Is there a type which is 100% not hereditary?..

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  • Papillon1
    Papillon1 Member Posts: 308
    edited March 2014

    hoping the chemo does its job Alex. My mums seems stable ish now. But the cancer in her liver is slowly growing. And we don't know what's happening in her brain, they don't scan there often at all. The liver is her biggest problem we are told. Terrifying. It made her anorexic, so awful to see such a physical change. 

    Good luck all x

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  • DiveCat
    DiveCat Member Posts: 968
    edited March 2014

    Papillon,

    People are all different. Even among BRCA+ women, uptake in the US for PBMX is about 1/3. So, the majority opt out. Many women on FORCE for example choose surveillance for their breasts. It is an individual decision that has more than generational influences at play. My mother had her MX/PMX during treatment in her late 40s..8 years ago... and had (has) a hard time with it...she never pursued PBMX and even now is not sure she would choose differently. Her boobs do not "define" her but their loss was still hard for her. There are physical and sexual losses, ongoing pain issues, a sense they are not "hers" (despite being her own tissue), change to what she knew as her body. My breasts certainly do not define me either (yikes, I should hope no woman chalks who she is up to her breasts!) but they ARE a part of me, so I can understand that it might not be a the path taken for women of all ages. I do not like idea that women choose not to do this as their breasts "define" them...that is simplistic and I don't really think that IS the case for most if not all.

    As for partners...my husband is incredibly supportive. He gets a bit teary thinking about me going through all that, though has been beside me since Day One and always willing to listen and ask questions. He understands my reasons and need to do this, and while he would never tell me WHAT to do, he has told me he is relieved that I am reducing my risk...he wants me around, and healthy, for a long time, too!

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  • Papillon1
    Papillon1 Member Posts: 308
    edited March 2014

    what I mean is I can do without them. My mum had said she would have felt less of a woman without them. I don't think I will.

    I do not feel they necessarily make me a woman. They don't make me me.bIt is in that sense that I used the word define. 

    They help mum feel like a woman.  Of course there is so much more to her than boobs.  But sexual relationships have changed over the years. The view of women has changed, maybe that's it, who knows.

    I didn't use the word to offend or start a debate about it. I honestly don't have the strength right now.

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  • Papillon1
    Papillon1 Member Posts: 308
    edited March 2014

    hi Alex, thanks for asking. She is ok. Most body mets are stable, he the chemo doing its job. But the liver ones are growing, but slowly. And as for the. Brain we don't know, they on cd can often due to side effects of the scan but there are no noticeable new symptoms recently. Considering she is 14 months post diagnosis I would say she is doing good. She just started steroids and its great, making her finally eat a little and generally sounding perkier. I only see her once a month but am flying home tomorrow to see her. Yippee :)

    Hoping your mum had a good day xx

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  • lekker
    lekker Member Posts: 594
    edited March 2014

    Papillon - I tried to read through the whole thread but I might've missed something.  You said that you met with several doctors - did you ever have a pedigree done by a genetic counselor?  Oncologists don't always know a lot about genetics (according to my second opinion onc who's an MD/PhD in microbiology).  Have you told any of the doctors about your paternal family history?  There is an online BRCA risk calculator that will take into account both sides of your family history here http://www.afcri.upenn.edu/itacc/penn2/  

    The comment that your mother's breast cancer cannot be hereditary was painfully ignorant.  Most medical professionals used to believe that breast cancer was never hereditary - until Mary Claire King and her team discovered BRCA1. As others have mentioned, there are several other known genetic mutations with links to breast cancer.  I've been tested for almost all of them and not because of a strong family history of breast cancer, rather because of a personal history of multiple cancers that both presented at a young age (two indicators of a possible genetic basis for the cancers). When I went through the testing process, my genetic counselor first ordered BRCA testing but only for the three founder mutations most commonly found in the Ashkenazi Jewish population (my dad's side). When those results came in, my GC said "congratulations - you're negative". I insisted on the full BRCA sequencing plus BART and she approved.  When that came back negative, I met with a geneticist (MD) who examined me for external signs of other genetic syndromes (several have things like large skulls, freckles on the lips and gums, and other unusual traits).  She didn't find anything.  I asked for the Broca panel from the University of Washington (developed by Mary Claire King) and it was approved.  It also came back negative - I didn't have a single mutation in any of the 40 genes.  So I am another uninformed negative.  I feel like I either have an as-yet undiscovered mutation, or I was exposed to some environmental toxin that didn't hurt my brother or my parents, or I just have terrible luck.  I already did the most aggressive surgeries (BMX and hyst/ooph).  I go for annual skin checks and have frequent colonoscopies so I am being proactive where I can.  Some people might wonder if it really matters if there's a genetic basis since I've already done all I can do.  When people ask me that, I show them pictures of my little girls.  My greatest hope is that I eventually find a mutation that caused this for me - then my daughters can choose to test for it and we can all celebrate when they get a true negative.  Because if that doesn't happen, they will have to start colonoscopies at 20 and breast screening in their early thirties, and I'd like to spare them that. 

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  • Papillon1
    Papillon1 Member Posts: 308
    edited March 2014

    thanks, yes I saw a genetic counselor. Well, a team of people from the genetic oncology unit. Doctors and a counselor. Thanks. 

    You are amazingly proactive, understandably so, but still amazing. I so feel we must take our health and decisions into our own hands. The doctors talk in statistics. I am not a statistic. I am me. A daughter, a wife, a mum, an individual who wants to stay that way.

    Good luck to you and your babies lekker.

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