BRCA Negative! Not sure if Im happy or not?

AnnabelleandGenevievesmommy
AnnabelleandGenevievesmommy Member Posts: 9
edited March 2014 in Breast Cancer #1
So...yesterday was a big day for me. Lumpectomy and Sentinel Lymph Node Biopsy. They only took the Sentinel and said it "looked" clean. Waiting for results, but thats about as good as I could have expected.

I also found out yesterday that my BRCA test came back negative. This should be great news, right? I think I had myself so sure that it was going to be positive - my aunt, grandma and great aunt had BC on my dad's side and my grandma and great grandma had BC on my mom's side (my mom died, trauma, when she was 27 yrs)...and my grandpa had testicular cancer too. How could it be negative??

The real issue: I thought that if it was positive I would have a double mast and ooph. Yeah, that would NOT be easy but...at least I would know why I got BC at 31 yrs old right? Then I could do the proph surgeries to prevent it from coming back. Now I am at a loss. Why did it come so early? It is almost certainly genetic, but a gene mutation just not discovered yet? I also have 2 young girls (ages 1 and 3) and at least if I knew I was BRCA Pos then I could have them tested at an early age and drs would agree to early mammos, etc.

Thanks for reading to my rant if you got all the way through it. <3

~ Heather

Comments

  • Dawne.Hope
    Dawne.Hope Member Posts: 823
    #2
    Genetic Counselor
    Dear AnabelleandGen...

    I would most definitely talk to a genetic counselor. If you're being treated at a cancer center, they should have some available. If not, talk to your onocologist to find out where you can get in contact with one.

    I was 39 when diagnosed, my mom died from BC, my grandmother had BC, cousins on both sides have had it and I tested negative for BRAC1 & 2. I went to a young survivor's symposium earlier this year and there was a genetic researcher there and he said that for sure there are genetic links they haven't discovered yet, they're working on it. I'm sure there is some genetic link in my family and it sound very much like there is one in yours. The decision you have to make is a massive one and one in which I believe talking with a genetic counselor would be an important variable in your decision.

    I opted for a BMX and it was easily the most difficult decision I've ever had to make. I don't regret it. Be well informed, read a lot, and then do what you feel in your gut.

    Bless you,
    dh
  • Dawne.Hope
    Dawne.Hope Member Posts: 823
    #3
    Dawne.Hope said:

    Genetic Counselor
    Dear AnabelleandGen...

    I would most definitely talk to a genetic counselor. If you're being treated at a cancer center, they should have some available. If not, talk to your onocologist to find out where you can get in contact with one.

    I was 39 when diagnosed, my mom died from BC, my grandmother had BC, cousins on both sides have had it and I tested negative for BRAC1 & 2. I went to a young survivor's symposium earlier this year and there was a genetic researcher there and he said that for sure there are genetic links they haven't discovered yet, they're working on it. I'm sure there is some genetic link in my family and it sound very much like there is one in yours. The decision you have to make is a massive one and one in which I believe talking with a genetic counselor would be an important variable in your decision.

    I opted for a BMX and it was easily the most difficult decision I've ever had to make. I don't regret it. Be well informed, read a lot, and then do what you feel in your gut.

    Bless you,
    dh

    A couple of more things ...
    A couple of more things ... If my memory serves me correctly I think the genetic researcher said that only 2% of all diagnosis of breast cancer are postive for the BRAC1 and 2 gene. There have to be more genetic links out there. His name is Dr. Paul Goodfellow. Here is a link that explains his research.

    http://www.thedoctorsvideos.com/video/16099/AIDS-War

    And ... soooo happy it looks like you're going to get a good pathology report. Praying for a good one!
  • PinkPearl
    PinkPearl Member Posts: 280
    #4
    Glad your surgery went well! and
    wishes for a great biopsy result. I know what you mean about wondering what the BRCA results really mean. I am waiting for mine now. The suggestion above about seeing a genetic counselor is a good one. My cancer center has one and she said she doubts mine will come back positive because there is no ovarian cancer in our family and she says they usually go hand in hand. I didn't know that. My maternal grandmother, mother and aunt and all three of us (sisters) have had b/c. I am older than you are and am also concerned for my daughter (29 and two neices 20 and 22). Hopefully when yours are older more reseach will have been done. I can say that with your family history your girls should not have to beg for early testing. They did a baseline mammo on my daughter at 26 even though I had not been dx at that time. I understand the rant. So much info is thrown at us so fast, I can barely comprehend it all at once!
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #5
    genetic but BRCA negative
    Same boat here. Terrible family hx: mayself and 2 sisters with breast cancer, Dad and uncles with colon cancer, paternal grandmother and her 3 sisters all with breast (one with breast and colon), etc. My BRCA was also negative as was my younger sister's. My surgeon says we definitely have a genetic problem, but it just has not been identified yet.
  • TraciInLA
    TraciInLA Member Posts: 1,994 Member
    #6
    CypressCynthia said:

    genetic but BRCA negative
    Same boat here. Terrible family hx: mayself and 2 sisters with breast cancer, Dad and uncles with colon cancer, paternal grandmother and her 3 sisters all with breast (one with breast and colon), etc. My BRCA was also negative as was my younger sister's. My surgeon says we definitely have a genetic problem, but it just has not been identified yet.

    Add me to the "family"
    I was diagnosed last year, at 40. My father only has 2 sisters, and both are breast cancer survivors -- we've all been tested for BRCA, and we're all negative. But it seems pretty logical that I inherited a gene, or a tendency, or something, from my father's side.

    A breast cancer specialist I consulted with said what everyone else here has heard: There's almost certainly genetic component(s) to breast cancer that just haven't been identified yet.

    You're right, Heather -- negative nodes and negative BRCA mean that you'll have to make more decisions that would have been basically made for you if you were BRCA postive.

    But girl, you just had surgery YESTERDAY! And you don't have to make these decisions nownowNOW. For now, please rest well from your surgery, and find a small way to pamper yourself and celebrate the good news.

    Traci
  • Eil4186
    Eil4186 Member Posts: 949
    #7
    Heather, I can understand
    Heather, I can understand how u r feeling. I am the 4th to have bc in my family and my test results were negative also. But my geneticist said it is definitely genetic, the gene is just unknown. So, I would bet that is the case w/you. With all the breast cancer in your family, I will bet the docs will suggest early mammos for your daughters.

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