Side Effects from Oophorectomy--almost Menopausal

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tracker
tracker Member Posts: 7
edited June 2014 in Genetic Testing

I was diagnosed with BC in 2002 and had a mastectomy. No chemo, no radiation, ER+, PR-, Her2-, no lymph node involvement other than the first 2 or 3. I have a mutation of unknown significance on the BRCA1 gene. I was on Tamoxifen for 5 years. Family history: my maternal aunt had BC at 42 and 67, and lung cancer at 46 or so. She's alive and well. My maternal grandmother had BC and died ca 15 years later, either of a metastasis to the liver or liver cancer. My mother has colon cancer currently. There are some colon cancers in the maternal great grand parents generation. I'm 51 and are having periods at most every 3 to 4 months, and have had night sweats on a semi regular basis for a year now. 

My obgyn has been telling me for two years now to have an oophorectomy. She's very involved with breast cancer and genetic research, and especially since I have a mutation, albeit of unknown significance, she's pushing me. She never laid out what the side effects might be, she just seems to feel they're no big deal. I've so far said no way, not until I'm at least naturally menopausal. So I started looking for some info on side effects on my own. It seems that I'm a good candidate for removed ovaries, what with the family history and my own cancer, and the mutation (my mother never had BC nor does she have any mutations). But the idea of cardiovascular problems, osteoporosis, serious problems with libido paired my not being able to do HRT really concerns me, too, especially the libido bit. It's already slowed down as it is, and the idea of it going down a lot more is hard to handle. I know nobody can make this decision for me. But I'm still interested to hear some thoughts.

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  • Moderators
    Moderators Member Posts: 25,912
    edited April 2012

    Hello tracker, and welcome to BCO.

    We expect you'll hear from members with support and information from their own experiences. In the meantime, there are several articles and Research News reports about oophorectomy on the main Breastcancer.org site that may help you.

  • Momine
    Momine Member Posts: 7,859
    edited April 2012

    Hi there. I just had my ovaries out 4 weeks ago. I am 48 and I was not otherwise menopausal. The ooph came after 6 months of chemopause and last week I started femara, which the doc described as putting you into "deep" menopause.

    So far, knock wood, it has really not been all that bad. I do get the occasional hot flash and I had a bad night sweat once, but otherwise no real repercussions. This may get worse, obviously, as the SEs from the femara kick in for real.

    My mom and aunt do not test + for BRCA, but they have both had gyno cancers. Given that family history, my BC and my cancer's ER+ status, we decided an ooph was a good idea. Ovarian cancer is a sneaky bugger, and I really prefer not having that to worry about on top of everything else. 

    How did you escape both chemo and rads when you had lymph involvement? Was you cancer lobular or ductal?

  • tracker
    tracker Member Posts: 7
    edited April 2012

    I escaped radiation because once they finally got clean margins, the breast was gone anyways. The doctors agreed I had DCIS AND "multi-focal" invasive cancer (of sizes between 5 and 7mm), but nobody could agree whether this was lobular, tubular of whatever--it's been 10 years, thank God, and some of these details are fading). Also, when they did this "how fast do the cancer cells divide" test, turns out my cancer was so sluggish it was barely moving. My oncologist did the statistical game and figured chemo was overkill (oddly, both the breast surgeon and the oncologist said I had no node involvement, but on the sentinel report it said 2-3). Turns out, so far, she was right.

  • 3monstmama
    3monstmama Member Posts: 1,447
    edited April 2012

    I had an ooph in December--my breast surgeon and oncologist both gave me two thumbs up for the decision.  For me the final push was my mother's diagnosis of advanced stage IV ovarian cancer just before thanksgiving.

    I was already in menopause before the surgery--likely kicked in by my hysterectomy in 2005.  I have noticed some hot flashs but nothing murderous.  I have had the libido issues but that was greatly helped by an estring and I suspect just time and learning to deal better with stress.

    I have no idea if I am carrying any gene mutations.  To be honest, I've been too scared to look.

  • learnin
    learnin Member Posts: 205
    edited April 2012

    Tracker - At 51 years old, aren't you going to be having menopause with all it's changes anyway soon? Hitting menopause a bit more suddenly sounds like a worthy trade off. Ovarian cancer is so sneaky and so often fatal. I would do the ooph in a heartbeat. (actually, I did).

  • dressager
    dressager Member Posts: 77
    edited April 2012

    hi tracker. i had hyst and bilat ooph last month and i wasn't menopausal before surgery. i've had an easy time of it---i did immediately have some hot flashes but they are VERY mild--no trouble sleeping or any of that. i will say that i'm much more impatient than i was before i surgery--the filters don't work quite as well, if you know what i mean.

    my gyn told me that i'm a very unsual case for her. she said that most of her patients who have had this surgery before menopause have a real tough time of it. they come in to see her, having not slept for days, raging about this and that, etc.

    in the end, it's worth it. i would have had this surgery, even without the ovarian mass that started that mess. good luck with your decision.

  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited April 2012

    There is a site called hystersisters.com that is very informatioal about side effects from ooph/hysterectomy.

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