Newly discovered BRCA2 Positive

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Shelby77
Shelby77 Member Posts: 1
edited November 2016 in High Risk for Breast Cancer

Hi all!

I'm new to this site but I thought I'd give this a try. I'm 23 years old, and I underwent genetic testing last week for hereditary cancers. The only cancer history in family is Melanoma, in my dad. So when I found out that I was BRCA2 positive, I was in shock.

I guess I'm want to know, how did you guys handle learning you were positive. Have you taken any prophylactic measures? I know that I'm only 23, but I've been researching mastectomy's quite a bit and am already leaning towards that.

I have an appointment with a Breast Specialist and Genetic Counselor. Do you all have any advice for me?

Thanks!

Shelby

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  • Moderators
    Moderators Member Posts: 25,912
    edited October 2016

    Hi Shelby, welcome to Breastcancer.org. We're sorry you're here and concerned, but you've come to the right place! Until other members post their advice and personal experiences, we recommend you to take a look at the following Topic: Important Links for Newbies at High Risk for Breast Cancer

    Hope this helps!

    The Mods

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  • ravzari
    ravzari Member Posts: 277
    edited October 2016

    I don't get my genetic test results for another 3 weeks, but due to a strong family history (nobody prior had any genetic testing done), I decided to have a prophylactic (preventative) bilateral mastectomy back in June to reduce my risk as the youngest relatives of mine that developed BC were in their late 30s, which is where I am now approaching as I'm 36.

    The high risk specialist recommended genetic testing to see if I have either BRCA gene or any of the other 15 they test for in the BreastNext panel.

    If I do turn out to be BRCA-2 positive, I fully plan to have my ovaries, tubes, and uterus removed ASAP, as I'd prefer surgical menopause over a higher risk of cancer.
    For me, it's not a hard choice as I never wanted children and never planned to have children and I have fairly debilitating endometriosis if I'm not on the depo shot, but if children are something you wanted to have I'd highly recommend talking to a counselor about what your next steps should be as, obviously, if you remove your ovaries, tubes, and uterus you'll be unable to have children.

    That, and the choice I made, while the right choice for me, may be the absolute wrong choice for someone else's life.

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  • besa
    besa Member Posts: 1,088
    edited October 2016

    a great resource is "FORCE" www.facingourrisk.org

    In addition to lots of current information you can connect with other women facing the same issues.

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  • omt
    omt Member Posts: 5
    edited November 2016

    Shelby, sorry to hear of the diagnosis. I was recently diagnosed a few months ago, and frankly, the shock never really goes away. Melanoma is a cancer to watch for when you are BRCA2+, as you probably know by now so even if no other cancers exist the melanoma is a sign. Sitting down with a genetics counselor will be the best thing you can do for yourself, at least it was for me because I had so many questions regarding DNA and passing it on to my children. Besides prophylactic surgery, since you are so very young, there is enhanced screening that you may want to look into.

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  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited November 2016

    Shelby, I am so sorry that you had to find out that you are BRCA+, especially at such a young age. When I found out that I am PALB2 positive, which has similar risk as BRCA2 (it's the pathway and locator of BRCA2), plus Chek2, I was devastated--and I'm 60! I have an exceptionally strong family history of BC and other cancers. As such, my 23yo DD decided to be tested and wouldn't you know, she also came up positive for both. I am beyond heart-broken for her that she has to deal with this, and that I gave it to her. I'm sure your parents feel the same way (you had to get it from one or the other.)

    I took my DD to see my BS so she could get a plan of surveillance. She will need yearly US and yearly mammogram, even though she has very dense breasts--she has terrible insurance and a high deductible, so she cannot afford the MRI her BS ordered. Pity, because I have an aunt who had BC at 24. I can't remember exactly the progression of purported intervention, but I do know that the BS mentioned stepping up pro-active measures at age 30, hormone suppression, I think, followed by preventative BMX and hysterectomy after age 35. DD says she doesn't want children, but you know, she's young and could very well change her mind in her 30s. I didn't want kids either at 23, but by 30 it was a whole different ball game.

    I wish you the best and send you my sympathy in regard to the bad news.

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