I have a strong family history on both sides of family.
On my Dads side is the BRAC1 gene and 3 of his sisters and at least 2 cousins have died because of it as well as my grandmother. ..likely...but she refused treatment /investigation so was just treated for pain. All these in Scotland. I was tested for this gene and was delighted to fibd out I didn't have it.
My half sister though had breast cancer and so has her daughter. They have tested against all known genes and have been unable to find a known gene thus far.
So at this time we are considered just an unlucky 1 in 8. Since I am 1 sister of 7 I guess it's not surprising really. However they keep looking and all my sister's have annual mammograms.
I had a bilateral mastectomy as we all thought I had the gene. My breasts were very dense and my tumor was invisible on the mammogram 5 weeks before the palpable lump. I wanted immediate reconstruction and my surgeon recommended it and I agreed (having 1 Aunt die after having bilateral breast cancer but different times ).
I was all set for referral to next surgeon to he rid of girly bits but not having the typical gene for ovarian cancer I have not proceeded with this surgery. A relief not to need it but something I would have done if my genes were identified.
So I had the bilateral mastectomy and have no known gene. Do I regret this. Absolutely not. Would I do it again given same choices...yes. Do I miss my breasts...yes I do...but I've adapted. The surgery has enabled me to stop worrying about a new primary hidden cancer or recurrence in similar area. Not 100% of course but a dramatic reduction. That peace of mind was worth it.
