Needing a hysterectomy, should I have an oophorectomy?

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Ladyofthelake
Ladyofthelake Member Posts: 45
edited May 2019 in Hormonal Therapy - Before, During, and After

So here's my situation. I'm 50, premenopausal and started taking Tamoxifen 20mg at the beginning of March this year. Around the same time I had my Mirena (hormonal) IUD removed (I didn't feel the need to keep it any more, even though my MO said I could if I wanted). As soon as this happened I started experience daily cramping and sharp shooting abdominal pains. I went back to my OBGYN for my annual exam knowing something was very wrong. They found I have two very large fibroids 8cm and 9 cm along with several others, so the choice to have a hysterectomy was an easy one for me. Now the OBGYN wants to know if I want my ovaries removed at the same time.

Given my age, and that I probably only have a few years left before I'm fully menopausal, does it makes sense to have them removed at the same time? Am I missing anything? Will I automatically change to an aromatase inhibitor? I'm going back to my MO next week to discuss this, but would like to hear from anyone else who has been through anything similar. Any questions I should ask?

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  • Beaverntx
    Beaverntx Member Posts: 3,183
    edited May 2019

    LadyoftheLake, I was way past menopause when I had my total hysterectomy -- figured ovarian cancer is often hard to detect so I might as well "clean house"! Had the hysterectomy so I could stay on Tamoxifen. I'm avoiding AI s because I have had osteopenia for more than ten years, it has been stabilized and I did not want to risk pushing it to osteoporosis. The path report from the surgery indicated the ovaries were OK but there were some precancerous changes in the uterus, so my surgeon said I did the right thing in having the surgery.

    If it is possible to have your hysterectomy by robot aided laporoscopy, I highly recommend it. I had three very small incisions which are barely visible now and recovery was very easy-- the hardest parts were the lifting restrictions and my surgeon's requirement that I not travel more than an hour and a half without stopping to get out and walk.

    Best wishes (and hugs) as you move forward with this.

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited May 2019

    I did the ooph first, premenopausal at 54. Two years later I did the hyster. Neither was bad surgerywise, but hormonally the ooph was tough even at 54. In the end I could not tolerate the AI, so I went back to Tamoxifen. I'd think twice about doing it again. Still have hot flashes

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  • MexicoHeather
    MexicoHeather Member Posts: 365
    edited May 2019

    I was 50, did both the hysterectomy and oopherectomy one year after the mastectomy. Yes you can go directly to AI instead of tamoxifen.( Since you're going "down there", ask about a urethral sling. Everything is going to get weak with the estrogen loss). I sleep peacefully knowing that I didn't get ovarian cancer.

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  • Lisey
    Lisey Member Posts: 1,053
    edited May 2019

    I'm 43 and got the hysterectomy 6 months ago.  I REFUSED the ooph and am glad I did.  I feel 100% normal and while I'm glad I don't have periods now, I'm happily still on Tamoxifen and living life.  If you google the risks of an early ooph, it more than outweighs the benefits (unless you are predisposed to ovarian cancer).. Even then, they took my tubes, and studies now show 70% of ovarian cancer starts in the tubes,  So taking the tubes but leaving your ovaries still protects you against ovarian cancer.

    I posted about this in a different thread I start when I was weighing things and I remember your risk of bowel cancer and other cancers increased dramatically with an early ooph. 

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  • Lisey
    Lisey Member Posts: 1,053
    edited May 2019

    Here's some links that may help.

    As of 2018, standard protocol is to take the tubes for hysterectomies that are keeping the ovaries intact:

     https://www.cancer.gov/news-events/cancer-currents-blog/2017/ovarian-cancer-fallopian-tube-origins  

