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Kiki's avatar
Kiki
Member
11 years ago

BRCA1

I am 46 and have just found out that I have the BRAC1 gene mutation. I was not surprised as my first cousin (from my dad's side) also has the gene mutation.

I am currenly  having chemotherapy treatment for early breast cancer (triple negative).

I feel like I am a ticking bomb...that it is just a matter of time that I will get ovarian cancer and breast cancer again. I feel that I need to do all I can to significantly reduce my risk of developing cancer again.

I have been told by the oncologist in the genetics department that removing the ovaries will half the risk of getting another breast cancer (although i would still be at a higher risk than the average woman), but halving that risk sounds pretty great!!I am also considering double mastectomy. Have not yet had any discussions with my own medical team.vInterested to know what advice/recommendations others have recieved from their medical team.

My family are most supportive of removing the ovaries, but somehat hesitant about the breasts, I guess that is becuase there is a visual impact.

My husband is fully supportive of both ovarian and breast surgery...lots of decisions ahead.

BRCA1-BRCA2
chemotherapy
triple-negative-breast-cancer

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  • cminv7's avatar
    cminv7
    Member
    11 years ago

    I too am 46 - I am sorry that you are in the same situation.  A lot to think about! 

    I had my cancer and single mastectomy 12 years ago and both ovaries removed 4 years ago, along with total hysterectomy.  To be honest I miss my ovaries more than my breast.  My libido is zero which is disappointing.  I have joint problems which are exacerbated by not having any oestrogen in my system.  I feel old before my time.  On the plus side, I don't have to have those awful transvaginal ultrasounds any more, which I was having as surveillance screening due to my BRCA1 status.  Also my breast tissue is being "fat replaced" - this means reduced risk of breast cancer and if I do get cancer it will be easy to see on the mammogram.  I do think my anxiety about recurrence has lessened since my ovaries were removed.

    I am glad to have kept my other breast - it is my only 'girly' part left!  However I am considering having it removed.  As my surgeon reminded me I will need annual mammograms for another 24 years!  It's nearly worth it to avoid these annual checkups which I still find confronting. 

    I sometimes feel 'ripped off' having this BRCA1 mutation.  However, I am sure that knowing about it has saved my life.  I had genetic testing at 31 and without that I wouldn't have had that mammogram which found my cancer at 34, when I thought I was too young to have to worry about that yet.

    I wish you well in your treatment.  These decisions are hard ones, but remember it's YOUR body.  Only you can decide the level of risk you're happy to live with vs which body parts you can live without.  Ask advice, but listen to your heart.