BRCA1 positive

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Melissa1001
Melissa1001 Member Posts: 11
edited December 2014 in Genetic Testing

My husband and I about two years ago did 23 and me Gane test just for fun. Mine came back with BRCA1 positive. I didn't even know what that meant until recently. I am 32 now and done with kids. I was wondering how to provent the cancer? And if I did decide to remove my overies and breast would the doctor really do that? I honestly don't have history of any type of cancer so how am I gonna convince a doctor to get it removed? Also I am european and now live in USA, which kind of scares me with enviromenatl changes. My mom is 55 and healthy so far, her mom lived until 77 died of stroke. I am just new to this BRCA and kind of in shock that I didn't know about it earlier.

Now I do have problemes with my left breast and on the 31 I will see my obgyn about it. I was just wondering what type of questions should I ask him about BRCA?

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited December 2014

    You need to talk to a genetic counselor and possibly have the BRCA testing. The 23& Me test does not give you enough info to know whether a mutation on that test is a harmful one or not.

  • Moderators
    Moderators Member Posts: 25,912
    edited December 2014

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  • Melissa1001
    Melissa1001 Member Posts: 11
    edited December 2014

    Do I ask my obgyn about genetic counselor? Or can I just find one on my own?

     

  • besa
    besa Member Posts: 1,088
    edited December 2014

    Go to the website www.facingourrisk.org for accurate current information on BRCA 1 mutations,names of genetic counselors and other physicians who specialize in this. There are also local chapters of "FORCE" which, if you are interested, would put you in contact with local women who are dealing with the same issues. Know that these mutations can be inherited from your father as well as your mother so the medical history on your dad's side of the family is important. (Also there are other cancers, in addition to breast and ovarian, that tend to be associated with the BRCA mutations so a genetic counselor will ask about other types of cancer in the family.)

  • anneoftheforest
    anneoftheforest Member Posts: 52
    edited December 2014

    Yes, do ask your obgyn for a referral to a genetic counselor. The genetic counselor can help get the appropriate testing and many do require a referral. Being BRCA1+ means you do have a much higher risk of breast and ovarian cancer. Your mom could be the carrier and have no problems so far or your father could be instead. BRCA+ men have a higher risk of prostate cancer and a higher risk of breast cancer ... but the risk isn't as high as a woman with the mutation in terms of her breasts. Doctors do remove healthy breast and ovaries of woman who are BRCA+ because of the high risk and it is something that is covered by insurance in most situations.

    I'm BRCA2+ and had my breasts removed because of DCIS in one. I chose to remove my healthy breast because of my BRCA status and that followed my doctor's recommendations as well. I also had my ovaries and fallopian tubes removed to reduce my risk even though they were cancer free because ovarian cancer is harder to detect. Some woman however choose to do increased surveillance such as breast mammograms or MRI every six months as well as pelvic ultrasounds and CA125 blood levels tested every six months to screen for ovarian cancer.

    The FORCE website mentioned by another poster is very helpful in providing detailed info about BRCA+ mutations. There is also a good forum there to talk with others. I remember reading this year about another woman who found out she was BRCA1+ after doing the 23&me test and then went on to get further testing to verify it and learn more about her risk.

    I hope your appointment with the obgyn goes well.

  • Melissa1001
    Melissa1001 Member Posts: 11
    edited December 2014

    I will be 32 tomorrow 😊, what would be the best age to get overies and breast removed? I am not scared, kind of used to the surgeries, sad but true. My fathers family no one every had cancer but had high blood sugar, my mother's family also no one ever had cancer but mainly died of stroke. I discovered this gene by accident and I am glad,I heard manypeople who do get it never had history of any cancers in their families. Which makes sense if they carried a gene. My mom is only 55 years old and I don't know if she or my dad is carring the gene. We are from Europe and I am sure there is no way they would ever get tested, they don't believe in genes just family history. They literlly call me crazy!

    I have two kids and I am done!! I have small boobs and never cared much about them anyway. I never had problmes with my lower part but overies can go too.

  • anneoftheforest
    anneoftheforest Member Posts: 52
    edited December 2014

    Melissa1001 - Happy Birthday! I hope you had a good one and weren't thinking about BRCA stuff too much :) Woman do different things based on what is important to them. Usually doctors recommend the ovaries and tubes to be removed between 35 and 40 or after childbearing is done since ovarian cancer is hard to detect. The risk of ovarian cancer is fairly low before 35. Plus estrogen is important for your heart health and your bones to prevent osteoporosis. Many woman who are BRCA positive that haven't had breast cancer and removed their breasts will take hormone replacement therapy (HRT) as you do go into surgical menopause once your ovaries are removed and that helps with menopause symptoms as well as protects your heart and bones. But taking HRT has risks as well. I can't take it due to my DCIS but I would if I could.

    Some woman choose the route of doing surveillance for their breasts but others choose the PBM. It really varies from woman to woman. On the FORCE website I see woman who are having the PBM in their mid 20's and others who are older and have only had their ovaries and tubes removed.

    Sometimes it is hard for families to accept genetic test results especially when their is little family history. In some families though the BRCA gene is passed from male to male for awhile and so there isn't much cancer in a family. After you go to a genetic counselor that will help give you more more info and help answer your families questions. After my test results came back positive my genetic counselor offered to write out a letter for me detailing the risks for my BRCA2 mutation that I could give to interested family members as some of them would want to be tested as well. That was helpful for me.

    All I said above is really a super brief overview. There is a lot to research and think through. The FORCE website has a lot of info on the preventive surgeries and the pros and cons of surgery and surveillance. The genetic counselor can also give you names specialists to meet with concerning surgeries if you want to go that route or even if you are just considering it.

    I hope things go well with your appointment.

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