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Ovaries removed under duress

lbeck100
lbeck100 CSN Member Posts: 17 Member
edited April 2023 in Uterine/Endometrial Cancer #1

Has anyone had a total hysterectomy planned and we decided initially to keep ovaries - then on the operating table the doctor talked me into taking the ovaries so under duress I agreed she could take them but that wasn’t what I wanted and now I’m so sad - I feel so empty and can’t stop crying

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Comments

  • Forherself
    Forherself CSN Member Posts: 1,052 Member
    #2

    lbeck100 I'm sorry to hear about your sadness. I am surprised to read that you could give consent on the operating table. Did you have spinal anesthesia? I signed a consent for the doctor to have discretion about what she took out, depending on what she found when actually doing the surgery, and after biopsies done right during surgery. She has permission to take all my lymph nodes IF she found reason, which she didn't. I wonder if your surgeon made this decision based on biopsies during surgery. It is very hard to adjust to our new normal. We do have members here who decided to keep their ovaries and then the cancer returned in an ovary. Everyone is different. I hope you can get counseling to help you get through your sadness.

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  • lbeck100
    lbeck100 CSN Member Posts: 17 Member
    #3

    Thank you forherself - I would have been ok if she was deciding whether or not to take them during surgery but she wasn’t doing that - they have protocols and she was going to waive that and let me keep them if they seemed not to have disease but then in surgery day she said she just had to take them for my best interest whether she needed to or not

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  • Forherself
    Forherself CSN Member Posts: 1,052 Member
    #4
    https://csn.cancer.org/discussion/comment/1705375#Comment_1705375

    Do you know what grade of cancer cells you have? It might have affected her decision. I think we all sign consents that give the doctor discretion at the time of surgery. It is standard to remove ovaries for endometrial cancer. I hope you can find acceptance. This is a hard time.

    Sue

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  • lbeck100
    lbeck100 CSN Member Posts: 17 Member
    #5

    It’s interesting because I sought two opinions - first doctor said grade 1 - but MD Anderson said grade 2 and when I asked why I was told they say no one is grade one and they are very conservative / surgery was 6 days ago - I do not know staging yet- but she told my husband there was no visible disease on anything she removed. Thank you for your interaction - I will accept it - I have no choice I just know for male cancers - men get more choices and I don’t think it’s fair and balanced between how they approach the genders. I will seek HRT I read a recent pubmed study that the risk is 1.9% recurrence bs 2.1% With HRT even when the cancer was hormonal - I’ll take my chance

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  • Forherself
    Forherself CSN Member Posts: 1,052 Member
    #6

    A low grade and stage would be a good outcome for your surgery. I hope your doctors do genetic testing for Estrogen and Progesterone sensitivity on your tumor cells. We each have to make our own decisions. But that would be helpful for you in your decision.

    My grade was changed from 1 to 2 by the Cancer Center I went to. They looked at my slides again and included some genetic testing. I was P53 positive so I think that made me a higher grade. The pathologists don't always agree on the grade. It is not a cut and dried science. When you get your staging, be sure to ask about genetic testing that was done too.

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  • lbeck100
    lbeck100 CSN Member Posts: 17 Member
    #7

    Thank you - I’m anxiously awaiting

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  • Momschooling
    Momschooling CSN Member Posts: 119 Member
    #8

    I kept mine under the advice that low grade/low stage and premenopausal, it was best to keep them from a top 5 institution. One year later to the date I underwent surgery for ovarian cancer and did chemo, next is letrozole. If I could go back of course I would have removed them.

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  • MoeKay
    MoeKay CSN Member Posts: 506 Member
    #9

    My friend's sister was diagnosed with early-stage cervical cancer when she was in her thirties. Due to her young age at the time of diagnosis, they decided not to remove her ovaries when she had her hysterectomy. Some years later, she was diagnosed with advanced-stage ovarian cancer.

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  • lbeck100
    lbeck100 CSN Member Posts: 17 Member
    #10
    https://csn.cancer.org/discussion/comment/1705390#Comment_1705390

    Thank you for sharing

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  • lbeck100
    lbeck100 CSN Member Posts: 17 Member
    #11
    https://csn.cancer.org/discussion/comment/1705396#Comment_1705396

    Thanks for sharing

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  • NoTimeForCancer
    NoTimeForCancer CSN Member Posts: 3,601 Member
    edited April 2023 #12
    https://csn.cancer.org/discussion/comment/1705384#Comment_1705384

    That P53 will be good to know if you ever have to face this again. There are trials out there that are showing dMMR, POLE and P53 are receptive to some of the immuneotherapy out there. I pray you never need to find out though.

    Genetic testing is going to be critical as we move forward in treatments.

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