Prophylactic Mastectomy before any diagnosis?

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danlias
danlias Member Posts: 28
edited June 2014 in Caring for Someone with Breast cancer

Hello....I have been having a hard time dealing with my mom's breast cancer lately, and after a lot of research, I have seriously been considering having both breasts removed. Both grandmothers, my mom's sister and now my mom have been diagnosed.  My mom had BRCA testing and it came back negative.  I know this won't make my chance of not getting breast cancer 100%, but at age 40, it's starting to seem like a smart idea.  I had a clean mammogram at age 35.  Are there any other daughters, sisters or family members thinking about this?  Anybody have this done? 

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  • Papillon1
    Papillon1 Member Posts: 308
    edited April 2013

    Speak to a genetic oncologist. There are other test besides the BRAC that could be done

    I know how you feel though, it s scary...I kind of want to just get rid of them too..

    I am seeing the genetic oncologist, have had a first consultation about family history no they are now doing more research into my family and the specifics of their cancers before we have another consultation. A interested to hear what they say but really do want to do something other than just hope for the best...but I will take their advice.

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  • Papillon1
    Papillon1 Member Posts: 308
    edited October 2013


    hi, how did you get on thinking about this? I am still very keen on surgery. Despite the genetic people not wanting to test me (mums cancer was age 52...apparently later than most hereditary) and suggesting I am of moderate risk.


    For me I think it would give me massive peace of mind to have them removed. Moderate risk is too much for me. I have three kids. I want to see them have their own babies. I want to be an old lady. my mum will be 66 next week. i wasnt sure she would even make it this far, h acncer is spread and he treatments so harsh.


    her mum also died in her 60s.


    It has been suggested I could talk with a doctor to discuss my fear of cancer..but I don't see what difference being mentally positive would make to my odds.. I could be positive and hopeful for the next 20 years and still get cancer. Fr me, with seeing my mum struggle now, and knowing her mum died the same way, prevention is better than cure. Especially as there is no cure for cancer.


    Having a mamogram next month and may use that as a first step to discuss my thoughts with the doctors..

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  • geysermom
    geysermom Member Posts: 133
    edited November 2013

    I had prophylactic mastectomy before any diagnosis except recurrent atypical ductal hyperplasia and a history of breast cancer in my family.  By the time I made my decision, I had already had several biopsies and a lumpectomy.  My decision was made after my every 6 month mammo lead the doctors to recommend that I have core needle biopsies of 7 different areas.  The surgeon did a breast MRI prior to recommending double mastectomy and it showed at least 11 highly suspicious areas.  With that information my insurance company approved the surgery and reconstruction.

    I didn't go the genetic testing route because I didn't want to be denied insurance afterwards because of the results.

    This is not a decision to make without significant thought, however.  My complicated recovery despite excellent health took a full 3 years until I was 100% feeling like myself again.

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  • Papillon1
    Papillon1 Member Posts: 308
    edited February 2014

    met with an experienced surgeon yesterday who would be prepared to do the he op. He understood my reasoning and said he has regularly carried out double mastectomies on women who have had cancer in one breast, even though the double wasnt necessary but they wanted it. He said they and less chance of cancer in the "clear" breast than I have been given (1 in 4) but for their own reasons chose a double mastectomy. So in that sense he has no issue with performing surgery for a 1 in 4 chance of breastcancer, that has a history of being fatal in my family. We discussed all other options but I am still set on surgery. 

    Here in Switzerland a prophylactic mastectomy without brca is pretty much unheard of. I was described as radical. But I am happy to have found a doctor very involved in research  and who is happy to be radical.

    I don't feel radical. I feel sensible. To me it seems an easy choice. Not sure if I am missing something...

    Will chat with another surgeon to get other opinions before going a head. I am not rushing into this and want to make sure no one can ever think I did.

    Am still asking for mum to get the brca test since if she is positive (slim chance) then I could be clear if tested..,but it's a very slim chance. So slim I suspect no one will test her.

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