brca 2 positive...what to do

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Cherries58
Cherries58 Member Posts: 17

I tested positive for brca 2 last year and have have my uterus, tubes and ovaries removed as well as both breasts.  I don't regret it.  Now my sister tested positive.  No sign of cancer yet but my mother died of bc and another sister survived it twice.  Anyone have any advice for her? Also has anyone had their uterus removed with ovaries and regreted it?  Her dr says not to do it.  Mine said to take everything out.

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  • LISAMG
    LISAMG Member Posts: 639
    edited March 2010

    This seems to be a highly controversial area for many BRCA+ women, based on different opinions that sometimes vary widely among gyn oncologists....a hot topic currently being debated. I would recommend 2 opinions from BRCA savvy oncologists and then decide what is best. Interestingly, a new study done at Cedars Sinai by the well known Dr. Beth Karlan directs this very same question and the clinical implications seem unknown with new findings of tubal remnants being left behind on/or near the uterus side, but most ovca seem to originate on the ovary side of the fallopian tubes. See link below for more information regarding this article posted on the FORCE web site.  Are you & your family aware of the FORCE organization specifically devoted to hereditary breast/ovarian cancers??!!

     http://www.facingourrisk.org/messageboard/viewtopic.php?f=306&t=35474

  • ElaineD
    ElaineD Member Posts: 2,265
    edited March 2010

    So sorry to hear your news. It's such a  personal decision to make, I can't really offer any advise. (I too, my daughter, and several cousins are also BRCA2).

    I opted to have everything removed-and yet, here I am, stage 1V (ie terminally ill with bc, with mets to pleura, liver and bone). So even having the surgery is no guarantee of staying healthy.

    If she opts to do nothing, she would of course be closely monitored. Depending on her personality type, she may be able to live with that-but only she can judge.If however, she worries to any excessive degree, then she may prefer to do this as a way of reducing her risks.Good luck. Tell her to take her time over this decision-it's emotionally quite hard to have prophylactic surgery, as I'm sure you know. Even if she decides to do nothing at present, she can always change her mind at a later date.

  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited March 2010

    Definitely a personal decision -- there is no right answer.  Age is also a factor and you didn't mention that.  I'm 51 so losing my ovaries is no big deal to me and the chemo has already put in menopause.  My daughter hasn't been tested yet but at 30, if she's positive, it's a much different decision.  I'll be supportive of whatever she is comfortable doing.  My mom, positive but age 80, second cancer dx last May with stage I IDC just had a lumpectomy and rads.  She is taking Femara but that as much as she is willing to do at her age.

    Information has been important in our family.  My daughter is a strong researcher and has some additoinal access into databases because of her job working for a university prof.  So she has been using the FORCE website and her own research to learn as much as she can for the family.  She was able to determine that there a region on the BACR 2 gene that raises the risk of ovarian cancer to the level of the BACR 1 mutation.  But our mutation falls outside that area so, although it is higher than normal, it is not as high as BACR 1.  This is the type of information she is gathering so as relatives get tested and come back positive we can share this to help with their decision making.

    The actual risk of breast cancer also depends on the specific type of mutation.  In our case the amount of information is so limited we don't know what the real risk is.  We assume it's high just because we don't know otherwise.

    If your sister chooses to do so, talking with a couple of oncs sounds like a good suggestion.  Maybe try to get to a NCI designated cancer care center.

  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited March 2010

    LISAMG -

    I tried your link and it took me to the FORCE forum but it was blank.  It didn't take me to a specific topic.

  • LISAMG
    LISAMG Member Posts: 639
    edited March 2010

    Ana, You must first register on the FORCE web site to have access to the articles. this can be done as guest and/or anonymously too.

    Here is the link to the article mentioned from above:

    Does risk-reducing bilateral salpingo-oophorectomy leaved behind residual tube?

    http://www.ncbi.nlm.nih.gov/pubmed/20110118?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed

  • NikiC
    NikiC Member Posts: 30
    edited March 2010

    Last year I found out that I was BRCA2 + after having an abnormal MRI (and a normal Mamm) then a biopsy to find atypical cells (no cancer).  I chose to have a prophylactic BM with immediate reconstruction, did genetic testing and then a year later a prophylactic oophorectomy.  My mom and sister are both survivors also with the same mutation.  They too had the same surgeries that I had.  We have a mutation that is yet to be identified so there were no percentages to help us decide what our odds were.  I never hesitated to have my surgeries and never regretted it one bit!  I now have the peace of mind to not worry so much about some day getting cancer and then having to go through treatments and the worry of mets.  Granted I know it's not 100% effective but it's close enough for me.  I am 50 years old and so going through menopause was no big deal.  I love my breast reconstruction and think I look better now than before.  I think the decision I made was one that could only be made by me ultimately and I always knew that that is what I would do.  I read once not long ago that there has never been a reported case of ovarian cancer in the part of the tube that is still attached inside the uterus and I felt that having a hysterectomy was not needed.  Everyone has a different story and decisions should be made independent of other peoples stories but it is nice to hear how others came to their decision.  Best of luck.

  • Cherries58
    Cherries58 Member Posts: 17
    edited March 2010

    Oh my gosh ElaineD, I'm so sorry for you. How are you feeling now? How long after your surgeries did you find the cancer? Thank you for sharing your story. I realize all my my surgeries isn't the cure but I feel a little safer. Good luck

  • Cherries58
    Cherries58 Member Posts: 17
    edited March 2010

    Oh my gosh ElaineD, I'm so sorry for you. How are you feeling now? How long after your surgeries did you find the cancer? Thank you for sharing your story. I realize all my my surgeries isn't the cure but I feel a little safer. Good luck

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