Tamoxifen or Hysterectomy

Options
rsnews
rsnews Member Posts: 4
edited January 2018 in Hormonal Therapy - Before, During, and After

I am weakly ER+ been on Tamoxifen about 1 1/2 years, very high oncotype score 47! No real side effects from Tamoxifen except I've had periods off an on and of varied duration for about 8 months. My gyno asked me what I thought about having my uterus and/or ovaries removed. I haven't really thought about it, but I guess it's an opition and then I could go off of tamoxifen and not have to worry about whats going on with the periods and uterus? Lots of breast/cervical and ovarian cancer all over my family, but genetically my tests came back fine. Any thoughts from anyone that has done this.

· Share on FacebookShare on Twitter

Comments

  • Goodie16
    Goodie16 Member Posts: 446
    edited August 2016

    I just had a total hyster, with ovary removal, done at the end of July. I had it done because my estrogen levels weren't dropping fast enough on Lupron and my onc wanted to start me on an AI after I couldn't tolerate Tamox SEs.

    All in all my surgery was pretty difficult due to extensive endometriosis and adhesions. Recovery has been going well, though. I'm 3 weeks out now and feeling pretty much back to normal. I'm glad I had the surgery done and removed a few more places that cancer can grow.

    This a very personal decision, though. Best of luck to you!

    · Share on FacebookShare on Twitter
  • Lovinggrouches
    Lovinggrouches Member Posts: 530
    edited August 2016

    I had hysterectomy in June with everything taken out, plus I'm taking tamoxifen. My MO said I had to take it even with ovaries out. I'm guessing that if I get to where I can't tolerate it, I could switch to AI, but I'm only 42, so I will try to tolerate it as long as I can.

    · Share on FacebookShare on Twitter
  • DoubleWhammy
    DoubleWhammy Member Posts: 23
    edited August 2016

    I vote for the hysterectomy, having grown endometrial cancer all on my own (diagnosed with endo cancer and then breast cancer, 4 days apart).  It's my understanding that you would need to take an aromatase inhibitor which comes with its own set of issues, but I still vote for the hysterectomy, especially given your family history.  While not typical, I took Arimidex for 2 years and then Tamoxifen for 3, even though I am postmenopausal AND had had a hysterectomy.  My oncologist switched me because of my hair issues.  Turns out that is due to Taxotere, but it was worth seeing if Arimidex contributed.  Since I  had a hysterectomy, she didn't have to worry about me getting endometrial cancer and because I was osteoporotic and  did not want to take a bisphosphonate, Tamoxifen was a good choice for me.  My bone density improved and here I am, now 6 years later.  AIs are supposed to be more effective for ER+ cancers, but Tamoxifen is all they had X number of years ago and what the oncotype tests are based on and on and on. 

    Suzanne

    · Share on FacebookShare on Twitter
  • raqmatt
    raqmatt Member Posts: 6
    edited February 2017

    I was diagnosed late August 2016 with breast cancer. In September 2016 I had a bilateral mastectomy. My cancer was at a Stage 1B, so I am very lucky. I did 28 days of radiation, no chemotherapy. Being that I am premenopausal I am now taking Tamoxifen. I still have my ovaries. I've read that one of the side effects of Tamoxifen is ovarian or uterine cancer. Some women have recommended that I have my ovaries removed. Is anyone going through this same situation? My doctors have told me that chances are low that I would develop ovarian cancer, but..... chances were low that I would ever develop breast cancer, and here I am with breast cancer. My thoughts are that I am 53, I do not need my ovaries. Should I have them removed?

    · Share on FacebookShare on Twitter
  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,689
    edited February 2017

    Here is my opinion. You are not alone. Two weeks ago, I had my ovaries, uterus, cervix and tubes removed. They were very healthy, too healthy. Instead of going into "radiapause" like my MO thought I would, my hormones ramped up even further. My OBGYN said maybe I would go into menopause in 2 years. Maybe. Well, looking to cut my recurrence risk down, I thought, "baby years are over...really over...no more babies...factory is moving....out of business..." So, two weeks tomorrow is my hyster-oopherversary, and I am so relieved. I will start Tamoxifen tomorrow. Originally it was going to be an AI, but with my dental health an issue, Tamoxifen it is! How are you doing on Tamoxifen? You can join me on my thread...."Uplifting..." under the hormone section for some fun and spirited support. I can help walk you through anything you want to know for surgery....

    · Share on FacebookShare on Twitter
  • raqmatt
    raqmatt Member Posts: 6
    edited February 2017

    Thanks, Michelle, for your response. I am doing well on my Tamoxifen, no SEs so far and I've been on it 4 months.

    · Share on FacebookShare on Twitter
  • Guera_NM
    Guera_NM Member Posts: 17
    edited January 2018

    i had a hysterectomy in October 2017. No cancer. Was a heavy bleeder. Feel better except for a month long headache. Couldn't handle Tamoxifen. Bad on my liver. OncoTypeDx number was a nine. Still feel blessed.

    · Share on FacebookShare on Twitter
  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,689
    edited January 2018

    I had my hysterectomy/oopherectomy over one year ago, and feel pretty amazing. I am also celebrating my one year anniversary on Tamoxifen, with minimal side effects. It is all doable, especially if you "set your mind" to getting the job done, as my mother would say.

    · Share on FacebookShare on Twitter

Categories