Oopherectomy/Hysterectomy

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LKSHER
LKSHER Member Posts: 209
edited June 2014 in Stage III Breast Cancer

*Posted this in Hormone Forum, but thought I'd try here, too. I have to make this decision and I am really struggling. It turns out, doctor is not concerned about the cyst at all, so the decision is really about the recurrence risk. I am BRCA neg. Thank you to anyone who shares.



I am going to ask for input in making this decision. Tomorrow my gyn surgeon who is also an oncologist will call to make an appt with me to come in to review my recent pelvic US and make a final decision on whether I will have my remaining ovary out (other one taken out in 2005 due to endometrioma that wasn't causing problems, but they weren't sure what it was until after surgery). I will also be deciding whether or not to take my uterus out, as well as my cervix.

I have completed treatment on Sept. 13th, have been on Lupron since April, and I have a cyst on the remaining ovary that looks the same as the one removed in 2005 and has shrunk quite a bit since the Lupron began.

It's been there for 2 years and it has been tracked. Of course they don't know what it definitely is unless it is removed, but it's never gotten bigger than 5cm in 2 yrs and has gotten smaller and bigger and smaller and bigger with my cycle before the Lupron.

My Onc talks about tamoxifen for a while even if the ovary comes out and then switching to an AI later, so that is why the uterus is in question. The thinking is, while they are in there.....

I have just turned 40 and I am finished having children. I was highly estrogen positive.

However, I would like to leave everything alone and just balance my life and my hormones and be very healthy and just take the darn tamoxifen.

I fear having none of that much needed estrogen for my bones, heart, and mind. I also fear for my sex life, while of course living a long life and becoming a grandma someday trumps that.

But.....will I have bones, a heart, and a mind to be concerned with if I don't get rid of this ovary?? Should I just stay on the Lupron? If so, how long?

I am very overwhelmed and confused and so ready to be finished with all of this and just live and enjoy life.

Any helpful and well-meaning sharing or advice is welcome.

Thank you!!

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited September 2013

    Hi

    sounds like you have alot to consider.  I can only share my thought about your comment "I would like to leave everything alone and just balance my life and my hormones and be very healthy and just take the darn tamoxifen."

    I totally resonate with that-- and if that is what you want to do, see if you can work with your team to get you there.... 

    Of course there are lots of things to consider, bones, sex life, heart.... but it is really helfpul to know what YOUR goal is, which might be what you stated... and if so, work from there.

    I am an advocate of less is more whenever possible.  I was highly ER but I did not have any of cysts that you describe (so that could change your plan) but I tried to be really conservative with the lumpectomy, etc.  I did do lupron for a couple of years with an AI because I could not do tamoxifen, and now I am only on the AI for a few more months.... Like you, I really want to be done-- and I have been lucky with no bone density problems so far.  I thought about taking the ovaries, etc.  and if there was a true medical reason to do so, i would not hesitate.

    But I htink you are being wise to really think about what you want.... and how you want to live your life.... as for staying on lupron, I am not sure what the long term implications are- and that is another question for the team.  

    Good luck-these are hard things, but you don't have to do it all at once--- what are the benefits/drawbacks of each decision (ovaries/uterus)..... 

    keep us posted.

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  • TectonicShift
    TectonicShift Member Posts: 752
    edited July 2020

    .

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  • wallan
    wallan Member Posts: 1,275
    edited October 2013

    Hey Guys;

      I had a oophorectomy and a hysterectomy 8 years old. I was in my early forties and premenopausal. I had these after chemo, radiation and 2 years tamoxifen which really affected my uterus. 

    So... I am fine. I was very worried at the time just like you. But i am healthy and still feel and look 40 years old, not 50. So.. it will be okay. 

    Just take care of yourself.

    I could not have hormone replacement therapy because of my history of hormone positive breast cancer. But the hot flashes were not that bad compared to chemo and radiation. They lasted a few months and disappeared. I have history of depression too and I was worried about that. But, I was fine. 

    Just take care of your self.

    God bless.

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  • LKSHER
    LKSHER Member Posts: 209
    edited October 2013

    I truly, truly appreciate these responses. I am hoping to make my decision by the end of tomorrow.

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  • karen1956
    karen1956 Member Posts: 6,503
    edited October 2013

    I had an ooph...my onc said there was no reason to take uterus as the association is with ovarian cancer not uteran..of course there are uteran concerns with tamox...since I was on AI's decided to keep the uterus..figured best to keep the things that help keep things in place!!!!

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  • SpunkyGirl
    SpunkyGirl Member Posts: 1,568
    edited October 2013

    Well, I have to weigh in here, because I was in your shoes at one time. I felt like I got mixed messages from the medical community on whether an ooph was necessary, so I did a lot of research. I think it makes sense theoretically that shutting down the ovaries reduces the risk of reccurrence, but the studies that have been done on it are inconclusive. With knowing estrogens impact on the heart and bones, I decided to not get the ooph. I feel like I must be one of the only St three ER pos girls here that did not opt for an ooph. I did do five years on Tamoxifen. Recently, I had some issues with bleeding between periods, but a pelvic U/S ruled out any issues. So, I am seven years out, feeling good, and feeling thankful. Any info you get here will be anecdotal, so just make sure that whatever you decide to do, weigh the evidence out there and don't feel pressured by anyone else. Use us as a sounding board no matter what you decide is right for you!

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  • LKSHER
    LKSHER Member Posts: 209
    edited October 2013

    Thank you. I am still very confused today and swinging back and forth. How sad is it that one of my biggest concerns and stressors is having to rely on others again for a while if I opt for the hysterectomy/ooph? I am afraid of being lonely, trapped, and depressed. My kids lead demanding lives and my husband was not shown how to be a nurturing and empathetic caregiver and he struggles with this. My extended family loves me, but can't be counted on. My friends are great, but I just want someone to come home with me, sit with me, help me, and just be here for me while I get through yet another surgery and trying time. I am feeling sad and overwhelmed. I am so angry that this happens to anyone.

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  • LKSHER
    LKSHER Member Posts: 209
    edited October 2013

    I have scheduled surgery for Oct 14th to have my remaining ovary removed. Thank you to everyone.

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  • LKSHER
    LKSHER Member Posts: 209
    edited October 2013


    Ovary and Fallopian tube are out...along with my other Fallopian tube which I was told by my previous surgeon was gone already. Hmmmmm.....


    I feel fine. Nothing major or unexpected to report.


    Thanks again for all the support leading up to my decision. I did leave my uterus.

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  • Momine
    Momine Member Posts: 7,859
    edited October 2013


    I am glad you are feeling well. For me it was an easy surgery too.

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