Oophorectomy regrets or issues?

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Staceybee
Staceybee Member Posts: 72
edited January 2020 in Surgery - Before, During, and After

I would appreciate any perspectives from anyone that has had their ovaries removed -- any regrets or issues that you could share?

My gynecologist has been recommending for the last year that I have mine removed -- and I should finally make the decision. While I did not test positive for BRCA or any other known gene mutations, the gynecologist's reasoning for taking mine out and taking the risk off the table is 1) I had ILC which has a higher tendency to metastasize in the ovaries than IDC, 2) I had some nodal involvement, 3) my paternal aunt died of ovarian cancer in her 50s and my paternal grandmother may have as well (it was long ago and she had rudimentary care so they don't know for sure the exact source of her cancer), and 4) I am getting monthly ovarian suppression (OS) shots anyway.

For anyone that was getting ovarian suppression, was there any change in menopausal symptoms, ie, worse, after the oophorectomy?

Thanks in advance for any perspectives/advice!



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  • SimoneRC
    SimoneRC Member Posts: 419
    edited January 2020

    Hi Staceybee!

    I was diagnosed with IDC at age 51. At age 50 I stopped taking birth control to test to see my menopausal status. To everyone’s surprise, I was fully menopausal. Started hormone replacement therapy right away.

    Obviously when I was diagnosed with ER, PR + IDC I stopped HRT, and began AI. Just over 1 year later I had ovaries, tubes, uterus and cervix removed. For me, I have not had any additional issues, more than from stopping HRT and going on AI. My Total Hysterectomy and BSO was April 30, so it has been 8 months.

    I exercise pretty vigorously, hydrate and have always used a sleep aid.

    Good luck and keep us posted!


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  • BevJen
    BevJen Member Posts: 2,523
    edited January 2020

    Hi, Stacybee,

    As a fellow ILC person, I would say go with what your gynecologist is telling you to do. I was originally diagnosed in 2003 (premenopausal) and so after my initial mastectomies and reconstruction, chemo, and radiation, I went on tamoxifen (so now we're in 2004). In 2006, I was diagnosed with mets to a polyp on my cervix (strange but true) and was sent to a gynecological oncologist. He suggested getting everything out. I did. There was no evidence of cancer in anything else, but I felt like I had dodged a bullet at that time.

    ILC is sneaky and can show up in weird places, so I wouldn't mess around.

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  • Brilee76
    Brilee76 Member Posts: 227
    edited January 2020

    Following along with ya Staceybee. I'm scheduled to have my laparoscopic surgery on the 20th of this month! I have my pre-op with my gynecologist this Thursday so I'll know more about exactly what to expect and whether she plans to remove my cervix as well.

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited January 2020

    I had one in mid fifties. I would not do it again. Mama needs what little estrogen she has. Now re:the hysterectomy? Should have done it years ago. It is thought that most ovarian cancer starts in the tubes and some have just those removed.

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  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited January 2020

    I had Hyst/Ooph at age 50. SX was easy, no problems. I have no regrets other than not being aware of the bone loss that the lack of Estrogen caused. I now have Osteoporosis. My Gyn put me on HRT patch immediately, as in when I was out of SX, it was on me. I broke out in a terrible rash...took BC pills for a month or two and decided that was not a good idea. I had very few hot flashes, some vaginal dryness and atrophy, but all in all, it was worth it to me. I was peri-meno at the time anyway. You can always get a second opinion! It's a big decision. Best wishes.

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  • jco1
    jco1 Member Posts: 2
    edited January 2020

    Hi. i was also advised to have my ovaries removed due to the connection with breast cancer, following a mastectomy. I was unsure but really wanted to know that i could eliminate this awful disease for the future. It enforced the menopause but its been fine, as i guess i would have been heading there anyway. the peace of mind is amazing to have afterwards. I had complications as they did it by 'keyhole' surgery and trapped my bowel as they were closing up. this caused me to have a bowel repair. which failed. and then a bowel resection. i was just unlucky tho. the actual removal of the ovaries was a good decision.

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  • Pif
    Pif Member Posts: 4
    edited January 2020

    Hi, I had my ovaries removed with my IDS 12 years ago and it didn't seem to affect me at all and was very easy recovery (a day or 2). I've been very glad that I had them removed and am now dealing with ILC that would have probably gotten here sooner if I hadn't had the ovaries out.

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  • PiperKay
    PiperKay Member Posts: 173
    edited January 2020

    I had a total hysterectomy (uterus, tubes, cervix) and oophorectomy in September 2019 at age 52. It was an easier decision for me because I had some big and growing fibroids, so we just threw everything in - or out, I suppose - at the same time. I had been having significant hot flashes from the chemo already, and those continue, but at least I won't have cancer in any of those places! I have TNBC so I'm not on any hormonal therapy, but I don't think I've had any negative side effects from the loss of the ovaries - at least not yet after only a few months. The laparoscopic surgery was so much easier than the lumpectomy, especially the recovery! Hubby and I flew to Italy for a week less than a month afterward with no problems whatsoever. Good luck with your decision-making. It's such a personal thing...

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  • Jaybird627
    Jaybird627 Member Posts: 2,144
    edited January 2020

    First BC at age 44, BCRA2, gyne really wanted me to have ooph but I came out of chemopause and LIKED my estrogen!! Did not tolerate Tamoxifen, took Evista instead. By my early 50's I was in solid menopause so I had the ooph. No problems. Gave me peace of mind. Second BC at age 57. Now I'm taking Anastrozole going into my 2nd year and have managed quite well with less estrogen. I guess we all adapt? The major issue is vaginal dryness/atrophy. I take vaginal estrace because I have to for comfort. That's my story. lol.


    Jaybird

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  • Moderators
    Moderators Member Posts: 25,912
    edited January 2020

    Welcome, jco1 and Pif! Thank you both so much for sharing your experience here - it's so valuable to hear from others!

    The Mods

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