Have you done prophylactic ooph/hys?

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jeb1959
jeb1959 Member Posts: 12
edited June 2014 in High Risk for Breast Cancer

I am scheduled to have hysterectomy/ooph in a week.  Am 54 yrs old and four year survivor of highly ER+ breast cancer. Mother a survivor of ER negative BC, paternal grandmother died at 56 of ovarian cancer.  Many other cancers throughout aunts and uncles and in my family though I am not BRCA positive.  Have been on Tamoxifen for 3.5 yrs and had three D and C's in that time.  Need another and Dr recommending hysterectomy at this point due to trouble successfully completing D and C (stenotic cervic, misshapen uterus). Suggesting ooph too since I've been in menopause for four years.  Has anyone else gone this route and had the hys/ooph though not BRCA+ and really more of a preventative measure? Thanks for any insight!

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  • cp418
    cp418 Member Posts: 7,079
    edited February 2014

    I was dx age 49 premenopause HIGHLY ER+ PR+ 100%. After chemo and during radiation I felt like my hormones were trying to turn my periods back on.  I also had a hard time on Tamoxifen for several months I tried it.  Family hx of strokes, uterine fibroids, kidney cancer, colon cancer, one aunt with breast cancer, prostate cancer and leukemia.  I argued with my Onc to have ooph done and said I would find an Gyn who would do it.  Finally got his support and had it done allowing me to take Femara.  No regrets, although I realize this decision is not for everyone I felt it was right for me.  I always had extreme hormone problems with painful lumpy PMS breasts, long heavy periods and endometriosis.  After the breast cancer dx, I'd had enough already....

     

    (BRCA neg too)

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  • lemon68
    lemon68 Member Posts: 684
    edited February 2014

    My DX is below, I had already had a uterine ablation to stop my horribly long, heavy periods before my cancer DX. I also had endometriosis back in my 20s and 30s. I didn't feel good about taking the tamoxifen but I did try for a short time. Due to my hormones being so high my oncologist recommended to remove the ovaries instead of taking the drugs.

    Turned out that I had 2 huge cysts and ended up with a total hysterectomy back in Sept. I am not sure it was the right thing or the wrong thing but for me I know my estrogen is no longer raging. The menopause symptoms are horrible, night sweats, hot flashes, sex will never be the same but I do think I have lowered my risk. All the decisions are so hard to make, I try to make them and move forward and not look back. I was 44 at time of ooph. I take no drugs which makes me happy.

    Good luck to you

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  • jeb1959
    jeb1959 Member Posts: 12
    edited February 2014

    You are so right...the decisions are very difficult to make. I am hoping that because I have been in menopause for four years that the menopausal symptoms post ooph will not be any worse than they have been.  My Dr assures me it won't be that different so I am hopeful he's right. I plan to keep the cervix for a few different reasons and also since my Pap tests have been fine over the years. I will still be on the Tamoxifen...wish the ooph enabled me to go off but that does not appear to be the case for me. Hoping I make a swift recovery...I am not great at sitting around!  :)  Thank you for your messages.

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  • 2timer
    2timer Member Posts: 590
    edited February 2014

    I just finished chemotherapy for stage 2 bc and will be continuing my treatment later this month on Arimidex.  I'm perimenopausal I think even though I haven't had a period in several months.  I told my Onc flat out that I didn't want my ovaries out.  So I'm getting zoladex or whatever it's called to shut them down.  I had a bilateral in August with immediate diep flap reconstruction.  

    I'm tired right now and just not ready to do something as drastic as oopherectomy.  My cancer is 100% Er, just like the DCIS I had 7 years ago.  Tamoxifen didn't work for me; I took if for 5 years and developed an invasive bc while on it so that's out.  I have to take aromatose inhibiters or whatever.  So I'm  having my ovaries shut down chemically.  It's really a damned if you do, damned if you don't situation since, I'll go into menopause anyway with all the symptoms.  I am just not mentally ready to do this surgery; breasts were one thing, my ovaries are another.  Plus I need to do some other things like lose weight, to bring my estrogen levels down.  

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  • alicki
    alicki Member Posts: 661
    edited February 2014

    Hello, 

    Had a partial hysterectomy at 38 (due to bleeding), and will have ovaries taken out at 45. Meanwhile, I had a breast reduction (at 40)

    and am seriously thinking of a mascetomy both sides (in fact would have gone for mascetomy had I known that I have B9 but weird breast conditions). I want to travel the world and teach and not be bothered every six month with check ups! And no reconstruction, a padded bra will do.

    Am seeing surgeon in London in a month and will decide then

    Alicki

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