Anyone HER2+ only done a prophylactic hysterectomy/oophorectomy

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4sparky
4sparky Member Posts: 18
edited December 2021 in HER2+ (Positive) Breast Cancer

Curious to know if anyone has done this as preventive measure…..any experiences/insight appreciated.

Thanks,

4sparky

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  • RebzAmy
    RebzAmy Member Posts: 322
    edited November 2021

    Hi 4sparky,

    I haven't had this done but am wondering and interested about the response you get and would like to know why you posted this. Is there a higher chance of getting ovarian cancer if you had HER2+ breast cancer?

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  • Aram
    Aram Member Posts: 417
    edited November 2021

    I will be doing it but not because of HER2 but because I am BRCA1 positive. Why are you considering it?

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  • 4sparky
    4sparky Member Posts: 18
    edited November 2021

    Thanks for the replies, I am sorry if my post added any additional worries for you RebzAmy that certainly was not my intent. I have not heard of HER2+ causing higher risk for ovarian/endometrial cancers but I have family history (mother had BC twice and died from endometrial cancer) and with that and my BC diagnosis along with a couple other factors unrelated to cancer I was told I am higher risk. It’s just such a big decision and I am trying to get as much input as possible. Thinking I may proceed to give myself peace of mind since I personally have several risk factors for ovarian/endometrial cancers

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  • RebzAmy
    RebzAmy Member Posts: 322
    edited November 2021

    Hi again 4sparky, no worries, you didn't especially worry me but I just wondered if you knew something about being HER2+ that made us more susceptible to getting ovarian cancer. I understand what you have said above and sorry to hear you are having to think about having it done and also about your mother. Hoping all goes well for you.

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  • ARmom4
    ARmom4 Member Posts: 163
    edited November 2021

    After I was diagnosed I found out I have a genetic mutation in the ATM gene. I had a BMX. I chose to have a hysterectomy/oophorectomy because I was done having kids and my cancer was highly ER/PR positive. My particular gene mutation is similar to BRCA so it's sort of prophylactic too.

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  • 4sparky
    4sparky Member Posts: 18
    edited November 2021

    Hi RebzAmy - thank you for letting me know I didn't cause you to much distress with how I titled/asked for input from others. Thank you also for your kindness and well wishes, they are greatly appreciated. I hope you are doing well!

    ARmom4 - Thanks for your reply, have you had any issues with anything since the hysterectomy/oophorectomy? I am a bit anxious about the surgery and how my body will react/function without the estrogen but I feel it's a smart choice to help reduce my risk. I am not familiar with the ATM gene but will do some research on it as the more I can learn the better!

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  • MSSWISS
    MSSWISS Member Posts: 12
    edited December 2021

    Hallo, I have just been diagnosed with faulty BRCA1 gene after my second breast cancer aged 59 (TNBC) LB. I had my first BC at 52 (Her2+) RB. I am more worried about potential heart problems after being on Herceptin for 18 months than ovarian problems. I am not having a mastectomy and am really petrified of having my ovaries (even post menapaus) as I have read that can also cause cardiac problems later in life. Has anyone opted to be monitored for ovarian cancer rather than a BSO? I was told that a CA marker test can help so I went rushing out to have one (CA125) of 8 but then I've read that these scores dont make any difference so I am not sure why they are used? Anyone know the answer? I have to wait 5 months to see a gyn (based in UK) so I am panicking a bit now but on the other hand, I have lived to 61 without any gyn problems, without even knowing that I had a faulty gene). Thanks all.

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  • Aram
    Aram Member Posts: 417
    edited December 2021

    MSSWISS، unfortunately ovarian cancer screening either by blood test or imaging is not very effective in finding cancer in early stages. That is why BSO is recommended.

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  • ARmom4
    ARmom4 Member Posts: 163
    edited December 2021

    Sorry for the late reply. I just noticed. My surgery went very smoothly. Easy healing. The surgical menopause is the hard part. Its been 17 months since surgery. Hot flashes were really bad at first but now they're controlled with Oxybutynin. I also have joint pain (but I also have arthritis), and my skin is very dry. So far, I think that's all.

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