BRCA2

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jamieh312
jamieh312 Member Posts: 3
edited October 2015 in Genetic Testing

hi all I am 30 years old and have been debating for around 10 years to be tested and finally have been. Got my result yesterday and it's positive. I am not sure what to do and am worried I have passed this to my children xx

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  • Moderators
    Moderators Member Posts: 25,912
    edited September 2015

    Hi Jamie! Welcome to Breastcancer.org! You've found a wonderful place for information and support here.

    Until other members come along with responses we suggest you to take a look at ths article, it may help:

    What to Do if Your Genetic Test Results Are Positive

    Best,
    The Mods
  • Curlyq1974
    Curlyq1974 Member Posts: 144
    edited September 2015

    Ugh!!!  So sorry Jamieh312.  The blessing is now you know.  Knowledge is power.  I didn't know I was positive until I had a lump that turned out to be cancer.  I was the first in my family to test, and since my mom, aunt and brother are also positive.  My uncle is negative!!!  You cannot help what you pass to your children.  Just like you cannot help if they have blue eyes or brown eyes... it is what it is...  AND... I know of a woman whose Mom is positive.  She and her sister both tested NEGATIVE!!  50/50 chance. 

    As for what to do... 1. Breathe... you will get thru this.  2.  Talk to a genetic counselor.  Get as much information as you can about the possibilities.  3.  Get a breast MRI and a pelvic ultrasound.  This will establish your baseline for future scans.  4.  Get a good bottle of wine and drink it!!  It is a roller coaster ride of ups and downs. 

    My Mom and Aunt have no cancer to speak of.  Both had hysterectomies years ago.  But when they found out they had the mutation, they both opted for prophylactic mastectomies.  My mom reconstructed, my aunt did not.  My brother is in a different boat.  We don't have much cancer in the family so he is just kind of watching. 

    And another positive thought for the kiddos, Cleveland Clinic is testing a vaccination for BC.  My hope is that one day, women with the mutation can get their BC shot with their flu shot!  You just never know what the future holds.  20 years ago there was no genetic testing...  research is truly amazing!

    Best wishes to you!

  • jamieh312
    jamieh312 Member Posts: 3
    edited September 2015

    thank you for replying I am in the UK and they don't do anything for ovarian testing but I have been offered Mri for my breasts nd will be going to see my genetics councillor in October! !!!it is just bad luck haha and I've had a bottle of wine it helped xxxx

  • jamieh312
    jamieh312 Member Posts: 3
    edited September 2015

    Janet how long does it take to be finished all surgery if u opt for the tissue expander implant route x

  • Curlyq1974
    Curlyq1974 Member Posts: 144
    edited September 2015

    Hi Jamieh, sorry for the delay in response. My mom had her surgery in April for the bilateral mastectomy with Tissue expanders placed, and she had her final surgery to implants in August. I am so envious! Me on the other hand... cancer threw a loop in there sooo, I'm still going thru the process... grrrr!!!

  • RedLady
    RedLady Member Posts: 1
    edited September 2015

    I am 36 and was just given my genetic screening results on Tuesday....positive for BRCA 2. Ironically, there is no known history of breast or ovarian cancers but my obgyn requested me to be tested due to a family history of uterine cancer at an early age. I have a son and I'm praying he hasn't inherited this gene!

    I am scheduled for a hysterectomy in a few weeks.  I opted to remove my uterus instead of just the oophorectomy because of the family history.

    I am scheduled for a mammogram this week as well.  I don't have a date yet but will be seeing a breast surgeon that specializes in oncology and specifically these surgeries.  I don't have enough information yet to have made a decision on the mastectomy. 

    Everything seems to be moving in fast forward yet slow motion at the same time.  I hope I am making the right choices since they're permanent. Does it sounds like I'm on the right track??? (Sorry to hijak your post)

  • Moderators
    Moderators Member Posts: 25,912
    edited September 2015

    Hi RedLady-

    We want to welcome you to our community here at BCO. It sounds like you've made the decisions that are best for you, and that's what matters. They're very personal decisions, and reading through some of the stories on our site, you'll find members who went the route you're taking, and members who chose a different path, and it's all the right track. You'll adjust to your new normal soon enough!

