts: 12,240
    edited June 2008

    CalGal and PIP, that's great news from you both! 

    So many people are afraid getting tested, but I believe that knowledge is power.  Finding out that you are negative is soooo much better than worrying endlessly that you might be positive.  And for those who do get positive results, at least they know and they can choose to take whatever actions they feel are necessary.

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  • wishiwere
    wishiwere Member Posts: 3,793
    edited June 2008

    Isn't there a chance though, that even if you test NEG, that there are other mutations that have not been recognized yet, that are possible?  It was just something I read about the gene testing and neg results and how it can give a false sense of security to families?

    Sorry to be the downer, but just wanted to share that. I've still not down testing, b/c I'm one of those that's afraid of the ramifications of insurance, employers and so on. I know the law says they can't, but there is no way to prove why you weren't hired for a job when they can get your medical records so easily :(

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  • Beesie
    Beesie Member Posts: 12,240
    edited June 2008

    wishiwere, yes, that is possible.  After my test came back negative, the genetic counsellor told me that if I hear about the discovery of new variants of the BRCA gene, I can always come back to be tested again.  Additionally, the BRCA gene isn't the only genetic disorder that's related to breast cancer - there are others already discovered although they are either extremely rare and/or they don't increase risk by much.  In all likelihood, there will be more in the future.  But still, I think you have to take the good news where you can get it.  And for those who know that a specific BRCA mutation is in their family, any family members who test negative for that specific mutation are pretty much in the clear. 

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  • pip57
    pip57 Member Posts: 12,401
    edited June 2008

    Yes. My counsellor told me that they have only discovered a few gene mutations such as the BRCA and p53. She believes that there are dozens more that will be discovered over the next few years. The research in this area has really opened up recently. They hope that they will eventually be able to design your treatment related to the gene that is involved.



    I realize that my sons are not immune to getting cancer just because of this negative test result. However, if the p53 gene is mutated it leads to very aggressive and rare cancers. It would also mean that my chances of recurring would be pretty much guaranteed. So that was good news for us.

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