BRCA+ and under 40 yrs old? Anyone?

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jillyG
jillyG Member Posts: 401
edited June 2014 in Genetic Testing

I was diagnosed with er+ IDC in Nov 2008 when I had just turned 33 years old.  I am now 34 and I get my BRCA results on Friday afternoon.  When I had my genetic counselling the geneticist thought it was likely I am positive due to my age and history of prostate cancer on my father's side.  I am premenopausal and continued my period through chemo and the past year and a half of Tamoxifen.  I am having regular periods and have no signs of menopause. 

I am looking to hear from other women under the age of 40 who found out they were BRCA + and hear about what their decision was regarding oopherectomy, and if they had one, how are they doing now.  My general surgeon said he would not recommend it under 40 and my gynecologist said not under 45.  They both agreed the risks outweigh the benefit, but I'm not so sure.  Ovarian cancer terrifies me.

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  • kt57
    kt57 Member Posts: 425
    edited August 2010

    HI jillyG:    Been wondering about your genetic test results.  Seems like it has taken a long time.  I don't fit the "young" part of your inquiry, but have some suggestions.

    After finding out my BRCA2 status, I've learned all I could about it.  These reference were very helpful for me:  www.facingourrisk.org     You will find many young women grappling with the question you are asking.   The other is a new book "Positive Results" by Joi Morris and Ora Gordon.  It, too, focuses on BRCA1 and BRCA2 mutations and also talks about hereditary risk in general.   

    The timing of the oopherectomy is a personal choice -- you will have to weigh the risk benefit of estrogen depletion vs. ovarian cancer.   The most important thing to consider is what is your real risk for ovarian cancer at the age you are now vs in the future.    Most believe keeping your ovaries until 40 is safe, then each year after your risk increases...how much?  that is the question to research.  And is that risk worth losing your estrogen -- which keeps you healthy in many other ways -- bone, heart, brain --- It is a tough decision.   

      You can  live well being estrogen depleted -- I am.

    ((((HUGS))))) to another J Jewel.   

  • jillyG
    jillyG Member Posts: 401
    edited August 2010

    Thanks Kathy!  The length of time to get results here (Canada) is nuts.  Apparently the only place that does the test is in the states so we do the blood test here and then it gets sent right off but our results usually take up to 1 year (mine came back in 9 months, I had it in December).  I am going to check out those resources you mentioned, thanks for giving me that info, that really helps.

    Hugs to my January Jewel sister!

  • RobinW
    RobinW Member Posts: 5
    edited August 2010

    Hi jillyG

    I am 34 and was just diagnosed with BC, which prompted genetics testing.  I was very lucky, as I had my test results in 10 days.  Waiting is horrible, so I can only imagine what you're going through.  I am BRCA1+  I am getting a bilateral mastectomy on Sept 3 and I can not even fathom getting my ovaries out right now. I am single and I don't know if I want to have more kids, and also I feel like i'm too young for it !  My genetics counselor did advise me that I should start seriously thinking about it between the ages of 40 and 42.  So for me, it's just one thing at a time.  My breasts are my priority right now.

  • Sandals
    Sandals Member Posts: 104
    edited August 2010

    I'm 37, was diagnosed just over a year ago and got results of BRCA1 in May of this year.  I'm currently researching to get a Bilateral Mastectomy and Reconstruction.

    I've no kids and have been advised that I can hang on to my Ovaries until 40 but definitely no longer than 45.

  • Taty98328
    Taty98328 Member Posts: 27
    edited September 2010

    I`m 37, have 2 kids, was diagnosed 01/14/2010. Got my result of BRCA1+ in March. I will do Bilateral Mastectimy in May 2011 (now I`m on Avastin trial) and will remove my ovaries in the same time. My mom was 9 year survivor of BC and died 18 months ago from ovarian cancer. This is no question for me. But my doc told me that I can keep them till 40.

  • Latte
    Latte Member Posts: 1,072
    edited September 2010

    I just turned 40, and my onc recommended that I get an ooph as soon as possible (either at the same sime as my mx, or soon after), becvause she said that ovarian cancer is hard to detect until it is advanced...

  • beija
    beija Member Posts: 42
    edited September 2010

    I turned 33 on august and i had a lumpectumy.  my results are positive and on moday 13 im having a bilateral mastectumy and reconstruction done.  then my ovaries are going i already have my grandma who has ovarian cancer and she is terminal. 

  • BRCA1
    BRCA1 Member Posts: 78
    edited September 2010

    Hi, I am 34 and BRCA1+. Have two kids and not planning any more. Trying to get app with Dr to schedule surgery to remove ovaries and tubes. This surgery will reduce risk of ovarian cancer and breast cancer ( 50%) , also it is suggested d it need to be done before 40 for more benefits. I am doing this one before AlloDerm with one step implant recon will be available in Canada ( can't bring myself to do expanders on healthy breasts).

