Breast cancer cluster

Options
Minet
Minet Member Posts: 5
edited September 2012 in General discussion

I have several relatives with breast cancer. Sister 1 (40yo), sister 2 (53yo), sister 3 (56yo), Paternal cousin (60yo), partneral aunts x 2 - all diagnosed with BC and of which three have died. The family has been tested for BRAC1 and BRAC2, with a negative result. So, plenty of BC in the family and no idea why. Now at the age of 53 I have decided to have a bilateral mastectomy and reconstruction.

Is there anyone out there with a family BC cluster and negative results to genetic testing ?

Comments

  • Thea
    Thea Member Posts: 54
    edited March 2015
    Options

    Hi Minet,

    I just wanted to jump in and say Welcome to the online network. You seem to be finding your way around but just shout if you need some help.


    It sounds like you've made a really tough decision based on your family's history of breast cancer. I'm sure there will be some women on here that have been through a similar situation and can share some of their experiences with you.

    If you would like any further information on family history, BCNA does have a Family History fact sheet.

    Cheers,
    Thea

  • Minet
    Minet Member Posts: 5
    edited March 2015
    Options

    Thanks Thea. Yes, I hope there is some one or more with a similar situation to deal with. I have searched high and low around the internet, and read a variety of publicatoins from Australia, UK and USA. But, not one as yet provides support/advice for someone in my situtation. All, based on my research, deal with people who have tested positive to BRCA1 and/or BRCA2.

  • Thea
    Thea Member Posts: 54
    edited March 2015
    Options

    Minet, I'm sorry to hear that you're finding it so tough to find information for women in your situation. I'm not sure if you've already come across it, but Pink Hope is another site that you may find really beneficial - they provide information and support for high-risk women - regardless of whether they're BRCA1 or BRCA2 positive. I hope this helps.

    Best of luck, Thea

  • Minet
    Minet Member Posts: 5
    edited March 2015
    Options

    Michelle, just wish there was more information out there about our situtation. And more chatter about it. Feels very lonely right now. I have tried to register with kConFab, an Australian research group, as I am very keen to see what they can learn from my family's cluster so that others down the track can benefit from that information. Clearly it won't help my family now, but it might help someone else sometime later (or hopefully sooner).

     

  • CarmelS
    CarmelS Member Posts: 268 ✭
    edited March 2015
    Options

    Minet somehow I missed this post until now. Our family is similar. We started about 30 years ago with a paternal Aunt, & since then there has been two of her cousins, in 2006 my sister, & in 2011 there was me. My sister had the genetic testing & it came back negative. I was asked to come to a "genetic counselling appt"  &  I asked why I was there because I already knew we were negative, I was told they wanted to keep gathering information on our family because of the high rate of breast cancer (& a couple of other cancers). When I got the " feedback" letter afterwards they said they would just keep it all on file & if there was a new test that comes up to test for a different bc gene they would be back in touch. Thankfully we are all still here, the first three are now in their sixties & seventies, my sister is getting on with her life & has just finished 5 years of tamoxifen, I am about to start Femara, & trying to get things happening in my life.

    Only you can decide whats best for you. Best of luck.

    Carmel

  • Minet
    Minet Member Posts: 5
    edited March 2015
    Options

    Carmel, thanks and I agree. The decision is mine.

    I am so pleased there is someone else in a similar situation to mine. I have regsitered with a few research groups in the hope that our family history, etc, will help them to buiid a knowledge base from which to help others like us.  Unfortunately, it is unlikely they can do anything in the foreseeable future.

    If you have time, could you tell me why you chose taking Femara instead of having a prophylactic mastectomy?

  • Minet
    Minet Member Posts: 5
    edited March 2015
    Options

    Carmel. Again, thank you.

    No, I haven't been diagnosed with cancer, nor are the family BRCA positive. 

    Yes, the thinking process is rational and very heavily researched. I have read books, technical papers, online blogs and met with two different geneticists. I then 'interviewed' two breast surgeons to seek their opinions and botth have said the same thing. So come November 3rd I will have the double done and then stop looking backwards waiting for the Breast Cancer train to run me down.

    My best wishes for your journey. I hope ithe drug is successful and you have plenty of friends to keep you laughing.

Categories