Er + , tamoxifen and hysterectomy anyone?

Desmonds1
Desmonds1 Member Posts: 54 Member
in Breast Cancer #1

Has anyone Er+ had a hysterectomy to supress estrogen? My insurance company is approving ovaries being removed but not the total  hysterectomy- it seems like more studies are showing tamoxifen causing uterine cancer thus my goal for total hysterectomy-

suggestions welcome!

Comments

  • KathiM
    KathiM Member Posts: 8,028 Member
    #2
    I had all of that....but for a different reason....

    For my cancer before the ER+ breast cancer, rectal cancer, I had a total hysterectomy.

     

    I have been on Tamoxifen for almost 9 years now with minimal side effects.

     

    The removal of my ovaries (with the rest...*smile* I am an old lady...was 49) put me right into full-on menopause.  The symptoms lasted about 3 months of intensive hot flashes, night sweats, etc.  I could not take anything to help the symptoms....ER+ breast cancer made even the risk of a small amount of "natural" estrogen (black cohosh) impossible.  

    I don't regret the decision...I wasn't using these organs much any more (uterus served me through 2 kids), my rectal cancer was stage III and the next door neighbor....but those 3 months...WHEW!

    You might ask your surgeon the benefits of keeping your uterus....will it help with the dryness....I always wondered...

     

    Hugs, Kathi

  • Desmonds1
    Desmonds1 Member Posts: 54 Member
    #3
    KathiM said:

    I had all of that....but for a different reason....

    For my cancer before the ER+ breast cancer, rectal cancer, I had a total hysterectomy.

     

    I have been on Tamoxifen for almost 9 years now with minimal side effects.

     

    The removal of my ovaries (with the rest...*smile* I am an old lady...was 49) put me right into full-on menopause.  The symptoms lasted about 3 months of intensive hot flashes, night sweats, etc.  I could not take anything to help the symptoms....ER+ breast cancer made even the risk of a small amount of "natural" estrogen (black cohosh) impossible.  

    I don't regret the decision...I wasn't using these organs much any more (uterus served me through 2 kids), my rectal cancer was stage III and the next door neighbor....but those 3 months...WHEW!

    You might ask your surgeon the benefits of keeping your uterus....will it help with the dryness....I always wondered...

     

    Hugs, Kathi

    Thanks Kathi-
    i think my

    Thanks Kathi-

    i think my uterus needs to go - as it already has a thickening lining- only 6 months on tamoxifen-

    hugs go back at ya!

    Susan

  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #4
    I had a total for hysterectomy

    I had a total for hysterectomy about 2 1/2 yrs into Tamoxifen-I had the internal ultrasound (unsure of the official name of it) every 3-4 mths-looking to thickening-which I did have so I had a total hystercomty and then back on tamoxifen. I finished my 5 yrs which ended Aug 2014!

     

    Denise

  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #5
    Desmonds1 said:

    Thanks Kathi-
    i think my

    Thanks Kathi-

    i think my uterus needs to go - as it already has a thickening lining- only 6 months on tamoxifen-

    hugs go back at ya!

    Susan

    Susan,
     
    I told my Dr take it

    Susan,

     

    I told my Dr take it all , you will not get me back again-so do it all at one time.

     

    Denise

  • Desmonds1
    Desmonds1 Member Posts: 54 Member
    #6
    disneyfan2008 said:

    I had a total for hysterectomy

    I had a total for hysterectomy about 2 1/2 yrs into Tamoxifen-I had the internal ultrasound (unsure of the official name of it) every 3-4 mths-looking to thickening-which I did have so I had a total hystercomty and then back on tamoxifen. I finished my 5 yrs which ended Aug 2014!

     

    Denise

    Thanks Denise- I appreciate

    Thanks Denise- I appreciate hearing your hysterectomy story- makes me feel more confident with my upcoming hysterectomy-

  • mebo60
    mebo60 Member Posts: 1
    #7
    hysterectomy after breast cancer

    I was diagnosed with stage 3B infiltrating ductal carcinoma at age 38-39.  All characteristics on path report were the worst...aggressive and fast growing, etc.  6 months chemo and 33 radiation treatments. ER pos and PR neg.  Have been on Tamoxifen and switched to Aromatase inhibitors (due to pulmonary blood clot on Tamoxifen...) I have been on Femara for years, and was given the option of taking it for life, (Mayo clinic recommendation) which I am.  Due to the aggressive nature of my tumor, my young age and pre-menopausal status, a hysterectomy was advised.  I had a total hysterectomy with uterus and tubes and ovaries removed.  I don't recall any trouble with my insurance company approving having the uterus removed....... why risk a uterine cancer?  I am 16 years cancer free ! I totally feel that I am cancer free because we threw everything at my cancer that was possible.  (started out with lumpectomy........had bilateral mastectomy in afterthought......)

