PALB2 mutation

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Gigi-1
Gigi-1 Member Posts: 4
edited November 2019 in Genetic Testing

Hi everyone. Just discovered I tested positive for the PALB2 mutation and was wondering how many others in the group have tested positive for this mutation and did it play a part in your treatment. Just had double mascetomy 1/22/19 and waiting to meet with the medical oncologist 2/27/19.TIA

Dx: 11/2018, IDC Left, 2.5cm stage 1 grade 2 0/3 nodes, ER+/PR+/, HER2 -

SX: 1/2019 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement

T2, No, Mo

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  • Desirr77
    Desirr77 Member Posts: 31
    edited February 2019

    I tested positive for the palb2 mutation, I am from Germany. In Germany, a palb2 mutation does not play a part in treatment, but I paid my double mastectomy myself.

    DX 2/2016 triple negative, 0,6cm G3 0/1 nodes

  • marciajo63
    marciajo63 Member Posts: 1
    edited November 2019

    I am in Oregon. I tested positive for PALB2, but do not want the mastectomy. I decided on chemo, radiation and tamoxifen. I am almost done with chemo and am currently negotiating with my doc about only having the one little lump left removed, rather than the entire breast. I understand that this position is not usual. Most high risk women choose the double mastectomy, and I respect their choice.

    It is weird having such an unusual diagnosis, for sure.

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

    marciajo63, we welcome you to our community, and thank you for sharing your experiences. Indeed, each person has to find their own treatment path. It sounds like you're supported by the treatment team.

    Glad you found us here

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