    For women younger than 50 at the time of hysterectomy, bilateral oophorectomy was associated with significantly increased mortality in women who had never-used estrogen therapy. At no age was oophorectomy associated with increased overall survival. Oophorectomy was associated with higher mortality from CHD (multivariable hazard ratios [HR] HR=1.23;95% confidence interval[CI], 1.00–1.52), lung cancer (HR=1.29;95%CI, 1.04–1.61), colorectal cancer (HR=1.49;95%CI, 1.02–2.18), total cancers (HR=1.16;95%CI, 1.05–1.29) and all-causes (HR=1.13;95% CI, 1.06–1.21). Results were not statistically different for any of the mortality outcomes when stratified by age at hysterectomy. Though there were insufficient numbers to analyze some cause-specific deaths in women age 60 and older, risk estimates associated with bilateral oophorectomy remained elevated for all-cause, total cancer, and CVD mortality in these older women. Among women with hysterectomy before age 50, oophorectomy was associated with significant increases in risk of deaths from CHD, colorectal cancer, total cancers, and all-causes.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4254662/

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  • SimoneRC
    SimoneRC Member Posts: 419
    edited May 2019

    Hi Ladyofthelake!

    I would ask questions of a few different doctors. Did your OBGYN have an opinion one way or the other? Have you consulted with your MO? Have you thought about speaking to a GYN Onc? Do you have a family history or genetic mutation? Do you know what age your mother and sisters, if you have any, had menopause?

    Surgically, adding tubes/ovaries is no big deal. The hysterectomy is the bigger part of the surgery. I had the total hysterectomy (with ovaries and tubes) but I am post menopausal, and have a genetic mutation linked to ovarian cancer.

    Lots to think about. Please try to talk to as many smart experts and make the best decision for you

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  • Ladyofthelake
    Ladyofthelake Member Posts: 45
    edited May 2019

    Thanks for all the responses everyone.

    Beaverntx,

    My gyn said she thought she could do the surgery through laporoscopy, but apparently I'm at the limits of what's possible, so have to be prepared that I may wake up and find I had a full abdominal. Still trying to decide if the uncertainty of a successful laproscopy with an easier recovery is better, or to just decide up front to have the abdominal and know what is going to happen when I go under. There's something about breaking everything up inside a bag before removing everything vaginally in the bag just doesn't sit right with me.

    MexicoHeather,

    I will ask my gyn about the sling. Thanks for the tip.

    Lisey,

    Thanks for the stats. That's a bit of an eye opener. I am right on the cut off, being 50. Not sure if that then counts as an early ooph or not. I don't have any genetic mutations for ovarian cancer, so this decision would be based purely on the hormone therapy aspects. If I was your age I think I would refuse it too.

    SimoneRC,

    My OBGYN had no opinion herself, she wanted to know what my MO's thoughts were, so I am going to see the MO on Wednesday. I don't have any history or mutations, I think my mom had a hysterectomy after I was born, but I have no idea why. I may consult a Gyn Onc, depending on what my MO says, but as far as I know there are no cancer concerns related to this.

    Thanks again everyone.


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  • bgirl
    bgirl Member Posts: 538
    edited May 2019

    No hyster here, but had an ovary that needed to be removed due to complications from Tamoxifen. My ob/gyn recommended taking out tubes to vastly reduce the risk of ovarian cancer while she was in there. I was 48 at the time. Left the other ovary, my sister had osteopenia within a year of having her ovaries out at the same age. My gyn thought it would be a hard shove to full meno and I was already having a lot of SEs from Tamoxifen. But like everything here a very personal decision.


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  • Ladyofthelake
    Ladyofthelake Member Posts: 45
    edited May 2019

    Quick update. I saw my MO this week. She said from her stand point, there would be some benefit to having my ovaries removed, but only by a small amount. She reminded me that with my oncotype score of 9, that I was already a low risk for recurrence anyway. She also wants to keep me on Tamoxifen as I am tolerating it well. So it was a good appointment all round, and helped me decide to keep my ovaries. The risk of major menopause side effects vs minimal benefit is not worth it for. It was also good from a psychological stand point to be reminded I'm a low risk for recurrence.

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  • SimoneRC
    SimoneRC Member Posts: 419
    edited May 2019

    Ladyofthelake,

    So great to hear that the appointment with your MO was helpful and you made a decision that you feel good about! And the bonus reminder about your prognosis to boost your spirits sounds like an added benefit:-)

    All the best!



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