TNBC and Oncologist is pushing hysterectomy - need advice!

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Alicia-Rae
Alicia-Rae Member Posts: 31

Hello everyone, 

I am 27 years old, was diagnosed at 23 with TNBC and have been tested for the BRAC genes, I am negative in both but have a mutation in the BRAC 1 gene that they don't know what it is. I have two children already, my youngest is 13 months old, and have been having some irregular bleeding in between periods lately coupled with pain. The OB has said he believes it to be endometriosis and would like to shut down my ovaries for a while, but has then suggested after that if I want to get pregnant to do it quickly and have a hysterectomy and my Oncologist has been pushing this since I got pregnant with my last child. I am pretty sure I am done with having children but I am worried and wondering if anyone has any advice or information about what I should do. Is this necessary? I am confused please help! 

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  • anamerty
    anamerty Member Posts: 195
    edited May 2013

    So sad to hear you have tnbc and your young age..I have no idea what being neg. in the brca genes but having some mutation means. I was tested for it 6 years ago, thats 8 years after I was dx with my first breast cancer which was er/pr positive. I had a sister who had been dx with bc at that time but British Columbia didn't want to test her as she was post memopause at time of dx.I was post menopause also but my first bc I was premenopause so they thought that it was best to test me. I also had a sister who was 31 years old when she was dx with bc ,and passed away at age 33 in 1994 from it. So it was very suspect that 3 of us had breast cancer. Anyways I got tested and was positive for BRCA1, then all my family members were tested with the exception of 3 of my nieces we all carry the gene. I have 3 daughters and a son, all 3 of my daughters had bilateral preventative mastectomies 6 years ago and I had the ovarectomy done same time.My daughters are in their 30's have had all their kids, and all are booked to have their ovaries removed. One is going in end of May, one in beginning of June, and the other is pregnant with baby #4 but after Aug. when she has the baby she too is having her ovaries removed.They have all had genetic councelling and are aware that they will go into menopause, but they all will be put on a HRT, which according to the councellor at the BCCA genetic clinic in Vancouver, they say it is safe to do the HRT's.All of my daughters are starting to look a bit premenopausal now and they figured that because early menopause is in our family, they may as well do it now and have faith that they are pretty safe from getting ovarian cancer.But they did struggle with their decision. I was dx with tnbc again in opposite breast last Aug(new primary)That is why they want to do it now.Seeing me 2x with breast cancer was enough. The decision is yours though, but if you are finished with having more children, you most likely do carry the BRCA1 gene and have had tnbc, it is something you need to really think about. BTW TN is more common in BRCA carriers,and you have a very increased risk of ovarian cancer,so its your call.I wasn't using mine so I didn't have a problem losing them, but you are so young.Have you contacted the breast and ovarian genetics at the cancer agency? That should be a great place to start. Good luck with whatever you decide.Brenda

  • Luah
    Luah Member Posts: 1,541
    edited May 2013

    I strongly recommend genetics counselling; they should be able to help determine your overall risks of both BC and OC, then you can make an informed decision... whether it is surgical or enhanced screening... and/or what mitigating action you can take. There are so many implications for a young woman like you - you need the genetics experts to walk you through it. I wish you all the best.   

  • Alicia-Rae
    Alicia-Rae Member Posts: 31
    edited May 2013

    Thanks ladies, there has been a lot going on recently. I got an appt for a second opinion on the hysterectomy surgery in two weeks. They are also going to go over my genetics information and see if there is any news on that front. I'm nervous because i feel like any choice I make I won't be a hundred percent comfortable with

  • Luah
    Luah Member Posts: 1,541
    edited May 2013

    I think as you acquire more information, your path will become clearer. And while you may never be 100% comfortable or certain, you will lean towards what's right for you. My very wise BS once said, "you make the best decision you can, with the best information you have, at the time."

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