  • Klassyklaws
    Klassyklaws Member Posts: 20
    edited September 2010

    Hi I am 37, was diagnosed BRCA1 this year. Have already had preventative bi-lateral mastectomies without reconstruction. Will get around to that later. Having complete hysterectomy this year as well and will do recon next year. I am black and white matter of fact kind person and this was only option for me as 14 woman have died in may family to this disease. I am mum to 5 kids and am now more worried about which ones of those have the gene. My eldest daughter is 19 ans she is neg. The next one to know is my son who is 18 in Dec. But them I have to wait another 8 years until the rest start being tested.  Good luck with whatever choices yiou make. Yours in Love asnd Light Kelly. x

  • TiffanyF4
    TiffanyF4 Member Posts: 171
    edited September 2010

    I am 35 diagnosed with triple negative breast cancer at age 34. BMX oct 2009 I am BRCA1+ and I had a oopherectomy in July 2010.  I have lost so many family members to breast and ovarian cancer I didn't think twice about it. However, I have already had 2 children and had made the choice with my husband to not have anymore children.  I understand it would be a very difficult choice if you didn't have a child or wanted more children. Pray about it the answers will come!

  • joannar
    joannar Member Posts: 30
    edited October 2010

    I am in a very similar situation.  I was diagnosed with triple Neg BC 5 years ago at age 33.  I did a Bilat Mast. and chemo and I am BRCA1+.  I now have my Prophylactic oophrectomy scheduled for November.  I have spoken to a bunch of different doctors about the possibility of using Hormone Replacement Therapy (HRT) and the mostly the answer I get is- Theoretically I should be fine. I have no more breast tissue and the cancer I did have was hormone neg.  But studies have not been done to prove this yet. My oncologist wants me to wait and see if I am symptomatic but for me it is about more than just hot flashes.  I am worried about Heart disease, osteoporosis, cognitive impairment and overall morality. I am only 39.  It is such a hard decision. Any one else considered doing HRTs???

    Joanna

  • tibet
    tibet Member Posts: 545
    edited October 2010

    JoannaR

    I am also BRCA1 positve and gonna to have Prophylactic oop shceduled for Nov. May I ask, did your chemo treatment if you had, 5 yrs ago put you at menopause? My doctor said, the symptomatics won't be that different after oop from chemo menopause. I anyway don't think HRT is safe and there are other ways to help the heart, for example exercise, running, etc...Vit D 3 helps osteoporosis. What was your treatment and dx 5 yrs ago?

  • kittycat
    kittycat Member Posts: 2,144
    edited October 2010

    I was 39 when I was originally dx with BC and I'm BRCA1+.  I had an ovarian cyst that grew to about 4.3 cm.  They were planning on removing it in May of 2010, but I found out I had BC again in April.  I'm in chemo right now and will do rads.  After that, I will have a hyst/ooph.  Have you spoken to a gyn onco?  That's who will do my surgery (laproscopically) along with my obgyn (not sure the need for 2 doctors).  I've never had children (had 2 miscarraiges in my early 30's).  I wasn't planning on having children, but I guess after chemo and this surgery, it won't be a choice.  Oh well, I just don't want to deal with cancer again.  My gyn onco said that being BRCA1+, I have a 60% chance of developing ovarian cancer and it's usually far along when they find it.  Ughhh....

  • joannar
    joannar Member Posts: 30
    edited October 2010

    newalex,

    I think this post should have my diagnosis at the bottom.  Mt treatment was dose dense AC+T and yes it put me into menopause.  The hot flashes sucked but that is not why I am considering the HRT.  I think the most concerning to me is the cognitive impairment.  That part really freaks me out.

  • DivaJMusic
    DivaJMusic Member Posts: 75
    edited October 2010

    Hi There, I am 31, BRCA1+ and going to have a BMX & ovary removal at the same time.  I have no children and the thought of having a 50% chance of passing this gene on to another soul breaks my heart.  There are plenty of kids who need homes if and when I am ready to have them.

    I am scared out of my gourd as I've never even spent a single night in the hospital nor had any surgery.  Boy does this seem to start me off with a bang.

    Best of luck to you all.

  • DianaWolfson
    DianaWolfson Member Posts: 4
    edited October 2010

    HI jillyG. I totally understand where you are coming from. This forum and Force really helped me through these decisions. You are not alone is this complicated world worrying about BRCA and what it means. thank goodness for Sue Friedman for helping so many women. And I just found out about a book thru FORCE called Previvors  by Dina Rothport. Maybe it can help you, too.

    But definitely check out FORCE for more information. It's such a great site. 

    xoxo 

  • Latte
    Latte Member Posts: 1,072
    edited October 2010

    jillyG - i was 39 at DX and am BRCA1+. I will have an ooph after i finish chemo, surgery, and rads. my drs  and genetic counsellors said they recommend definitely having an ooph after the age of 40, and to seriously consider doing it after the age of 35. hope this helps.

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