Prophylactic hysterectomy after breast cancer

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amysdogbanjo
amysdogbanjo Member Posts: 4
edited September 2018 in Just Diagnosed

I was diagnosed in early December with invasive ductal carcinoma. I had a lumpectomy with sentinel node biopsy and was deemed “clear of cancer” I underwent six weeks of radiation therapy and now am on a course of Tamoxifen for 10 years. Since starting the Tamoxifen in late April I have developed extremely heavy periods, which thankfully I have never had up to this chapter of my life! Sometimes twice monthly. I met with my medical oncologist and asked for a pelvic ultrasound because I suspected something was wrong due to the heavy bleeding. I had a transvaginal ultrasound that showed abnormal endometrial lining thickness. It was then decided to have a endometrial biopsy to check things out. I had that done last Friday found out Tuesday that all is well no cancer or hyperplastic cellular changes. Amen to that! My next course of action could be an ablation or perhaps a prophylactic hysterectomy. Since my cancer was driven by both estrogen and progesterone and the Tamoxifen is squelching these hormones (the uterus) needs estrogen to be healthy my body is fighting itself.... help has anyone undergone a hysterectomy in this situation? Thanking you in advance for any advice~

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  • Beaverntx
    Beaverntx Member Posts: 3,183
    edited September 2018

    amysdogbanjo,

    My situation is somewhat similar, except I was about two decades into menopause when diagnosed with BC. After surgery and radiation, I had to make a decision about which hormone blocker to take and chose Tamoxifen due to my history of osteopenia. Before starting Tamoxifen a pelvic ultrasound showed a thickened endometrium. Endometrial biopsy found benign polyps. Under these circumstances, my gyn surgeon was willing to do a robot assisted total hysterectomy. Surgery went well. Path report showed some cellular changes in the uterus which had a 10% chance of becoming malignant -- surgeon said I made the right decision to have the surgery. If you choose the surgery, I strongly recommend finding a surgeon who is skilled in doing robot assisted surgery. My recovery was amazingly easy--up walking within a few hours of surgery (basically as soon as I was awake enough!) and no pain medication needed at home. Came home less than 24 hours after the surgery, too.

    Feel free to PM me if you'd like.

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  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited September 2018

    Tamoxifen is a weird drug. It actually does not decrease your Estrogen - it just blocks it's effects in your breast tissue. The reason that women can have thickened uterine lining while on Tamoxifen is from the abundance of unopposed Estrogen and it's effects on the uterus.

    I recently went through a different scenario. My periods stopped with chemo and I only took Tamoxifen for a short while. I was found to have a thickened endometrium when I had some pretty significant lower abdominal pain one day. It continued to thicken on reassessment 3 months later and my GYN advised a D&C. And then I had a period!

    I haven't had another one in 3 months time (I'm 52) so maybe I'm done now. I'm not sure. The hormone testing seems to be moving more convincingly that way. And I do still debate trying Tamoxifen again except that I quit it for some kind of serious mental and emotional SE's.

    Perhaps a D&C would be a less invasive possibility for you? And then follow up on the lining and the periods? Only since there was no evidence of concerning cellular changes. And the entire lining would be sent to pathology to make sure nothing was missed.


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  • amysdogbanjo
    amysdogbanjo Member Posts: 4
    edited September 2018

    Thanks for responding!

    I will be making an appointment to consult with a OB in regard to either an ablation or a hysterectomy. D and C was not an option my physician recommended. I'm not all that thrilled to have a surgery, but have not read anything extremely positive after ablation. ie: weight gain, etc. Yes, Tamoxifen has a slew of unpleasant side effects. I have gained 10 lbs and lost a considerable amount of hair these past few months

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  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited September 2018

    Who did your endometrial biopsy? Not an OB/GYN?

    It seems like there are never any good choices when it comes to anything cancer related. I haven't heard bad things about ablation (although I'm sure there are some), but I have about hysterectomy.

    I hope that whatever you choose - it works and you have no problems!


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  • amysdogbanjo
    amysdogbanjo Member Posts: 4
    edited September 2018

    Hi again,

    My GYN did the endometrial bx.

    She is referring me to the ob/gyn in the same practice that specializes in robotic surgery. He does the most in my area. I must admit, I've had excellent care!

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  • amysdogbanjo
    amysdogbanjo Member Posts: 4
    edited September 2018

    Thank you for sharing your story! I know there is a purpose in all this, I'm just not 100% sure what it is yet. That said after my diagnosis I have spent many hours speaking with women who have developed this disease after me. I'm glad to be a comfort to those who were freshly diagnosed and have forged some great friendships out of this journey. At this point I am considering a hysterectomy, to get rid of these pesky "bits" that are causing much stress! I'm encouraged by your speedy recovery, and will let you know the outcome of the consult.

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  • Lisey
    Lisey Member Posts: 1,053
    edited September 2018

    Amys, keep in mind the hysterectomy (uterus removal) does NOT change your estrogen.  You'd need an oophorectomy (ovaries removal).  I'm getting an OOPH and a Hysterectomy in Nov.  Partially due to lining issues and mostly for the OOPH aspect which will move me over to an AI and decrease estrogen.  When women say they are getting a hysterectomy, most keep their ovaries for the hormones in normal world.   I'm 43 and having periods regularly.  

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  • Beaverntx
    Beaverntx Member Posts: 3,183
    edited September 2018

    Lisey, that is why I specified a total hysterectomy --uterus, cervix, tubes and ovaries--all of the "bothersome bits"( or at least potentially bothersome!). One does need to be specific so no areas of concern are left behind! Thanks for pointing that out.

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