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ER/PR positive and Her2 negative and Ovary removal

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tdpan2023
tdpan2023 Member Posts: 6

Hi all,

In 2019 I was diagnosed ER/PR positive and Her2 negative and mastectomy done on right side. No chemo, no radiation

I am 45 and this month I was diagnosed with ER/PR positive and Her2 negative on left breast. Dr suggested mastectomy, later they decide Chemo or radiation.

I have been hearing more about removing Ovary if it is ER PR positive. Removing Ovary can eliminate Hormonal therapy means no need to worry about meds like Tamoxifen. And also it will drastically reduce chances of ER / PR positive kind of tumor in future.

Anybody out here whose has gone through this kind experience.
I am 45 and have 2 kids so do not care much ovary at this stage of life. My Onco says no need to remove ovary so confused and not sure what to do.

So, I am seeking opinions, suggestion from others if anybody has any.

Comments

  • maggie15
    maggie15 Member Posts: 888
    edited October 2023
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    Hi @tdpan2023 , I’m sorry you are dealing with cancer again in the other breast. Removing your ovaries would not mean that you could stop hormone therapy. Some women remove their ovaries or suppress them medically so they can take aromatase inhibitors instead of tamoxifen since these meds are a bit more effective. AIs have side effects similar to those of tamoxifen, however. I hope treatment goes well for you.

  • italianchef
    italianchef Member Posts: 13
    edited October 2023
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    tdpan2023, I have elected to do an oophorectomy in December, after getting zoladex injections for about 8 months. My cancer is ER/PR + but HER2 -. I am doing aromatase inhibitor not tamoxifen, and I was premenopausal, so the zoladex was my option in order to do the AI. Now I cannot do tamoxifen due to a conflict with another medication I take. But, as I get closer to the surgery, there are days when I worry about it - I have no plans for kids, but something about organ removal sometimes seems drastic to me. But on the other hand, its becoming a bit cumbersome to do the injections every 4 weeks.

    My main worry about it comes from the longer term side effects like heart disease, osteoporosis (my DEXA scan showed I already have osteopenia), and memory issues, and whether they will be more severe with the ovaries removed.

  • mandy23
    mandy23 Member Posts: 105
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    Hi @tdpan2023 -

    I was dxd in 2003 at age 47. I elected to have an oophorectomy so I could take Femara (Letrozole) instead of Tamoxifen, due to it showing better results. Even with an ooph, you will likely still need an AI. It is a personal decision and YOUR decision, so if it's something you want to do, you will need to advocate for yourself if your onc isn't in agreement. I was happy with my decision as I was then 'safe' for almost 20 years until being dxd again in 2022. The surgery itself was easy for me compared to other surgeries. It does throw you into menopause and people have different symptoms related to that. I figured I would eventually get there anyway and might as well just do it.

    Good luck with your decision and once you make it, it is the RIGHT decision for you!

  • tdpan2023
    tdpan2023 Member Posts: 6
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    HI All, thanks for responses and well wishes. It gave some of solid input and information for me to move forward.

    Some updates, I talked with another onco and he suggests to shut down ovarian production using shot- Lupron and then AI(aromatase inhibitors). My onco stopped Tamoxifen as it was not affective and wants me to wait until surgery so they can see pathology report of tumor on left breast then decide which meds to start.

    My surgeon told me it will be too much to take out breast and ovaries in one operation, it will be too much shock to my body. I was thinking let's get it over it with one surgery but Doc may be right. I do not wanted to these cycle again and again.

    I am looking for more quality life and I had lot of problem with tamoxifen which I have been dealing with 2019. I am not sure what kind of side effects AI will bring to me. I wish it will not be as ruff as I have experience with tamoxifen. I trust god and he will look after me this time.

    Anybody out there who has smartly dealt with AI side effects? Please chime in.

  • maggie15
    maggie15 Member Posts: 888
    edited November 2023
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    Hi @tdpan2023 , Some people have no side effects or minor ones on AIs but others have bothersome ones. There are three AIs: anastrozole, letrozole and exemestane. If one causes big problems switching to another one sometimes helps. Also, different brands of the same AI can affect a person differently. There are meds that can be given to help alleviate some of the side effects like hot flashes but I would be lying if I said that everybody finds AIs tolerable. Your doctor's advice not to undergo two big surgeries at once is wise. You could have Lupron injections initially and an oophorectomy later on to avoid the monthly shots.

    When your pathology report is back and you have your appointment about next steps be sure to ask your oncologist what he could do to help with potential side effects. You might be one of the lucky ones who doesn't get them but you want to make sure your doctor will help you stick with the meds to prevent another recurrence. Good luck with all the upcoming decisions.

  • italianchef
    italianchef Member Posts: 13
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    I have been on anastrazole for nearly 10 months now, with monthly zoladex injections. Later this month I'm doing the oophorectomy.

    I have not experienced bad side effects from the aromatase inhibitor other than some hair thinning at the front of my head, above my bangs - which I really hope doesn't get worse. The menopause symptoms have not been too bad - the usual (though now less frequent) hot flashes. I never really considered tamoxifen because the AI made my distant recurrence percentage a few points lower, so I just went with that.

    Good luck with your decision and treatment.