Decisions....

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MabelJo
MabelJo Member Posts: 25
edited October 2016 in High Risk for Breast Cancer

I am high risk after, almost on my 39th birthday, I had an abnormal mammogram/US/biopsy, then finally excisional (which came back ADH).

Am not a carrier, but most of the women on my dads side of the family, including cousins of mine, have all had bc of some sort. Most recently, my closest in age cousin was diagnosed. She is 42. I am the youngest of us girls. Surprisingly, nothing on my moms side.

I am also recently married for the first time. No kids but we discussed it, especially with my age, of it happening sooner rather than later. However, this was before everything.

At my first 6 month check up, I was asked if I was planning to have kids and if not that I should consider a hysterectomy, as well as possibly preventitive masectomy. Yes, am that high risk apparently.

Has anyone come across this decision? I have never been one to desperately want kids, but I do think of my husband and what I might be robbing him of. But I also don't want the chance he becomes a single dad, or worse, I watch her go thru this as well (which I know is killing my mother).

I know there are no certainties in life, but am being selfish to want to take steps in prolonging my life over bringing in a new one? And how do I deal with telling my husband all this?

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  • Wicked
    Wicked Member Posts: 141
    edited September 2016

    Did they find anything besides ADH? Maybe someone else can chime in here- ADH is NOT cancer, it's just an indicator of a heightened risk of it. Why are they considering yours to be risky enough for a prophylactic BMX? Is it your family history that they're worried about? There are many women here with ADH and they not only don't have a BMX, it was never even suggested to them. Wondering why you are getting different information.

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  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited September 2016

    Sooo, I'm confused. You say you are not a carrier....of what, may I ask? Did you have some genetic testing, and if so, what did they test for? A lot of people think of the BRCA genes as being THE ONES. And they are the more common of the known gene mutations, but they are not the only ones.

    I had two different genetic tests done. The first one included the BRCAs and 3 other genes. Then, due to my extensive family history of colon, lung, breast, and pancreatic cancers, I was offered another test that included the BRCAs, but also tested about 15 other genes. My first test came back BRCA-negative and I really thought that was IT. We celebrated! But then, 3 weeks later we got the results on the other test and found out that I have 2 much more rare gene mutations, both of which are high risk for breast cancer (and other cancers.) So, that pretty much changed my world.

    I do understand your feelings about passing this on. After my genetic testing came back, my adult children decided that they wanted to be tested as well. my 30yr old DS came back negative for both; my 23yr old DD came back positive for both, which makes me sadder than sad. I don't feel guilty, exactly, because I didn't knowingly do this to her. But I feel terribly sad that she has to know this and deal with this at age 23. But since I have an aunt who had BC at age 24, it's better to know than not know (and I can't believe that NONE of my doctors ever even questioned me about this!) DD saw my breast surgeon and now she will be on breast surveillance every 6 months for the rest of her life. The only bright spot is that my DD will have much closer scrutiny than I did. Perhaps if I had known about these gene mutations two years ago (and my risk was 45%+) I could have had preventative surgeries and not had to go through chemo. Hopefully, my DD will never have to go through what I've been through.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2016

    Like Wicked, I am also confused as to why they are recommending a prophylactic hysterectomy and mastectomies, if you only have ADH and are BRCA negative (assuming that is what you meant by "not a carrier"). those are surgeries that they often recommend if you are BRCA positive. (because of the elevated risk of bc and oc). IF you only have ADH and are BRCA negative, they usually would just recommend closer monitoring and possibly (but not necessarily) preventative meds (such as tamoxifen), especially if you have family history of bc.


    anne

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  • flymoon
    flymoon Member Posts: 3
    edited October 2016

    Sorry you are going through this. I can't help much, but have y considered freezing yr eggs to use them in future? A friend of mine froze hers in Gdansk in vitro clinic, cos it is cheaper. Although she has done it cos of her career plans. Nowadays national and overseas fertility clinics offer various forms of infertility treatment. I would recommend that you do yr research on opportunities you have if you decide to undergo hysterectomy. Good luck with yr search!

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