PALB2 gene mutation

Stacebur
Stacebur Member Posts: 1
edited September 2017 in ILC (Invasive Lobular Carcinoma)

My genetic tests came back positive for PALB2 which has changed my treatment plan from lumpectomy with radiation to bilateral mastectomy, prophylactic hysterectomy and Chemo. Anyone else with PALB2

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  • Moderators
    Moderators Member Posts: 25,912
    edited March 2017

    Dear Stacebur,

    Welcome to the community. We are sorry about your diagnosis but glad that you reached out to our members. While you are waiting for some responses you might want to check out this information on our website about Abnormal Genes. Please stay connected here and keep us posted. the Mods

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  • Nbk4y8f
    Nbk4y8f Member Posts: 1
    edited July 2017

    I was diagnosed with the PAlB2 gene in November 2016 after my mom had genetic testing. She was diagnosed with bilateral cancer in July 2016. She had a double mastectomy and several rounds of chemo and waiting to do her reconstruction surgery. I am in the process of schedule a double mastectomy at the suggestion of the oncologist. I am very nervous about the thought of the surgery, but I want to make the best decision for my future and my family.


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  • Makratz
    Makratz Member Posts: 12,678
    edited July 2017

    I am PALB2 positive.  I had breast cancer in 2008 at the age of 42. My genetic testing from 2009 was negative.  In the last year several family members had breast cancer, were tested genetically, and are PALB2 positive.  I retested and was positive.  My sister is also.  I don't know what to do.  My heart breaks for al of the ladies who are positive and have never had breast cancer.  The decisions you must have to face are incredibly difficult.  My concern for myself is recurrence.  Onc says I should have double mastectomy and ovary/tubes out.  I don't know what to do!

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  • hartrish
    hartrish Member Posts: 380
    edited August 2017

    I tested positive for PALB2 as well. My mom and sister tested positive. Thankfully my daughter tested negative

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  • Lovinggrouches
    Lovinggrouches Member Posts: 530
    edited August 2017

    Did all of your family members test for the same exact variant? Was any of you or your families results variants of unknown significance (VUS)?

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  • Makratz
    Makratz Member Posts: 12,678
    edited September 2017

    Yes several family members tested for the exact same variant.  An aunt in her 80's, Uncle in his 80's, my sister 55, me 50, cousins, 54, 52.  Others are being tested now.

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