Relatives response to BRCA+???

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BayouBabe
BayouBabe Member Posts: 2,221
edited June 2014 in Genetic Testing

Just wondering how other people's relatives have responded to being BRCA+. One cousin left a note in my mailbox asking me to sign a medical release for her testing. Note with it said she was just too busy to stop and see me so she had her husband put it in my box on the way to work. Ugh, I was furious and let it set on my counter for two weeks. Finally sent it in as I wouldn't wish cancer on my worst enemy. Got an email a few weeks later saying she tested negative and how absolutely wonderful that was. No thank you, no sorry yours couldn't have been the same. Just wasn't this absolutely wonderful for her. I did not respond.



Other two cousins I notified by email ( this is the only way we have contact) simply have not responded at all. It is like I have fallen off of the face of the earth. One cousin should especially be concerned, as her mother (not my blood relative) also had breast cancer.



Vent over. Thank you for reading. But, curious about the responses you got.

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  • BayouBabe
    BayouBabe Member Posts: 2,221
    edited July 2013

    Bump

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  • jessica749
    jessica749 Member Posts: 429
    edited July 2013

    We've had experience with another genetic  cancer related thing in my family, not BRCA. So I speak from my family's experience with that.  But I understand your frustration.  And a friend with BRCA + advanced ovarian has tried with no success to get her cousins to test.  You know the old saying, 'you can lead a horse to water but you can't make it drink."

    You have done your part by informing. You really can't control other people or make decisions for them as you know. It's frustrating, but there it is.  

    In our family we too had someone thrilled that they were genetically unaffected, meanwhile, others were  and the non-affected member's joy seemed to be shared without any concern for those affected. So I'm sorry that your one cousin was so insensitive, too. It's hurtful. I can't explain these people.  But you can take the high road  and tell her how happy you are for her.  Or not! Whatever you feel like....

    Re the cousins you notified by email: perhaps they were shocked by this news and didn't know how to respond? I don't know how your email read.   Maybe you should email again to inquire if there's any info they need from you (such as copy of BRCA pos test so that they can take it to genetic counselor and get this covered?), how you'd be glad to send it on, and some info about the steps they may take (how to find genetic counselor).

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  • Alikat123
    Alikat123 Member Posts: 51
    edited July 2013

    Bayoubabe,

    I feel so bad for you, but at least you tried and you let them know.

    I wish I had some answers for you!  As you know in my situation, that I am adopted so after I found out about being BRCA2+ AND I also found out that I have the most common Ashkanashi Jewish mutations  for BRCA2 -6174delT Which I would have NEVER guessed as I was put up for adoption through Catholic Charities, raised, Irish Catholic, and I did know that my bio mom came from a very large Irish catholic family- so it must of been bio dad- LOL  My point is I also have many other adopted relatives, and I suggested to them that they too may want to persue BRCA testing. Good luck with this.

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  • BayouBabe
    BayouBabe Member Posts: 2,221
    edited July 2013

    Jessica749 - I sent an excellent email to them. Contained all pertinent information, including my willingness to sign a medical release for them, information on where I was tested, information on BRCA in general, and a strong encouragement to call me with questions, more information, anything. Bah, humbug! Not much more I can do for them. If they feel the need to "shoot the messenger" it is at their own health risk, I guess. I did the right thing.



    Alikat123 - my sister is adopted. She is still considering being tested further to discover some of her own unknown medical history.



    Thank you both for responding. I guess I was just discouraged, as cancer is such a lonely journey to begin with, and then to not even get a response back, or a drive by in my mailbox, was disheartening. Glad my husband, sister, and two preteens have been so supportive. Rest of family has been a joke.

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  • TXBadboob
    TXBadboob Member Posts: 597
    edited July 2013

    Hi Bayoubabe,

      I also have had a problem getting my relatives to get tested.  One cousin(who works as IT at MD Anderson Cancer Center) has been tested and is neg.  She has been helping me try to get our other family to get tested.  Another 1st cousin just called me Fri night to let me know she tested pos.  She's very upset and confused, as her mother has not had any problems, although Her mother(my pat. grandmother) had breast cancer.