     

  • crselby
    crselby Member Posts: 441 Member
    #8
    uterine polyps

    Hi Susan,

    I had a lumpectomy and brachytherapy radiation in 2009.  On advice from this board, I had a baseline transvaginal uterine ultrasound done, checking the thickness of lining.  Then after 6 months it was thicker, and again 6 months after that.  A hysteroscopic exam revealed 2 small polyps. I had a D and C.  Six months later the ultrasound revealed polyps and had another D and C.  I went off Tamoxifen needed a third D and C.  So I was on it for 1.5.  I have a thing for wanting to keep my "oringinal parts" so I wouldn't consider a hysterectomy.  Fast forward 6 years and I have a small recurrence of my cancer in the same breast, highly ER/PR +, as was my first one. I have no advice, just sharing my story.

    ~~Connie~~

  • Desmonds1
    Desmonds1 Member Posts: 54 Member
    #9
    crselby said:

    uterine polyps

    Hi Susan,

    I had a lumpectomy and brachytherapy radiation in 2009.  On advice from this board, I had a baseline transvaginal uterine ultrasound done, checking the thickness of lining.  Then after 6 months it was thicker, and again 6 months after that.  A hysteroscopic exam revealed 2 small polyps. I had a D and C.  Six months later the ultrasound revealed polyps and had another D and C.  I went off Tamoxifen needed a third D and C.  So I was on it for 1.5.  I have a thing for wanting to keep my "oringinal parts" so I wouldn't consider a hysterectomy.  Fast forward 6 years and I have a small recurrence of my cancer in the same breast, highly ER/PR +, as was my first one. I have no advice, just sharing my story.

    ~~Connie~~

    Thanks Connie for

    Thanks Connie for sharing-

    hysterectomy was on Friday and I am home recovering now- all seems well and got me a piece of mind that i should not get uterine cancer from tamoxifen- which I might be switching to an AI in the future-

    best, Susan

  • dodgerick
    dodgerick Member Posts: 2 Member
    #10

    ER+ HER- invasive lobular carcinoma with lymph node involvement, DMX in 2018, started taking Tamoxifen 5 months later following radiation treatments. I’ve been on Tamoxifen 5 1/2 years and oncologist wants me to remain on it for a total of 10 years. In that time, in the beginning I’ve experienced bleeding off and on with 3 endometrial biopsies. As of November 2023 I’ve been bleeding continuously for the last 3 months. I had a D&C last month and continued to have bleeding, so I’m now scheduled for a hysterectomy next month. This is kind of scary for me, I hope I’m making the right choice.

  • LifeInBloom100
    LifeInBloom100 Member Posts: 56 Member
    #11
    https://csn.cancer.org/discussion/comment/1713089#Comment_1713089

    I'm so sorry to hear you're experiencing this. May I ask - are you premenopausal? If you are, can you ask your doctor if there is any possibility to switch to lupron injections to suppress the ovaries and an aromatase inhibitor (which is an effective hormone suppressant in menopausal women or in conjunction with ovarian suppression - the aromatase inhibitor has slightly greater risk reduction efficacy than Tamoxifen as they BLOCK estrogen production rather than thwart it. But you must either be menopausal or take it in conjunction with Lupron, because aromatase inhibitors cause ovaries to INCREASE estrogen production in premenopausal women.

    I hope I'm not confusing you. Basically, if you're premenopausal - this may be an option (the Lupron plus AI) - to give you relief from the effects of Tamoxifen and a little greater protection and risk reduction IF YOU are suppressing your ovaries.

    If you ARE postmenopausal - maybe ask if you can be switched to an AI (like ANastrozole) - you wouldn't need Lupron injections. What you're describing are among known side effects of Tamoxifen in some women. I don't know if it's a final conclusion that you need a hysterectomy for sure -- but if it is, I wish you the smoothest recovery possible.

    And maybe they already have the plan to put you on an AI after the surgery. I'm thinking out loud - and truthfully it hadn't stuck in my brain when I began replying that you arealy have this procedure scheduled.

    Please keep us updated. Thinking good thoughts for you.

  • dodgerick
    dodgerick Member Posts: 2 Member
    #12
    https://csn.cancer.org/discussion/comment/1713246#Comment_1713246

    Thank you LifeinBloom100, you m stage has encouraged me and I am planning to speak with my medical team.

    Blessings!

    CharlieD

Discussion Boards