Brca1 positive,,,what now?

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ddmotz
ddmotz Member Posts: 5
edited June 2014 in Genetic Testing

Hello everyone.  I am 45 years old, thankfully am not going through cancer like so many brave people on this site, but am positive for Brca1.  My mom, her mother and aunt were all diagnosed with BC in their late 30's and early 40's.  My mom is now 70 though,,,,so she is a SURVIVOR!!

Now with the knowlege that we both carry the Brca1 gene...what do I do?  I have had excellent screening over the past 8+ years with mamm/ breast exams/CA125 blood work/ and for the past 3 years I have now been getting MRI's  Thankfully, I have not had any scares with any test results but since getting tested for the gene, I am starting to feel like a ticking time bomb.....

 My breast health dr will not really give me any sound advice, as she says it is totally my decision if I have BPM and my ovaries removed.  

 For other previvors out there,,,what have you done?  Is it best to have your breasts removed first and then just wait on your ovaries....we have no history of ovarian cancer in the family, but I understand that having ovaries out reduced your risk of BC by 50% and of course your risk of ovarian cancer by alot as well.  I don't know if I want to go through surgically induced menopause though??????

This website is a great find,,,,I have been on the internet for days it feels like, and would like to hear from someone  who has done some preventive measures and how you arrived at your decision.   Hope to hear from someone soon  :)

 Wishing all those battling for their lives STRENGTH and COURAGE to keep fighting...you are the real heroes!! 

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  • EstherMSKCC
    EstherMSKCC Member Posts: 45
    edited November 2010
    Dear ddmotz,

    I'm sorry to hear that you are facing these difficult decisions about your care. I'm an employee of Memorial Sloan-Kettering Cancer Center and came across your post requesting more information about the cancer risk associated with being BRCA positive, as well as prophylactic surgeries. I am writing to share a few resources that you may find useful as you gather information about these topics.

    The National Cancer Institute's web site offers some good overviews:

    Genetics of Breast and Ovarian Cancer: http://www.cancer.gov/cancertopics/pdq/genetics/breast-and-ovarian
    BRCA1 and BRCA2: Cancer Risk http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA

    Preventive Mastectomy: www.cancer.gov/cancertopics/factsheet/Therapy/preventive-mastectomy

    I hope this information is useful and wish you the best of luck as you decide what is best of you. -Esther

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  • LISAMG
    LISAMG Member Posts: 639
    edited November 2010
    Please visit www.facingourrisk.org , the only non profit group devoted to increasing awareness of HBOC/BRCA related cancers. Explore the web site and messageboards where you will find lots of support & friendships. We provide resources at the local level thru outreach groups and have an annual national 2 day conference held in June. Remember knowledge is power. You were always BRCA positive, but now u can make a difference, whether u choose surveillance or surgery. Best wishes & feel free to PM me anytime for assistance. Innocent
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  • cassou1
    cassou1 Member Posts: 31
    edited November 2010

    i'm brca1 positive, had hysterectomy jan.'10, goingto have pbm this coming jan.  my sister gave me this knowledge.she is deceased, has haunted me. the latest dream was i kept getting surveyed-mammos and mris-still get breast cancer, ended aup 6 feet under-see my sister and she is yelling at me-"i took this test for a reason, so you wouldn't go through  what i went through". its a personal decission, when i finally decided-made totally peace with my self.  not having reconstruction,

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  • BRCA1
    BRCA1 Member Posts: 78
    edited November 2010

    Hi, I am BRCA1 positive , 34 years old with very strong family history of both BC and OC. I created blog for myself mostly, to summarise all the study and my risk. I finally made decision to have mastectomy ( my surgery was on Nov 25) and will get rid of my ovaries and uterus as well next year. Take a look and see if you find any helpful info for yourself.

    http://lifewithbrca.blogspot.com/

    It is very hard to know what is the best for you to do. It is also very personal decision. I am sorry you have to deal with it and best of luck to you.

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  • speckledfrog
    speckledfrog Member Posts: 1
    edited January 2011

    Hi, I'm 28 and found out last oct that I'm BRCA 1 positive. I have a two sisters that were diagnosed with breast cancer at my age, both within 3 years of each other (2007 + 2010), and within a year of having their second child. I have a 16 month old and a 4 month old and am terrified that I may also get cancer soon. That's why I have taken the decision to have preventative mastectomy in oct this year. I'd have it sooner but I'm breastfeeding a baby that won't take a bottle. I can't have oophrectomy until I'm 35-40 which is a bit stressful.  I definately think of myself as the lucky one so far. I have been given a chance. Having said that I wake up most nights with a whirlwind in my mind. I am scared about the surgery, how it will look and how it will affect my husband. He's my best friend and I know he aches at the thought of me going through this. But I can't live in fear that he and my babies will have to watch me go through cancer treatment either. I  know I am making the right choice for all of us. One of my sisters is also planning to have the surgery where the other one isn't. I hope you can make the right choice for you too, all the best x

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  • veryworriedmomof2
    veryworriedmomof2 Member Posts: 2
    edited January 2012

    Hi Speckled Frog-

    I think that you are very brave.  My husband and I went through the difficult decision recently of having him tested. He's positive and we have two baby girls. For the past few weeks I have felt despair, rage and a lot of other awful emotions. We can't do much as we won't know for many years if our daughters are also positive but we can teach them to live a healthy lifestyle and eating habits. Seeing your post has made me feel better. You are young and have a family - knowing what you know gives you a lot of power - you have been checking and aware of risks and can decide to have preventative surgeries. If you didn't know about your BRCA1 your life could be much, much more in jeopardy. It isn't easy knowing about BRCA but I bet that your family is sure glad that you know because it gives you a far greater chance of staying healthy. Sending you positive thoughts and good luck...

    One question out there - knowing that you are BRCA1 positive - how does that impact your decision to have children?  We didn't have an choice or information but I can't imagine not having my girls in my life BRCA or not. Just wondering how others out there might feel....

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