    Good luck on your mammo and upcoming surgery. Please keep us posted, we'll be thinking of you!

    The Mods

  • tangerinequeen222
    tangerinequeen222 Member Posts: 21
    edited September 2015

    Hi Jamie and RedLady, I'm so sorry to hear about both of your positive test results. I too recently found out that I was positive for the BRCA2 gene mutation (in January of this year). I didn't know what to do and cried for a long time. Most of my tears were surrounding the fact that I could've passed this on to my kids. I only found out about my family history in December. I've been going for mammograms since I was 25 because of dense breasts (again didn't know a thing about all the breast cancer on my father's side of the family as we were estranged). I would get call backs, biopsies, more images, ultrasounds, blah, blah, blah, for more than 15 years. Then, at 41, I found out about my BRCA status. They sent me for an MRI (my first one despite all my breast imaging drama). The doctor called to say they found a couple of questionable spots on one breast (which would need to be biopsied). The other breast was so spotty, it was hard to see anything. I went for the PBM surgery in lieu of more biopsies and unreadable imaging. Plus, there's so much BC in my family (as I recently learned), men included. The surgery itself was not nearly as bad as the anguish I was experiencing, and now I'm glad I had it done because, though there are no guarantees, it's one thing I don't have to worry about as much. During the process, I posted on here and the nicest, most supportive people helped me through. It made a huge difference. I have expanders in now as I type this. They're not so bad once you're done with all the fills. I'll get my implants in a month from now. In the end, they found 5 things in my breasts, all benign, but only two of them were detected on the MRI and none of them were detected with ultrasound or 3D-mammogram. All these decisions we have to make and they're all so personal. If things had been different for me, i.e. less dramarama breasts or no kids, maybe I would've taken a different path. But my path was the right one for me. Go at your own speed. Think long and hard on things, and remember to breathe. After my implant surgery, I will address my ovaries and surveillance on my pancreas.

  • Moderators
    Moderators Member Posts: 25,912
    edited September 2015

    Dear Members,

    Would you be willing to share your story about genetic testing? (no pressure, only if you are inspired!)

    We are interested in the following questions: What led you to doing the testing? What were your results, and what choices have you made based on the findings? Was payment an issue? How have you discussed these decisions with your family? What suggestions would you have for others?

    Please share your story here, or send us a Private Message. We will be posting your stories here Community Members share their Stories, in order to inspire other visitors to our site who are in a similar situation. If you chose to submit your story, would you please send a photo with it?

    Many, many thanks!

    The Mods

  • tddoucet
    tddoucet Member Posts: 3
    edited October 2015

    Ok, I am super new to the site, maybe an hour now, lol. I too am 35, and just received the call from my doctors office that my BRCA2 is positive. With that being said, my grandmother and my great grandmother, and great-great grandmother all had breast cancer. My mother has not been diagnosed with anything other then cysts, all which were not cancerous. When the BRCA testing first came out I figured I knew what I would do. Now I am remarried, I am not having any more kids. I had an ablation in 2013, and a hysterectomy in 2014, leaving both ovaries as I was not a candidate for hormone replacements because of my family history of cancer. So when I went in for my checkup in August 2015, and was told that the genetic screening was available and my insurance would cover it, I jumped right on it! I thought, this is finally my opportunity to know, then I got the call one week ago. I still think I know what I am doing, granted I have my husband and my mother and kids and family supporting me either way I go, and a husband that makes jokes about me "cutting them off", I know he is trying to lighten the mood. I know that my children, 20, 19, 16, 12, 11, 11, 10, 8, & 6 will understand it, eventually, and I don't really care about others, but I wonder about myself?

    Am I going into another surgery for the removal of my ovaries, just to recover and have my breasts removed, then stuffed? (sorry for the wording, just a bad day) Am I ready for that? Two years ago I was also diagnosed with an auto-immune disease and now I am finally being treated for lupus, whether that is what I have or not. Is this going to help me not be tired after the initial shock my body has of what in the world have you done to me?! This is the first Topic I have found that literally matches my story. I read it and thought, holy wow!

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