Brca 2 positive dcis in rt. breast

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Nyfynss
Nyfynss Member Posts: 1
edited March 2019 in DCIS (Ductal Carcinoma In Situ)

Hi my doctors & my friends who have gone through breast cancer have told me to have the double mastectomy but I just spoke to a survivor who has opted to do only the affected breast. She told me to reach out on this forum to find others who have done similar & speak to them about thier experience? I really want to keep my unaffected left breast even tho I've been advised that I could get a reoccurrence but I feel like they don't know that for sure so the want me to do preventative measures. I'm 41 BRCA positive with DCIS in my right breast. I'm looking for advice my surgery is scheduled for April 3 rd. I'm scheduled for a bilateral mastectomy with reconstruction but I'm really thinking I want to get a single mastectomy with reconstruction on both for symmetry.

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  • Salamandra
    Salamandra Member Posts: 1,444
    edited March 2019

    I have a friend who was diagnosed with IDC and learned at the same time that she had BRCA2. She decided, with the support of her doctors, to do the lumpectomy with radiation, AI pills, and extra surveillance. So, keeping both breasts. That may not be an option for you depending on the size and location of your DCIS, but maybe?

    I think you should get a second opinion, preferably from an NCI designated cancer center, especially if your first opinion wasn't from one. Maybe also genetic counseling. You might be able to do it without rescheduling the surgery at all, but even if you need to reschedule, I think it would be worth it to have the confidence in your treatment plan and peace of mind.

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  • Moderators
    Moderators Member Posts: 25,912
    edited March 2019

    Hi there, Nyfynss! We want to welcome you to our community, although we're so sorry for what brings you here. We know these first days and weeks can be difficult, but you're definitely not alone!

    We agree with Salamandra about the second opinion. There are certainly options available to you, and being as informed as possible can help you make this decision. You may also find some helpful info in our surgery forum: https://community.breastcancer.org/forum/91, as well as our forum for positive genetic results: https://community.breastcancer.org/forum/112. There's a lot to consider, and hopefully the information you find here can help!

    The Mods

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  • Veeder14
    Veeder14 Member Posts: 880
    edited March 2019

    Hi Nyfynss,

    I'm BRAC2 and my cancer was found on MRI as I was being watched once my status was known. I was seen by a breast center NP who gave me the results of my biopsy, and then proceeded to tell me, "we recommend double mastectomy for all BRAC patients" I was of course very upset and told her that's not what I wanted. In retrospect, that NP should not tried to make a decision regarding surgery, outside her scope.

    It took 3 weeks to see the breast surgeon and he said that my cancer was small and he recommended lumpectomy and radiation. He also said due to the BRAC status my insurance would pay for a single or double mastectomy and the choice was mine. I choose the lumpectomy.

    I agree you should seek a second opinion.

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  • blah333
    blah333 Member Posts: 270
    edited March 2019

    I would advise double mastectomy. Sure, they don't know if/when it will happen again, but because of BRCA 2 and your younger age, you have a higher chance for recurrence. You will not really have symmetry with a real breast and a reconstructed breast. My mom had DCIS/lumpectomy/radiation/reconstruction/alteration to that breast and then had to do it all over again when DCIS popped up in her healthy breast. Also, you will have the stress of having to monitor that healthy breast for the rest of your life. Having to have the stress of biopsies is a really drain. If you do have recurrence and it is invasive, it could cause much greater threats to your health. Also bilateral mastectomy would lower your chances of needing to take hormonal drugs. Its sad to have to lose breasts but holding on to one for emotional reasons could be quite regrettable in the future.

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