BRCA test

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BellydancerinNJ
BellydancerinNJ Member Posts: 60
edited June 2014 in Young With Breast Cancer

Did anyone here opt to NOT do this test?  I'm newly diagnosed, 28, no family history of it at all (never really been any cancer in my family).  I completely understand the reason and need to take the test, but part of me would almost rather not know.  Is that foolish?  I haven't started treatment yet, so maybe I'll feel differently once I do.  I'm just curious if I would be the only bc patient to never have this test.

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  • BethNY
    BethNY Member Posts: 2,710
    edited March 2009

    I think most people don't want to know b/c they are afraid, but in time, I hope you will see that knowledge is power.

    If you want more info about genetic testing, and why you should consider doing it check out wwwfacingourrisk.org

    I was dx at 26, and had no family history. The only reason I was high risk for being BRCA positive was b/c I am of ashkenazic jewish descent. I tested, and was negative.

    Knowledge is power, especially when you can act on it, and make important decisions that can give you a long cancer free life.

  • cancerkicker
    cancerkicker Member Posts: 99
    edited March 2009

    I was originally diagnosed with breast cancer when I was 28 (that was almost 8 years ago) and I have never been tested for the gene.  I have no significant family history either. 

    I think this is a very personal decision and it has to be made by only you.  People may disagree with my answer but this is what worked for me.

    Since I had already been diagnosed with breast cancer, what would having the gene really tell me?  I am always going to be diligent about my screening/testing.  Would knowing about the gene change anything for me?  In my mind I already act like I have it in some sense - because why did I get it in the first place?

    A friend of my mine did get the gene test and it came back that her and her dad are the only 2 people in the states that have this certain mutation so they don't know what it means.  In her case, she feels that knowing didn't really help her.

    I do agree that knowledge is power and the choice has to be yours.  I guess for me I have chosen not to at this point.  And I do think that the link BethNY gave you would be helpful.

    Thanks!

  • PT63
    PT63 Member Posts: 329
    edited March 2009

    I did get the test because I wanted to know for my daughters.  If I was positive there would be a good chance that they would have the gene and therefore may benefit from close observation/screenings.  I was negative.

  • lexislove
    lexislove Member Posts: 2,645
    edited March 2009

    I have no family history either.

    I was diagnosed at 30. I went back and forth with this and finally...I decided to do it. I agree with Beth , knowledge is power.

    But it basically came down to my 3 year old daughter. I have been tested and still waiting the results...argg Canada, but the genetic councellor say I have about a 10% chance of carrying one of those genes. I know it will come back negative, but when my daughter is old enough she can go and get tested and make her decisions at that time.

    Hope that helps!

  • BethNY
    BethNY Member Posts: 2,710
    edited March 2009

    basic crash course in why we would do genetic testing....

    if you carry the BRCA 1 or 2 mutation, it ups your risk of getting breast and ovarian cancer. Obviously, there is the secondary part of it, that your siblings could be carriers, and your children...

    so it sounds totally scary, right? BUT, in knowing, there is the power to change what may be, even though those changes, some would say are drastic.

    If you've already been dx with breast cancer, getting a positive BRCA result, may help you decide if you wanted to do a bilateral mastectomy, vs one breast.

    Also, if you are BRCA positive, you risk for Ovarian cancer increases. It's different percents depending on which mutation you have.

    OC is sometimes called the silent killer. There aren't very good tests to check for OC. So, some young women who are BRCA positive, choose to have an oopherectomy to prevent their risk of OC,

    You can read tons about this on www.facingourrisk.org

    When it comes to your children, it's a different ballgame entirely... and I'd be happy to open up that dialogue if anyone is interested....

    but if the insurance will cover the testing, you should consider it....

    just my opinion.

  • BellydancerinNJ
    BellydancerinNJ Member Posts: 60
    edited March 2009

    Thanks for all of your honest feedback and opinions.  You all make excellent points.  I'm starting with chemo soon so surgery will be a few months from now, so I still have time to decide about this. 

