Total Hysterectomy....ugh

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McClure77
McClure77 Member Posts: 55
edited July 2016 in Stage III Breast Cancer

After starting bleeding again after nearly a year of chemopause, my oncologist ordered a pelvic ultrasound and they found multiple complex cysts and abnormal thickening of my uterus. The recommendation was to have a total hysterectomy, which makes logical sense. However, I hated chemopause, and at 41, I'm none too excited about another mack truck menopause experience and all the other side effects that this will bring. Is it worth getting a 2nd opinion? I mean, I think the only other answer is to biopsy to see if it's cancer yet, and then monitor ad naseum if it isn't yet. That doesn't seem smart or fun, so hysterectomy is back to making a lot more sense but I feel like I'm stuck in toddler mode of "I don't wanna". Anyone have any thoughts or experiences to share?

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  • Molly50
    Molly50 Member Posts: 3,773
    edited April 2016

    A Total Hyster does not mean you have to have your ovaries removed. Did your doctor mention your ovaries?

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  • McClure77
    McClure77 Member Posts: 55
    edited April 2016

    Yes, unfortunately given that I had stage 3 breast cancer, they are especially interested in removing those. The fact they both also have cysts doesn't help their case, and it doesn't really make sense to keep them and then chemically supress them, right?

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  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited April 2016

    mcclure, I had a ooph and HX when I was 50. Honestly, I was glad to get it done. Also had cysts and fibroids. Surgery was done lapriscopically and recovery went well. Took a little while to not feel tired, but I don't remember any severe SE's. Dr prescribed hormone patch, but I had a reaction to it. I was prescribed HRT also, but didn't take it. I think I was perimenopausal at the time, so I think it just took a while for my body to adjust. Removing my ovaries didn't keep me from getting BC though...was DX'd 9 yrs later. I hope all goes well for you.

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  • new_direction
    new_direction Member Posts: 449
    edited April 2016

    I think i heard the cysts and uterine thickening caused by tamoxifen would most likely go away when ending tamox treatment (?)

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  • trying2staypositive7
    trying2staypositive7 Member Posts: 96
    edited April 2016

    Hi!

    Sorry that you have to make such a hard decision. It seems like the hard decisions never end!!! I was actually in the same boat as you 4 months ago. I had cysts on my ovaries and heavy bleeding was making me severely anemic so of course my doctor suggested a hysterectomy. I REALLY DID NOT want that!!! I went back and forth with the decision and lost many nights of sleep over it. But, I ended up praying on it and had the total hysterectomy on Dec. 22nd. I was truly terrified that all of the menopause symptoms would come rushing as soon as the anesthesia wore off. But, I was pleasantly surprised. I'm 43 (was 41 at breast cancer diagnosis). I talked to a really great person on here who put my mind totally at ease. She told me what I'm going to tell you.....Pray on it and have faith in your decision. God is always in the plan. I'm' not going to lie to you...the hot flashes are a pain but they do get better as time goes on (I'm only 4 months out though). The surgery itself wasn't bad but allow yourself a lot of time to rest afterwards. I tried to rush and I paid for it! This surgery will totally wipe you out if you don't get enough rest afterwards. You have to listen to your body. Also, go on the hystersisters website. That also helped me a ton. When my doctor first suggested this surgery I was like "why me" but more that I read, I guess that this is being the norm for later stage peeps. If you want to pm me any questions, no problem. Hope that this helps! I'm here if you need anything! I'm sure that someone with more insight will come along. You are in prayers!

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  • Octobergirl
    Octobergirl Member Posts: 334
    edited April 2016

    I'm sorry your breast cancer experience is further complicated by gynecological issues. Here is my experience and I hope it is helpful to you. I had a total hysterectomy at 42 after more than 2 years of severe bleeding and pain from fibroids and endometriosis. The hysterectomy brought immediate relief for the many issues I suffered too long when I postponed/resisted having the hysterectomy. It turned out that surgical menopause was a walk in the park compared to the relentless fibroid and endo symptoms. Hysterectomy was 11 years before my breast cancer diagnosis. Frankly, I am glad that gynecological cancer/issues were off the table when I was making decisions re breast cancer treatment.

    I lost a dear friend to ovarian cancer last year. It is a silent killer, often into stage 4 before significant symptoms and diagnosis. My friend was smart and strong and exhausted every treatment option but died within 3 years of her diagnosis. As horrible as it is to live under the shadow of breast cancer, I would do anything to preclude ovarian cancer. No way would I not follow the drs' recommendation for the completehysterectomy to avoid surgical menopause.

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  • McClure77
    McClure77 Member Posts: 55
    edited April 2016

    keepthefaith: Thanks for your response! Yes, there are no guarantees, are there? I really did NOT like the hot flashes and other symptoms after chemopause, so I'm dreading going through it again, and it will be summer again for it this time lol

    new_direction: from what they gyn oncologist said, once you've taken Tamoxifen, you'll ALWAYS be at increased risk of uterine cancer.

    Trying2staypostive7: Thanks for your response! I think that prayers or no, there just isn't another choice that isn't completely irresponsible of me. I think after all the treatment I have already been through, I'm nervous because I know the true pain of the side effects. The treatments are what they are, but it seems like it's the never-ending side effects that really get to you.

    Octobergirl : Thanks for your response, I appreciate it. Did you have a total hysterectomy, or did they leave your ovaries? From my surveys so far, it seems like people had a better time of things when the ovaries are left, especially when on the younger side. I agree that ovarian cancer is nothing to mess around with, I'm just extremely tired of all of this.

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  • suems
    suems Member Posts: 133
    edited April 2016

    I am another one treading in this minefield. I was dx'ed as Stage 4 out of the gate in Jan 2015. I was on Tamoxifen for 8 months, then switched to Arimidex due to progression. In February, I went onto Megace (a synthetic progesterone) for only 3 days ( SE's were horrific). Then I had my first period in 2 and a half years. Ultrasound found thickening, polyps, fibroids and a cyst. I've had no symptoms of any of this other than one bleed.

    I was told that Tamoxifen had caused the thickening, and the Megace triggered the bleed. It has been designated a one-off and benign for the moment, but if it happens again, I will probably get a full hysterectomy.

    I wish they could just go ahead and do it now. I'm living with time bombs in my bones and liver - I don't need to live in fear of this blowing up too. My tumours are ER/PR positive, so my ovaries are just a liability to me now.

    All the best to those suffering with this added worry in an already frightening world.

    Sue

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  • McClure77
    McClure77 Member Posts: 55
    edited June 2016

    HI Sue,


    Sorry for my delay, it's been busy. I'm sorry to hear you are dealing with this too. I had a radical hysterectomy last Thursday. The pathology came back clean, luckily. I know I should be especially happy about that, but it still leaves me with this feeling of "well, why did I cut all my parts out, then?". I KNOW, logically, that this was likely to be the outcome anyway. But emotionally, I STILL hate it, and now I have to contend with surgical menopause on top of everything. Ah well. I am trying to efel better about the risk mitigation, and I'm sure it will come in time. Right now I just feel vulnerable and overly emotional!

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  • cb123
    cb123 Member Posts: 320
    edited July 2016

    I'm so happy for your great pathology report. I'm having the same operation in August and probably similar emotional feelings. But a girl's gotta do what a girl's gotta do, right? We'll get through all this be healthier for it.

    Best wishes McClure77.

    cb

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