Anyone had hysterectomy following bi-lateral mastectomy?

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ninelives
ninelives Member Posts: 14
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

Hi ladies, looking for all of the wisdom I often see posted on this board.  In a nutshell I was dx'd with DCIS in right breast in March of this year and ulitmately had a bi-lateral mastectomy in May.  The path report indicated the DCIS was more extensive than previously indicated through several biopsies, MRI's, etc., and my doctors confirmed that was a good decision for me. Not needing radiation, the plan was to then go on tamoxifen.  Well of course, I found out that my hormone receptor test came back ER- and PR-.  My plan before was to have a hysterectomy before starting tamoxifien to hopefully avoid problems down the road the tamoxifen may cause.  Even though I won't be taking tamoxifen, am I crazy to still want to have a hysterectomy?  I keep reading about the strong correlation between breast and ovarian cancers, and not knowing much about my family history, I really feel like I just want to get rid of everything down there I don't need!!!  -- BTW- I am 43 and done with having children.  Anyone going through anything similar, I would appreciate your input.

Thank you.

Allyson 

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  • roseg
    roseg Member Posts: 3,133
    edited September 2008

    I wouldn't, but it is a personal choice - lots of other women here do.

    Do you have a family history of ovarian cancer? Is it much less prevalent than breast cancer.  

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  • redheadace1
    redheadace1 Member Posts: 212
    edited September 2008

    Hi, there, Ninelives. I don't know about your particular situation, but I have recently had to think about the possibility of hysterectomy (because of fibroids). Because of the BC/ovarian cancer link, I also sort of felt like getting rid of things. I also have had cervical cancer scares. 

     I'm sending you a link to a video that might be helpful. It was helpful to me. Although I've had courses in anatomy, etc., there were some (very important) functions of the female reproductive organs that I wasn't really aware of. Now I know that you can't always trust everything you find on the Web, but this video made me stop and think carefully about the possible consequences of surgery.

    Here's the link:    http://www.hersfoundation.com/anatomy/index.html

    Good luck with your decision. I'm sure you'll get more responses from women who have had more experience with your situation.

     Ace 

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  • ACAB
    ACAB Member Posts: 14
    edited September 2008

    Hi Allyson,

    I've not had a hysterectomy or bi lateral but my thinking has been similar to yours.

     I'm 43 and not looking to expand our family either.  I never had children, we adopted our daughters now 4 and 2.  I had DCIS in my rt breast in March too.  I'd scheduled a bi lat mast in May then cancelled.  I heard the word drains and got scared. 

    When I was first diagnosed with all this, every fear I'd had about ovarian cancer surfaced and I was sure I'd have a hysterectomy after a bi lateral mast.  Now,  I do differ from you in that I took LOTS of fertility medication over the years.  I assume that increases my risk for developing oc, hopefully not by too much.

    I don't think you're crazy to want a hysterectomy.  Once you've been diagnosed with cancer you want to decrease your chance of having it again. 

    It's good that you went through with your surgery.  I'm afraid I've entered into a kind of circular thought process regarding treatment.    I'm scheduled for a bi lat mast in Oct but not convinced I'll proceed.

    Hope you hear from someone that's already travelled the road you're considering.

    Amy B. 

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  • Farrah
    Farrah Member Posts: 566
    edited September 2008

    Hi Allyson,

    I'm thinking the same thing as you. I had bilat mast in May this year for DCIS. I don't know my ER/PR status. Because I'd heard of the link between bc and oc and because oc is often already advanced before symptoms appear, I started to worry more about that. I've had bladder and prolapse problems for years anyway but have always avoided the idea of hysterectomy because I didn't want to risk losing ovarian function and going into early menopause. Now that I'm 52 I must be close to menopause anyway so I'm less concerned about that. I'm seeing a gynecologist in a few weeks to discuss all this so I can report back then as to what he suggests. I am starting to calm down a bit a far as my oc fears go but still seriously considering hyster/ooph

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  • ninelives
    ninelives Member Posts: 14
    edited September 2008

    Hi all,  thanks so much for your input, I appreciate it!

    Farrah, it sounds like you've looked into pros and cons of having a hysterectomy too.  I believe I am perimenopausal although my gyno has not confirmed that.  I have had paps and ultrasounds and edometrial biopsies that have revealed fibroids and thickening of the uterine lining, but nothing that has come back cancerous yet?  So, I, too, have had issues down there.  Would you mind sharing what your concerns would be about going through with a hyster/ooph as it pertains to your situation.  Having similar situations, your input/feedback would be appreciated.

    Allyson:)

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  • Farrah
    Farrah Member Posts: 566
    edited September 2008

    Allyson,

    I've had blood tests recently which showed perimenopausal hormone levels. I also had a CA125 test which measures oc antibody markers. It's not really THAT useful as a screening test but it gives some indication and mine was well within 'normal' range.

    I guess my concerns with ooph is that my ovaries are still probably producing estrogen which helps prevent osteoporosis and also is somewhat protective against coronary artery disease. I'm also concerned that if I have them removed I might get thrown into a full on menopause with severe hot flashes, mood swings or whatever. I've had some symptoms of menopause but they are pretty mild really so I don't know what (if anything) would happen post ooph. I'm also worried about developing facial hair or getting thinning of my hair, thin skin etc. I really don't know if this could happen (or whether it's going to happen anyway) and I plan to ask the gyn when I see him.

    My particular concerns with hysterectomy is that the prolapse problems could in fact get worse because the uterus would no longer be holding up the bladder and maybe the urethra could kink because the bladder has fallen down and make me prone to bladder infections ( which I've never had before) I'm worried that the surgery could make my bladder urgency problems worse (and they're bad already!!) or maybe it could improve them, I don't know. I'm worried that I may develop stress incontinence because of the surgery and I haven't had too great a problem with that up until now. I need to get some better answers to those questions before considering surgery. I really would like to reduce my risk of oc but to be honest with you I think I'd rather die than live a life with no bladder control. The urgency problems I have now are enough of a problem and cause me anxiety on a daily basis ( will I make it to the public restroom and will there be a line or 'cleaning in progress' sign? - oh no! ) I haven't humiliated myself yet but I've had some close calls! 

    So that's basically where I'm at with the hyst/ooph thing and I guess now that I've calmed down a bit following the whole cancer diagnosis scare, I'm beginning to think that quality of life is more important than length of life but I can only allow myself the luxury of that choice because my boys are older (18,17,14) If they were younger I think I would definitely be more concerned with being around than quality of life. Not that I don't want to be around and see them grow up and be part of their life, I'm just reasonably confident that they would do okay even if I wasn't around. Anyway I digress and I'm starting to depress myself!Tongue out

    Hope my ramblings answered your question Allyson Smile

    Farrah  

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  • ninelives
    ninelives Member Posts: 14
    edited September 2008

    Farrah, thank you for your response, I appreciate it very much. :)

    Allyson

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  • Determined-2
    Determined-2 Member Posts: 1
    edited July 2013

    Allyson,

    I'm curious, did you have the hysterectomy? I had a bilateral Mastectomy in May of 2013 and I am scheduled for a hysterectomy in 10 days.

    Thank you,
    Determined-2.

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