  • Bany
    Bany Member Posts: 53
    edited March 2009

    Meeting with a certified genetic counselor will help you decide whether or not to go ahead with the test.  they educate you about BRCA and what it means if you are negative and what it would mean if you are positive.  Meeting with the Genetic counselor is not the same as having the test!!  I highly recommend it.  here's my story:

     2000 diagnosed with invasive breast cancer.  Lumpectomy, chemo, rads, Tamoxifen.  39 at diagnosis.  No family history of breast or ovarian cancer.

    Fast forward to 2007, I joined a study to find out if I had BRCA gene.  I was pretty sure I'd be negative, but since I was so young when I had cancer and come from a Jewish heritage, I just wanted to know.  Well, SURPRISE!!   I was positive for BRCA2!!  It was hidden in my dad's side of the family.

     Had I know about the gene, I would have skipped radiation and had mastectomies in 2000.  In 2007, 2008, 2009 I have had prophylactic surgeries (ovaries and breast) and reconstruction.  I have lowered my risk of a recurrence by 98%!! Gotta love that!

     Knowledge is power!!  I do believe that. Why not just meet with a genetic counselor and learn more about hereditary breast and ovarian cancer?!  Can't hurt, and just might help!

    Glad I know now what I didn't know then,

    Bethany 

  • bkc
    bkc Member Posts: 320
    edited March 2009

    I have a huge family history Mom, Sister, Mom's sister all died of BC. Mom's younger sister 25 year survivor. I have one younger sister living.I had the test simply to confirm I carried the genes and to help my nieces and daughters and sister. Surprise negative I don't have the gene and neither does my younger sister.But it is good just to know and has eased my mind.

  • stitchyphish
    stitchyphish Member Posts: 50
    edited March 2009

    I think knowing the BRCA results actually should change your course of treatment.  I was pretty sure I had the genetic mutation (several women in my family have it, and I was diagnosed last year at age 27) but I had the test anyway.  We opted to treat more aggressively because the chances of recurrence are just so high.  You know what else?  I was never too keen on having children and now my husband and I have decided that if we do have children, we'll adopt.  No need to perpetuate this genetic nightmare.

    So far, my sister won't get the test (she's 25). I really wish she would.

  • BethNY
    BethNY Member Posts: 2,710
    edited March 2009

    why wouldn't it change your course of treatments??? For me, had I tested positive, I would've banked eggs and then had an oopherectomy, and then after chemo and all I would've had the embyo implanted in my uterus (my friend is now pregnant from this method)... and I would actively prevent my chance of getting OC.

    But, b/c I was brca negative, I have my ovaries, and they are fully functioning.  I ended up having bilateral mastectomies anyway....

    the point of doing genetic testing at your sisters age, would give her the chance to take action if she were positive, before ever having to hear the words- You have cancer... and go thru chemo and rads and a million other fun things.....

  • stitchyphish
    stitchyphish Member Posts: 50
    edited March 2009

    Not sure if you were responding to my post Beth - I think we're just about in total agreement.  Look closely - I think it should affect the course of treatments.  I just wanted to express that I think that's a really good reason to get the test - it's not just about "knowing" it's also about how it helps you make treatement decisions (and there are lots of them along the way!)

    Also, regarding my sister - I agree.  But, no matter what I say, it's her decision.  I just did my best to let her know about every nitty gritty detail of treatment so she could fully understand the pain she might have a chance of sparing herself. On this side of the fence, I don't understand why anyone wouldn't want to know.

  • BethNY
    BethNY Member Posts: 2,710
    edited March 2009

    lol I'm really retarded and apparently I can't read, cause I thought it said shouldn't... hahahahaha

    You should tell you sis to at least talk to some girls on FORCE www.facingourrisk.org she may be more open to it.....

