DCIS and BRCA1+ Lumpectomy next Monday

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Justbreathe81
Justbreathe81 Member Posts: 2
edited May 2016 in DCIS (Ductal Carcinoma In Situ)

Hello. This is my first post and I've never posted to a board before. I am 53 yo and was diagnosed with DCIS, grade 3, ER/PR + on April 11, after two mammograms and a stereotactic needle biopsy. I then met with a genetic counselor and due to my Ashkenazi Jewish background and family history of cancers on both maternal and paternal sides, was tested for the BRCA genetic mutations. I decided to go ahead and schedule my lumpectomy before receiving the results. Unfortunately, I tested positive for BRCA 1. Now my surgery is in a day and I have to figure out what I'm going to do next about the new information. The genetic counselor offered to present my case at the consultation. Has anyone had similar circumstances? What did you do? I would love a roadmap - there are choices for prophylaxis and they are confusing. Thanks


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  • Moderators
    Moderators Member Posts: 25,912
    edited May 2016

    Hi Justbreathe81, we are sorry you find yourself in this situation, but wanted to say welcome! We're so glad you've found us!

    We know all this can be very confusing, specially when your surgery is in one day! Maybe you could postpone your surgery to give you more time to talk to your medical team about these results, and along with them make the best decision. Until you get responses from other community members here, you may want to take a look at the following article from the BC.org main site:

    What to Do if Your Genetic Test Results Are Positive

    Hope this helps! Please, let us know how everything goes.

    The Mods

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  • Annette47
    Annette47 Member Posts: 957
    edited May 2016

    Hi there - so sorry you find yourself in this position! In addition to the link the moderators posted, there is also a forum here (further down the main page from the DCIS forum) for people whose genetic tests came back positive, and you might get some good information there. There is also a website (I don’t remember the exact name but the group that runs it is called Facing Our Risk) that might be helpful.

    I too am an Ashkenazi Jew, so when I was diagnosed at 45 I did have the BRCA test as well, but mine was fortunately negative, although I had plenty of time to think about it while waiting for results. I’m not 100% sure whether I would have gone ahead with a prophylactic mastectomy (although I would certainly have considered it) as I was planning on looking into what would be entailed by more active surveillance such as regular MRI’s but I’m pretty sure if I was facing an increased risk of ovarian cancer from it, I would definitely had an oophorectomy. My thinking was that breast cancer is both easier to detect early and treat, but ovarian is sneaky so by the time it is found it is much harder to deal with. As I said,my test turned out negative, so who knows what I would ultimately have decided if it wasn’t, but thought I would share my thoughts in case they might be helpful.

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