To remove ovaries or not...any advice

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I just finished 4 cycles of chemotherapy and will start on Tamoxifan in about a month. I had a hysterectomy a year ago but did not remove my ovaries. I am considering having them removed now as concerned about ovarian cancer due to some family risk factors. If I do this, my understanding is that then I would have to take one of the aromatase inhibitors which can cause bone loss. I am 48 and not sure I want to experience bone loss now. In reading some posts it seems some folks that are post menopausal are taking Tamoxifan...is this an option? I would love to hear thoughts on removing ovaries preventatively and experience with Tamoxifan and/or aromatase inhibitors. Thanks!

Comments

  • labelle
    labelle Member Posts: 721
    edited April 2016

    I struggled with having or not having my ovaries removed so I could take an AI if I wanted to. It is a difficult decision. In the end I decided that at 52 and perimenopausal, they really aren't doing much and my OC loves Tamoxifen for me, so have left them alone for now.

    Some pre and peri-menopausal women have their ovaries removed so they CAN take aromatase inhibitors which are shown to me a little more effective in preventing recurrence, especially in women with a high risk of this happening, since AIs cannot be used by women whose ovaries are still functioning. Tamoxifen can be used whether you are pre-, post-, or peri menopausal.

  • Momof6littles
    Momof6littles Member Posts: 184
    edited April 2016

    I was wondering the same thing. Except I only have LCIS. I'm supposed to start tamoxifen after surgery. (Maybe lumpectomy, maybe prophylactic double mastectomy). But the geneticists was concerned about the history of ovarian cancer in one side of my family, and uterine on the other. I'm going to talk to both my OBGYN and MO next week. I'm 41. I don't know how the chemoprevention changes if I have my ovaries out. I'm sure my oncologist has said something, but I can't remember now.

  • Khagen
    Khagen Member Posts: 7
    edited April 2016

    Thanks for feedback. I didn't know Tamoxifan was an option post menopausal. Very interesting. I have the same fear of ovarian cancer due to family history and since I am not having any more children feel like why worry about cancer in my ovaries. I had chemo prevention and the way it was explained to me is that even though the surgeon successfully removed all cancer. Completely clear margins and nothing in the lymph nodes, it takes like a million cancer cells to show up on imaging and so they do "adjunctive" chemotherapy in order to kill in random cancer cells that may be floating around. I totally get not remembering information. They throw so much stuff at you and it's hard. I started bringing a notebook and a friend to appointments to help me. Hang in there!

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

    I kept taking Tamoxifen after I had my ovaries out (due to an ovarian cancer scare) because I already had osteopenia and my MO was fine with it. The nice thing is that Tamoxifen actually helps build bone density in post menopausal women.... however Tamoxifen does DECREASE bone density if you are pre-menopausal. LINK

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

    momof6----if you have a lumpectomy with LCIS, tamox can be used pre or post-meno; evista and aromasin can be used only post-menopausal. If you have prophylactic mastectomies, no meds needed afterwards.

    anne

  • Momof6littles
    Momof6littles Member Posts: 184
    edited April 2016

    Thanks forthis info Anne. I couldn't remember all of the scenarios.

  • amylsp
    amylsp Member Posts: 188
    edited May 2016

    I just had a prophylactic removal of my ovaries and tubes 3 weeks ago. I went back and forth on this decision for a year, so I'm glad it's finally behind me. My situation is a bit different than yours though as I will be 55 this year and have been in surgical/ probably permanent menopause for 18 months. I was still having regular periods at the start of chemo, but had been having peri-menopausal symptoms for a number of years previous to that.

    I've been taking Tamoxifen for a year now and tolerating it very well. I would like to give the AI drugs a try, however. And neither my Oncologist or Gynecologist could 100% guarantee that my ovaries were permanently shut down as I did not go through menopause naturally. The danger of AI drugs is that they can stimulate the ovaries to produce estrogen, even in the absence of a menstrual period. It would be a weak production of estrogen, but would be difficult to detect unless you were having blood tests every week. AI drugs would be completely ineffective at dealing with this possible estrogen production. So even though I was 95% certain I was in permanent menopause, I didn't want to be worrying about that 5% chance that the AI drugs might make my situation worse. My Oncologist is having me remain on Tamoxifen for 6 more months before switching me over to an AI drug. If I don't tolerate the AI drugs, I have no problem moving back to Tamoxifen.

    Good Luck with your decision! I know it's a tough one, as there are pros and cons to having your ovaries removed no matter what your age.

  • Icietla
    Icietla Member Posts: 1,265
    edited May 2016

    I was post-menopausal by about fifteen years when my ILC was found by mammogram about four months ago. I have been taking Letrozole for a little less than two months now.

    My maternal grandmother died of breast cancer at age fifty. I have no other information relating to family history of breast and/or reproductive system cancers.

    In the Eighties and Nineties, I underwent several surgeries for cervical dysplasia. Over my postmenopausal years, I had an intermittent mild ache in one side of my pelvic area, and I sometimes had a peculiar dream of having black bloody discharge. That dream came once more after my ILC diagnosis, and I took it as warning. I knew that ILC is sneaky and capable of evading detection by imaging. I was also mindful that sometimes treatment plans have to be changed. So bearing on my decision were my cancer diagnosis; that intermittent little ache; those warning dreams; a little knowledge of the sneaky nature of ILC; realistic prospects of changing treatment plans and changing risks therewith; and I could not imagine that any good would come of keeping my (useless) reproductive parts, especially since one of those parts had for so long tried to go cancerous.

    I had Total Abdominal Hysterectomy with Bilateral Salpingo-Oophorectomy about three weeks ago.

    Of course I cannot advise you.

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