Tamoxifen After BMX for Low-Grade DCIS with Microinvasion?

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mzfrizzle
mzfrizzle Member Posts: 4
edited August 2019 in Young With Breast Cancer

I'm currently three weeks post bilateral mastectomy. My pathology reports shows 3 areas of ER+/PR+ HER- grade 1 micro-invasion. I'm 29 years old, so looking to ensure the best long-term outcome.

My oncologists have indicated that tamoxifen in this situation is a consideration, not a recommendation and the specialist I went to see said that the side effects would not likely outweigh the benefits in my situation and said she felt it would be over-treatment. They predict that I have a less than 5% chance of distant recurrence and that tamoxifen would minimally move the needle in terms of benefit. Essentially, they seem to be suggesting that if I am going to have a recurrence, tamoxifen is just as likely to not make a difference as to be helpful, with potentially no increase in overall survival.

Are there folks out there who have had a similar DX and not taken tamoxifen? I trust my doctors, but am still processing the idea of not taking Tamoxifen, as I fully anticipated it would be highly encouraged.

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  • SimoneRC
    SimoneRC Member Posts: 419
    edited July 2019

    Hi mzfrizzle!

    Sorry you find yourself here. It sounds like you are pretty newly diagnosed and working on a game plan. You will find a ton of smart, caring and supportive people here to chat with. I have a different profile so cannot really answer your question. I was wondering though, are you HER2 Negative or HER2 Positive?

    I am sure people will be chiming in soon who have been in similar situations. Deep breaths and keep us posted

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  • mzfrizzle
    mzfrizzle Member Posts: 4
    edited July 2019

    Hi!

    I'm HER2 negative. Yes, pretty newly diagnosed and trying to make decisions about what (if anything) to do beyond my surgery.


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  • Beesie
    Beesie Member Posts: 12,240
    edited July 2019

    I had a UMX for a very large grade 3 DCIS, with a grade 1ER+/PR- microinvasion. My oncologist recommended against Tamoxifen, but offered up that I could choose to take it as protection for my remaining breast. He didn't not feel that the microinvasion itself, which presents about a 1% risk of mets, was enough to warrant Tamoxifen. After doing my own research, I ended up agreeing with him.

    The one big difference is that I was 49 at time of diagnosis versus you being 29.

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  • mzfrizzle
    mzfrizzle Member Posts: 4
    edited July 2019

    Hi Beesie,

    Thanks for your reply! My oncologist said that because I've already done bilateral mastectomy, the Tamoxifen would essentially be only for addressing the lingering possibility of a distant recurrence. Similarly to your situation, the risk is so low that she felt the side effects wouldn't be worth it and that it could be over-treatment and cause more harm than good, particularly if I don't tolerate the meds well.

    My young age is the only thing that gives me pause, but the specialist I saw focuses on young women with breast cancer, so if there's anyone to trust, I know it's her. The diagnosis with low-grade is quite unusual at my age, so there is even less applicable research than the handful of pieces that seem to deal specifically with DCIS-MI. Still, I had fully anticipated having to take Tamoxifen, because it seems to be prescribed to almost all pre-menopausal women, so am processing having it not recommended by the best person I could have spoken to about this. I'm trying to see what experiences others have had to try to tame those niggling worries.



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  • alto
    alto Member Posts: 233
    edited August 2019

    I'm in my 40s and had a umx for Paget's with grade 3 DCIS (one area of microinvasion confirmed) with ~5% ER+. My oncologist recommended against Tamoxifen as the risks would outweigh the benefits. When I told my regular doctor, she nodded as she was completing the sentence for me. At that point, to be honest, I was happy to have a break.

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