Oopphorectomy + AI vs. Tamoxifen - Would like opinions

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ccristee
ccristee Member Posts: 9

I am 37 years old, and began taking Tamoxifen in August 2015 - so I am looking at a minimum of 4 and 1/2 more years of it. However, I'm concerned about the long term effects, such as other cancers, that Tamoxifen may cause. I asked my MO if a hysterectomy or partial hysterectomy was an option. He is a big supporter of Tamoxifen, but said that as far as preventing recurrence, studies have actually shown better results for women that have their ovaries removed and take an AI instead of Tamoxifen. I have not made a decision what to do yet. But I know that this past year was one of the hardest of my life because of chemo and surgeries, and I don't want to have to go through that again in the future because of adverse effects of Tamoxifen. Is anyone else my age considering having their ovaries removed - or did you already choose that route and have some advice?

Comments

  • JohnSmith
    JohnSmith Member Posts: 651
    edited January 2016

    There is a thread discussing this called: "Changing to AI/OS from Tamoxifen after reviewing SOFT study". Geared towards premenopausal women, you'll find some useful advice there.

  • Moderators
    Moderators Member Posts: 25,912
    edited January 2016

    Dear ccristee,

    Welcome to the Breastcancer.org community, we're glad to see that you found us!

    Many women worry about the long term effects of Tamoxifen and struggle to make a decision about the best treatment plan with the least side effects.

    Might we suggest, while you wait for more responses here, that you check in with our members over in the

    Bottle O Tamoxifen Thread.

    Many of the ladies there have been taking Tamoxifen for a long time and can offer their words of advice and support.

    Best of luck with everything.

    Hugs from us,

    The Moderators.


  • ruffy
    ruffy Member Posts: 141
    edited January 2016

    Hi there

    I have had an oophorectomy as per my oncologists recommendation a year about 7 months after my treatment was complete. I stayed on the tamoxifen for 4 years post ooph and am now about to start an AI for the remaining 6 years. I did find the oopherectomy quite difficult, the menopausal effects were very difficult for me to go through so suddenly. I'm on the other side now and feel more like myself thankfully.( so there is a light !) I found the tamoxifen very trying and was happy when my oncologist suggested a break. I'm nervous to try the AI because of their side effects but thankful we have options available to us.

    Good luck with your decision making, you will chose the right thing for you :)

  • 7of9
    7of9 Member Posts: 833
    edited January 2016

    I was 95% ER HER neg first time around - stage IIB before neoadjunct - 1b after with nuclear grade 2 but whatever the other grade is that was a 3. I was on Tamoxifen for 3 1/2 years and just diagnosed with a recurrence in one or more of my axillary lymph nodes. Regional recurrence - my onc called it - but the gyn surgeon referred to me as metastatic. Probably the same one/vicinity that looked suspicious when first diagnosed, but after neoadjunct chemo and clear sentinel nodes and margins they didn't do radiation or an ooph as I requested.

    I am regretting not pushing for an axillary node dissection, ooph and radiation. I was supposed to be 20% recurrence risk. I am scheduled for ALND and ooph on the 19th but I am pushing for a full hysterectomy as I now have a 5 cm fibroid on my uterus. I am done having kids - was done with first diagnosis, and really pissed to be going around with this again because we didn't take the aggressive approach the first time. I am active, (otherwise healthy) and am looking forward to walking my way through recovery and being back on my feet fast - oh, but wait, I have to have radiation this time. Make your own call but be warned the price of regret is very high and this disease doesn't give out a lot of second chances. Sorry if that is dark but it's the reality I found myself in these last few weeks. Just weigh it with all the other opinions.

  • ccristee
    ccristee Member Posts: 9
    edited January 2016

    Thanks for the responses! And the info on the other discussion threads.

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