    I have a son, and half sister on Dad's side, and I'm having the hardest time getting them to get tested.  I have guilted my brother to get tested, for his daughters' sakes, but it hasn't happened yet.  If anyone has any advice, it would be appreciated.

      I'm very pleased to say all of my family have been very supportive to me.  Some just don't believe it could happen to them.

    Thanks for posting,

    Deen

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  • BayouBabe
    BayouBabe Member Posts: 2,221
    edited July 2013

    Family is so frustrating at times. Thing is, I really don't even care if they do the testing. It would be just nice to get an acknowledgement from them that they even received the information, regardless of what they choose to do with it. My husband said to "just let it go, at least you did the right thing and shared the info with them." Can I choose new relatives? :)

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  • BayouBabe
    BayouBabe Member Posts: 2,221
    edited August 2013

    Sad news today - the one relative I mentioned at the start of this post - the one that never responded to my information about being BRCA +, well, I just got news this morning that she was diagnosed this week with stage IV ovarian cancer. I keep telling myself, that even if she would have heeded my news, it would not have changed her stage IV at this point in time. She is only 37, no kids.



    I feel, with this news, that I dodged a bullet. Yes, I may have had breast cancer, but I am managing treatment and have a good prognosis. I looked at my kids today and think they saved my life - two pregnancies, breast feeding, maybe it kept my possible ovarian cancer at bay.



    I hate cancer. I hate BRCA. I feel so sad for my cousin. This is a hard day. :(

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  • resa325
    resa325 Member Posts: 1
    edited August 2013

    BayouBabe that is sad about your cousin.

    I got mixed responses and weird responses from my family. The ones who were tested and came back negative were so overwhelmed with relief/guilt, they aren't having anything to do with me any more; (telling other family members they can't face me). The ones who refuse to be tested have a weird attitude about my plans for PBM; (why remove healthy tissue if there is nothing wrong with it)

    Honestly I ((sometimes)) wish that I hadn't told anyone because of their response, but I know in my heart family really needs to know what they might be up against.

    My in laws response was unique as well. My father in law had every person he knew calling me to tell me their horror story about surgery. My sister in law said I was too "happy" about finding out I was Brca-1 positive because I had an up beat attitude of being thankful to know my status and proactive in my treatment plan.

    October I will go in for an MRI and mammogram and plan for my PBM in January. I told my husband I didn't want anyone to know anything because I want to focus on healing and not listening to their unsolicited opinions. I would be different if every ones attitude would be "can I bring you a casserole" instead of "hope you don't get an infection or bet that's gonna leave an ugly scar"

    Family/people drive us crazy!

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  • sabihah
    sabihah Member Posts: 65
    edited September 2013

    I can see why the men in the family might not want to be tested.  Their own risk of cancer from a BRCA mutation is relatively low (although still elevated).  By getting tested, you run the risk that you could be denied life insurance or long term disability insurance later.  There is a trade off.

    In my own family, my Mom tested positive for BRCA 1 after her BC diagnosis.  Her Mom, my Grandma, survived BC as well.  I'm getting tested because I feel the need to know and DO something about it if I am positive, and to sleep at night again if I am negative.  For me, knowing for sure is worth the risk of not being about to go out and get my own life insurance later.  (I currently have life insurance through my job and my husband's job anyway, and they don't ask.)

    My brother is not planning to get tested until his children are adults, so they can make their own decision about getting tested at that time.  He's more worried about the possible discrimination than he is about his own cancer risk.  Again, trade offs.  I don't think he's being unreasonable.

    I'm not sure what my Mom's sisters plan to do.  I know they are very upset about everything.  We hate to watch my sweet Mom go through her cancer treatment, and then you just add this on top of it - now we know it IS hereditary, and our entire family WILL be dealing with this somehow.

    On the other hand, it is empowering to know which gene mutation is causing the problems.  If they didn't find the gene in the test, it could have just been one of the ones that haven't been identified yet.  Now we each only need to test for one gene mutation, and see if our personal risk is very high, or pretty much normal.

    I know I'll be so relived if I don't have the gene mutation (50/50 shot, right)?  So what IS the sensitive way to talk about that?

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