BRCA1 POSITIVE AT 28

Hello all,

I have recently found out that I am BRCA1 positive. I lost my mum to triple negative breast cancer at the age of 58 and although she was never tested I was recommended to get the test done myself as one of my mum's cousins is BRCA1 positive and had breast cancer twice in her early 30's. 

I am currently waiting to be referred to the relevant clinics for further discussion but during the wait for my genetic testing results I had already come to a pretty strong conclusion that if it turned out that I was positive then I would want a double mastectomy as soon as possible. After seeing what my mum went through I want to avoid that if possible.

After reading through forums and people's experiences it seems as though many people opt for reconstruction. I will admit I barely have a chest to begin with and due to the fact that I have been going through a considerable amount of anxiety I am not at all fussed about having a reconstruction. I just want these ticking time bombs off!

I am curious to know if there is anyone out there who has had a double mastectomy but opted not to have a reconstruction. How long was the operation? is scarring very obvious? any kind of information really! 

I feel very lost and alone right now. My family are trying to be there for me but ultimately cannot relate to what I am going through. Having already lost my mum to this disease it brings along an entire range of emotions on top of coming to terms with my own diagnosis with this gene mutation.

Any advice or thoughts would be greatly appreciated. 

  • Hi  I don't have BRCA1 and I didn't have a mastectomy but as no one has responded to you get I will give you my opinion.  My replying will also bump you back to the top of the list where someone who can help might see it this time.

    I would draw up a list of pros and cons to having reconstruction vs not having it to help you decide.  I would also think about how you think you might feel about whatever decision you make 5 years from now.  I assume you can choose not to have immediate reconstruction and then at some point in the future if you change your mind you can opt to have the reconstruction?

    The scars will be visible but it will be different from person to person.  Ask your surgeon to show you some pictures.  I think Cosmopolitan did an online post where women who had had mastectomies were celebrating their scars.

    Personally I would probably have the reconstruction because why not if it's an option, unless it increases the risk of breast cancer in the future in which case I wouldn't.

    Hopefully some ladies who have had mastectomies will see this and also reply to you.

    Wishing you all the best with your decision.

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