    I was dx at 26, and I know my friends who are previvors had a really tough decision to make, but having surgery saved them from chemo, and hair loss, etc etc....

    sisters... all we can do is love them, even when we want to kill them....

  • cherneski
    cherneski Member Posts: 726
    edited April 2009

    I feel kinda old being on this side of the board lol. But I am 38 and that is still considered young (about the only nice thing I have been being told lately).  My grandmother had bc around 65 so not a strong history there.  Mom, stage 0 ovarian age 58, and aunt stage 4 ovarian about 60.  Dr.s dont consider that to be to be strong enough history to do the test but because of my age I was tested.  I am waiting results.

    The reason I was tested is because I have 3 older sisters and 2 young daughters.  I would like to know for them, and also myself as if I am positive I "think" I will want a bilateral.  And I can be more closely watched for ovarian. 

  • Renata
    Renata Member Posts: 172
    edited April 2009

    My oncologist has suggested (twice) that I take the test since I was 38 at diagnosis last year and I have a family history of BC and other cancers, not OC though. I have declined. I don't think knowing is going to help me, if I tested positive it only would add more fear and anguish of recurrence and I am in no way having any prophylactic surgery, so I don't see the point. The only scenario in which I'd take the test would be if planning to have children. I'll keep having the high risk screening and hoping for the NED...

  • Alaina
    Alaina Member Posts: 461
    edited April 2009

    I am still awaiting the results of my BRCA test (they were mailed out to my GYN yesterday).

    My GYN suggested I get the test because:

    1.  I got breast cancer at the age of 38 (pre-50)

    2. I got breast cancer while pre-menopausal

    3. I have a family history of ovarian cancer (great-aunt)

    She said if I have the BRCA gene mutation, she will want to take my ovaries, because then the only risk factor I would be missing is Ashkenazi Jewish Heritage (I'm African-American).  I am inclined to agree with her.

    But I do have a question...I've already started chemo (taxotere, carboplatin, and herceptin), which will end on July 24th of this year (herceptin will go into next year).  My tumors are estrogen-positive.

    Is it too late for me to consider harvesting my eggs (post-chemo, post-mastectomy, pre-radiation)?

    Alaina

  • Renata
    Renata Member Posts: 172
    edited April 2009

    As long as you keep ovulating I think harvesting eggs is possible, many women stop their cycles during chemotherapy and resume their periods later, I didn't stop having my periods during chemo but now I'm on Tamoxifen and my periods are irregular, besides Tamoxifen can harm the fetus so I guess the eggs too...as for the mastectomy and radiotherapy I don't think they are a problem at all but your onc will know better. Best wishes.

  • Alaina
    Alaina Member Posts: 461
    edited April 2009

    Hi Kryptonite,

    I will go on Tamoxifen once all my treatments are over since my tumors are ER+.  I guess the question is how wise is it to get pumped full of estrogen after chemo/surgery for ER+ cancer in an attempt to harvest my eggs?

  • Renata
    Renata Member Posts: 172
    edited April 2009

    Not very wise for us I guess Alaina; to be honest I haven't researched about the process of harvesting eggs but if it implies stimulating the estrogen production it is certainly not an option for me since my tumors were 100% ER+. I have read of many cases of women who have been able to conceive naturally after all the treatments, if they were adamant to become pregnant they only asked to be on Tamoxifen for 2 or 3 years instead of the standard 5 years... as if we could foresee our life only one week...Take care.

  • Alaina
    Alaina Member Posts: 461
    edited April 2009

    Well, I got my results today.  I do NOT have the BRCA gene mutation!

    My GYN says she still wants to monitor me every six months, since I have 3 of the 5 factors that increase my risk for ovarian cancer, but at this point, there is no reason to have my ovaries removed unless my breast cancer oncologist feels the need to.  Which I doubt.

  • Renata
    Renata Member Posts: 172
    edited May 2009

    GREAT NEWS!!! So happy for you...

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