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Diagnosed with second primary, treatment decisions

fur-n-scales Member Posts: 24
edited April 2022 in Just Diagnosed

hi everyone,

I've been reading through your stories and I appreciate all that you share! I had IDC 12 years ago, did lumpectomy, chemo, radiation and 10 years of tamoxifen. Recently there were changes in my other breast that lead to a biopsy showing DCIS. I'm overwhelmed with the information. After meeting with the breast surgeon she said that I have options- lumpectomy and radiation and possibly hormonal therapy. Or mastectomy and may not need additional therapies. My oncologist is on vacation this week so I'm stewing over everything. How does this new diagnosis affect my overall survival… What are the risks/beof each procedure… I'm also worried that if I choose lumpectomy that I may not have many options for hormonal since I already completed tamoxifen and I'm still premenopausal. How do I decide what to do?


  • moth
    moth Member Posts: 3,293

    I'm sorry you're getting hit with another primary but glad they found it at DCIS stage. I think one thing to know is that you have time to explore and gather info.

    One thing you might benefit from is the Oncotype for DCIS which would give an assessment of the risk that this will return or turn into IDC. That would perhaps give more input about how aggressive you need to be.

    When do you meet with your medical oncologist? They should be able to order the Oncotype and also discuss your hormonal therapy possibilities & what their recommendations are. You cold get a second opinion if you want. You don't need to rush into any decisions.

  • moderators
    moderators Posts: 8,219

    HI fur-n-scales, and welcome to

    We're so very sorry to hear of this new diagnosis, but we're so glad you've found us and decided to join and post. As you can already see, our community is full of amazing members, always willing to offer advice, information, encouragement, and support -- we're all here for you!

    As moth shared, you may want to ask about the Oncotype DX DCIS test -- here's some helpful information on that for you, from the main site: What is the Oncotype DX Breast DCIS Score?

    Also, here is a Podcast on Aromatase Inhibitors vs Tamoxifen for Pre-menopausal Women

    And, extensive information on Types of Hormonal Therapy.

    We hope this helps, and that you get some more responses soon. Please let us know if there's anything we can do to help!

    --The Mods

  • fur-n-scales
    fur-n-scales Member Posts: 24

    Hi moth, thank you for letting me know about the oncotype and for reminding me to take my time with the decisions. The surgeon is conferencing with my oncologist on Tuesday and she said to expect a call Tuesday night. So by the end of next week I hope to have a clearer understanding of how I’m proceeding. I’ve been informing my family but it’s tough when they ask what’s next

  • mle42
    mle42 Member Posts: 124

    hi fur-n-scales, I’m so sorry, what a kick in the teeth to have to deal with a new primary.I don’t know whether additional tamoxifen would be an option (it may be, I honestly don’t know), but ovarian suppression + aromatase inhibitors (AI) are another hormonal therapy option for premenopausal folks. It’s not tamoxifen or nothing. I hope you get some reassuring information from your oncologist and surgeon next week, at the very least confirming that you DO have options.

  • fur-n-scales
    fur-n-scales Member Posts: 24

    Hi mle42, thanks. I spoke with my oncologist today and she said she’s recommending bilateral mastectomy due to my genetic testing, plus the fact that I’ve been diagnosed twice, plus my anxiety level. The other route would be lumpectomy with radiation and ovarian suppression with AI. She said it’s doable but it’ll be stressful. I can definitely understand the recommendation but it’s tough to think about such a major surgery. I cried with her. I’m so confused