BRCA 1 positive

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fem62550
fem62550 Member Posts: 1

I am BRCA 1 positive and I am considering prophylactic bilateral mastecomy. I am wondering if anyone has considered or done this and would be willing to share your experience.

Also, I has a breast mri and there are two suspicious areas in my left breast. I am having a MR guided biopsy. We are doing this as opposed to a ultrasound core biopsy. Does anyone have any feedback on the differences between the two? 

thank you

Faith

Comments

  • MRDRN
    MRDRN Member Posts: 537
    edited July 2011

    Hi There.

    Sorry you have to join the site but glad you are getting the help you need EARLY in the process because I think it will make all the difference.  Have you had the oorph? I had the US biopsy because  it was seen on US and actually had clear margins after it.  Three surgeon's advised I do the bi mx since BRCA 1 and now a firm BC dx.  Good Luck.  I never planned to do the P Bi Mx but knew once I got a dx that I would probably need it.  

    Keep us posted and feel free to pm me. 

    MRDRN

  • Soccermom4force
    Soccermom4force Member Posts: 631
    edited July 2011

    Hi Faith,

    So sorry you have need of us but glad you are reaching out!

    FORCE (www.facingourrisk.org) is a non profit organization dedicated to those who high-risk due to genetics (BRCA 1&2) and or family history.

    There are literally hundreds of women there who have undergone bilateral prophylactic mastectomies and will be happy to reach out and help you along this new journey. I will be happy to answer any questions that I can if you'd like .. Just PM me on private messaging feature at the top of this page.

    I'll keep my fingers crossed that the biopsy will come back with benign findings!

    Warmly,

    Marcia

  • machfowler
    machfowler Member Posts: 33
    edited August 2011

    Faith,

     Not sure if you have already had your procedure. I just had both an Ultrasound guided Biopsy (June 11th) and MRI Guided biopsy on another suspicious area (June 23rd). The US biopsy was a little uncomfortable but certainly tolerable once you are essentially numb in the area where they are inserting the needle. 

    I was totally freaked out about doing the MRI guided biopsy because the initial MRI I had the week before had been done in a mobile MRI trailer. It was dark and small and they had to pull me in and out of the machine a few times before I could get relaxed enough to tolerate the procedure. And, even though you are lying down and you would think it would be comfortable enough.... the fact that I was face down just made the tube seem smaller to me. 

    That's the bad part... but here is the good part. I told my doctor I was not looking forward to the MRI guided biopsy because of the trouble I had and she prescribed me a drug to help with the anxiety.

    Additionally, I went to a different lab that actually had the machine in a brightly lit room with the opening on the end facing a window I could see out of. So, the combination of the drugs and better setting help a lot. What also helped was that for the biopsy, they moved me in and out of the machine in short bursts, so that I wasn't just lying in there for 30 mins. The actual biopsy was about the same as the US biopsy in that once you are numb, it's not too much to tolerate. 

    So, in the end, even though I was worried about the MRI biopsy, it really was no worse than the US biopsy. I just need something to help me relax and a nicer environment than the mobile MRI offered. 

    Good luck. Hope this gets to you in time.

    Maria

  • candiR
    candiR Member Posts: 7
    edited August 2011

    Hi Faith,

    I too am BRCA 1 & 2 positive.  I chose to have a PBMX last July at the age of 21.  I would love to answer any questions you might have, or share my experience.

    I can tell you that I have never looked back and questioned my decision.  My mom passed away from breast cancer when I was 9, and I made a promise to myself and my family that I would never let that happen.  It was the best decision that I've ever made, though it was not an easy one to make. 

    My best to you,

    Candice

  • MRDRN
    MRDRN Member Posts: 537
    edited December 2012

    Hi Candi,

    I am just reading your post.  I never met anyone who is both BRCA 1 and 2 before.  I am sorry to hear that and applaud your actions to be your own best advocate! You must be very brave and smart :)  Do you know others who have been positive for both genes? Did I read that right?

  • jenamae
    jenamae Member Posts: 47
    edited December 2012

    Im also brca1 and very young. thinking about nipple and skin sparing with implants, is this what you will or have done?

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