BRCA1 Positive and In Need of Advice...

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MDSpence
MDSpence Member Posts: 2
edited June 2014 in Genetic Testing

Hello Everyone,

I recently had genetic testing done and am positive for the BRCA1 gene which I inherited from my mother. Cancer is a very commom thing in my family.

My mother had breast cancer when she was 30, thank God she is still with us. My grandmother had it 6 times before she passed away. I have three aunts. One other had cancer and is a survivor. Another had the testing done and, upon a positive result for this gene, she had a mastectomy done. My other aunt got cancer and died when she 21. I am currently 21 and this recent news has me very nervous and stressed.

I found a lump 12-24-2012 and the results came back benign and that led to my getting the testing done. So the path to take now is preventative measures.

I have a doctor's appointment next week where we will discuss whether I am going to get MRIs once a year or get a mastectomy.

I am hoping to hear opinions from everyone about the decisions you have had to make and what you would recommend. A mastectomy seems a serious step, but my husband and I are both leaning towards it because I don't want to be afraid everyday for the rest of my life. We have two small children that I want to be around for.

As far as I know, I could get an MRI that comes back clear and a month later something could start and have 11 months to grow before being detected. Please help. My head is spinning!

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Comments

  • ladyboss1997
    ladyboss1997 Member Posts: 202
    edited May 2013

    I am BRCA1. I had a lumpectomy in 2011 (before I knew I was BRCA1 positive). I am doing extra screenings. I have alternating mammograms and MRI's every 6 months. I had an oopherectomy last April. But I am much older than you. If ANYTHING of concern shows up on those screenings, I will lop those puppies off. You have a high risk of breast cancer and ovarian cancer. What decision you make is important to your mental well-being. I chose the oopherectomy because screening for that type of cancer is not very good. My surgeon recommended the screenings for breast cancer since I already had a lumpectomy.     

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  • Shiela
    Shiela Member Posts: 4
    edited May 2013

    MDSpence,

    Sorry to hear you have to go through this. You might want to check out this website http://www.facingourrisk.org/ 

    I attended their annual conference 2 years ago and learned a lot from the renowned experts they invited and the participants. It helped me to make my decisions.

    Think this way may help you feel better: you are lucky to have a chance to reduce your risk of getting this deadly disease.

    Good luck!

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  • barsco1963
    barsco1963 Member Posts: 2,119
    edited May 2013

    MD - sorry that you are having to deal with this at such a young age. Please do as much research as possible before making your decision on how to proceed and know that there is no "right or wrong" path to take.

    If you have had the testing, then you probably have a genetic counsellor with whom you can discuss options. Remember that testing positive for the gene does not mean you will definitely get cancer, but it does increase your risk over that of the general public who do not have the gene.

    I am BRCA2+ and have decided to take the cautious approach by keeping an eye on things and making sure that testing/screening is done on a regular basis.

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  • Kay0891
    Kay0891 Member Posts: 1
    edited May 2013

    I am 21 and had a double mastectomy at 19. It's not an easy decision to make, but I had just watched my sister going through chemo with a 5 yr old son to take care of and knew I didn't want to have to go through that. Also having an extremely strong family history, I kind of knew it was only a matter of when I would get cancer not if. They found precancerous cells in the tissue removed and I admit I might have rubbed it in the dr.s face a little when he told me (he didn't want to do the surgery because "It simply wasn't something done on people my age") so my best suggestin is to remember that there's a huge difference between what a previvor goes through compared to a survivor and I am sure hell glad I fall into the first category. Still the ovarian issues are a huge debate for me :(single and wanting a lot of kids in this economy is kind of unrealistic) so I guess we all decide which chances we're going to take as for me, I'mm leaving those suckers in til I have at least 3 kids lol 

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  • Moderators
    Moderators Member Posts: 25,912
    edited May 2013

    MD and Kay, so sorry you are for what you have gone through, or are considering doing. These are not easy decisions, especially at your ages!! 

    We are thinking of you!!
    Melissa and the Mods

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  • MDSpence
    MDSpence Member Posts: 2
    edited May 2013

    Thank you, Everyone!

    I did decide to get the bilateral mastectomy and reconstructive surgery. I am very confident in my decision and thank you all for your thoughts.

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  • Miller1353
    Miller1353 Member Posts: 84
    edited May 2013

    I am glad you are at peace with your decision. My 18 year old elected to test. I thought she was young, but when I considered that she could use the information to make informed decisions about her health, I was supportive. I guess what I would share with you is that I would have made the same decision to have the PBX. If I knew I was BRCA+ before being diagnosed with bc, I would have run to the surgeon. Having cancer was terrible, just terrible. I am not saying that it was not doable, but if I could have avoided it, man, I would have jumped at the chance.

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  • Michele2013
    Michele2013 Member Posts: 350
    edited May 2013

    I am brac 2+ and one of my aunts was not happy or felt like I was interfering with her life by telling her. My other aunt was tested and she is negative. Should I tell my other side of the family(mom) side. She has been estranged from me for most of my life. Do I owe it to them to make them aware??



    Soooo confused

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  • Blessed85
    Blessed85 Member Posts: 3
    edited September 2013

    MDSpence I can totally understand what your going through. I'm 28 and I also have BRCA1 mutation and a strong family history of breast cancer. My mom passed away from breast cancer at 29. I just found out I had the gene in May and I knew I had to be proactive instead of reactive. I also have three kids and my husband is in the Army so the kids really count on me because my husband has to leave so much. In July I had my ovaries removed and tubes and August 6 I had a bilateral Masectomy with DIEP FLAP Reconstruction. The healing is kind of hard but I'm glad that breast tissue is out my body. I don't regret my decisions at all. It's your body do what you feel is best in your situation. I will pray everything will be fine!

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