24 and recently found out I'm BRCA1 positive

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ailish085
ailish085 Member Posts: 2
edited April 2015 in Genetic Testing

only recently found out I'm brca1 positive. Even though my mom is also positive I actually don't know too much about it. But I would luv to hear others story. I have decided I'm going to have a double mastectomy but as I'm only 24 and don't hav children I'm scared about the ovarian side of things

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  • sisterofher
    sisterofher Member Posts: 3
    edited March 2015

    Hi there, I am also BRCA1 positive. I am 31 y.o.

    Haven't got cancer myself, no. But all the female relatives on my dad's side died of cancer (breast, ovarian and throat) when they were over 60 and 70. My grandma (dad's mom) was 77 when she passed away of ovarian cancer. She had breast cancer in her 50-s as well. So it is something to do with menopause (post menopausal cancers).

    I have decided that I am NOT going to remove either breasts or ovaries. I was at the hospital talking to a genetisist who wanted to forward me further to a surgeon in order to discuss the mastectomy procedure. I took my decision to not remove anything out of my body unless I have a lump. Meanwhile I have decided to be proactive and educate myself as much as possible about the do's and don't's when it comes to cancer. It is so much information available right now on the matter of prevention. Tons and loads.

    There are diets, supplements, integrative doctors and nutritionalists that can help when it comes to prevention. So I have taken this path now and I want to live my life as natural as possible.

    I am currently studying medicine (going to become a doctor) and I am a teacher and a pharmacy technician as well. My personal interest for health and prevention of desease is huge.

    In the beginning after getting the results of the blood tests I wished for a double mastectomy, but the hospital did not promise me good-looking breasts as an end product. Besides where I live (Norway) they insert saline pouches (not the body fat), so that was just out of the question for me. Otherwise I would have to pick a private clinic I like and pay for everything from my own pocket. No thanks. I cannot afford it just yet.

    When it comes to the removal of my ovaries, I am firm in my decision. Their absence would mean a hormonal havoc for my body. I would no longer feel young, my joints will start aching, I will have nightsweats, hot flashes, brain fog etc. No thanks. My sis who is a breast cancer survivor, by the way not BRCA positive, is only 36 but she is now suffering from all these nasty menopausal symptoms. Her ovaries stopped functioning after the chemotherapy.

    Please, keep in mind that most of all the breast cancer cases are NOT BRCA positives. The ovarian cancer risk is a lot higher for all of us BRCA ladies when our ovaries do not function the way they have been before, i.e. when we reach menopause.

    You are still very young and I think that you should not think about your ovaries just yet. If they promise you great looking breasts however, well, it's your choice. Please make sure you read on the dangers of hormonal pills and hormonal IUDs among BRCA positive women (simply do a google search to find articles and studies about that). My advise - never put any synthetic hormones into your body EVER. There are other prevention methods that are non-hormonal (condoms, copper IUDs) out there. Use these instead.

    Good luck! God bless!

  • besa
    besa Member Posts: 1,088
    edited March 2015

    If you haven't already seen it - go to the web site www.facingourrisk.org

    "FORCE" has good, current information and offers the opportunity to connect with other women dealing with the same issues.

  • Charliebob
    Charliebob Member Posts: 1
    edited March 2015

    hello, I'm 23 and I found out I had BRCA1 & BRCA2 when I was 17. My dad has the genes that have come from my grandmother who had breast cancer twice and died of ovarian cancer at 60, my auntie also had breast cancer twice and died of ovarian cancer at 46. There isn't much information on my risk as it's unusual to have both so I see a breast surgeon regularly who researches in the genes and she's been seeing me every year to see whether I've decided to have the mastectomy or not. Really unsure what to do I just know that the years keep passing by quickly. I've got a 2 year old son as well that I have asked to be tested but not allowed until he is at the right age to give consent, would rather have him tested because then if he isn't carrying the genes I wouldn't have anymore children so I could stop it, there doesn't seem to be a way round it. I would like to live a natural life but after seeing what my aunt and nana have been through I'm too scared not to have the mastectomy and hysterectomy just don't really want to be having them done at a young age.

  • Moderators
    Moderators Member Posts: 25,912
    edited April 2015

    Hi Charliebob, sorry to read of your situation, but welcome to BCO.

    You may find some useful articles on our main site like BRCA1 and BRCA2 Testing to Predict Breast Cancer Risk and What to Do if Your Genetic Test Results Are Positive .

    We certainly hope that your son is clear of especially the BRCA2 gene, that impacts male risk of BC.

    You have some difficult decisions to contemplate, at such a young age, but at least you know that info now and can formulate a plan for the future.

    Wishing you the best.

    The Mods


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