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Possible Recurrence

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I was diagnosed with Stage 1 IDC and high grade DCIS in August of 2022. I had a lumpectomy to remove both spots in September and additional surgery to get clear margins on the DCIS in October. I had 4 weeks of radiation and I am taking Letrozole since the IDC was estrogen positive.

I had my first mammogram this week and looked at the report on the portal. The reports says that I have a suspected DCIS in the same place or close to the same spot as my surgery. (Birads 4). They are recommending a stereotactic biopsy. I see my surgeon on Thursday.

Has anyone had this happen to them so soon after surgery? I am so afraid that I am now going to need a mastectomy after good through all this. All of this is in my right breast.

Comments

  • mavericksmom
    mavericksmom Member Posts: 1,200
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    I am sure someone will comment who had it happen to them too.

    Like you, I had the same diagnosis in August of 2022, but it was my third breast cancer diagnosis in 20 years, so I wanted the breast removed! My breast surgeon gave me options, and asked me what I wanted. I told him I knew what I wanted but would first like to hear his recommendation. He told me mastectomy, due to my history and strong family history. That was also what I wanted. So I had a right mastectomy in October of 2022.

    I had a left mastectomy in 2019, I requested a bilateral mastectomy, but was refused. My breast surgeon at the time (I since changed hospitals and doctors) said the hospital policy was "never remove a healthy breast!" He lied to me, it wasn't hospital policy. Just over three years later, my once healthy breast had cancer!

    I had DIEP reconstruction in 2019, so I had no choice but have an implant reconstruction this time.

    You WILL have options, and the biopsy could end up being benign, but whatever you decide, as inconvenient as it is to go through treatments so close to your last diagnosis, you are lucky they found this now and didn't miss it!

    I wish you the best and hope you will keep posting here.

  • moderators
    moderators Posts: 8,195
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    @oea we're sorry you have to be here and worried about this new finding but wanted to send you a warm welcome to the BC.org community.

    We're crossing our fingers for the best results on your next tests. Please, keep us posted and stay connected, as you will get lots of support and understanding here.

    Sincerely,

    The Mods

  • oea
    oea Member Posts: 5
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    I saw my surgeon today. She is sending me for the stereotactic biopsy next week. I will post the results when I have.

  • moderators
    moderators Posts: 8,195
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    @oea yes, please keep us posted. We're thinking of you!

    —The Mods

  • oea
    oea Member Posts: 5
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    I received my pathology report today. It was negative for invasive and in situ malignancy , but the biopsy showed atypical lobular hyperplasia (e-Cadherin negative) and she is recommending a mastectomy. Has anyone had this diagnosis after having a lumpectomy for idc and DCIS? I am so confused because it’s not cancer but they are afraid it will be.

  • kaynotrealname
    kaynotrealname Member Posts: 412
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    I think anything is possible after breast cancer. Anyway I'm so glad it's not a recurrence but not surprised they are recommending a mastectomy. ALH is linked to a higher risk of breast cancer and usually they like to remove the area once discovered. Since you've already had a lumpectomy they're probably thinking it would just be best to go with a mastectomy this time around instead of removing more tissue.

  • roroshapiro
    roroshapiro Member Posts: 1
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    I was diagnosed with stage 1 IDC and high grade DCIS in July 2021. Had a lumpectomy and 4 weeks radiation also. Exactly 2 years later, I'm awaiting a MRI guided biopsy at the end of this month because they see 2 suspicious areas, birads 4. My surgeon hasn't discussed the results with me yet, but my research shows the characteristics in the radiologists report point to a recurrence or a new cancer. I don't remember being told the first 2 years after DCIS were so high risk, which I'm now finding out after joining this group.

  • moderators
    moderators Posts: 8,195
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    We're so sorry you find yourself here with this worry, @roroshapiro. You've come to the right place for support, we're here for you and hope this scare turns out to be nothing.

    The Mods

  • oea
    oea Member Posts: 5
    edited July 2023
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    @roroshapiro . I was not told that about the DCIS either. I also thought the radiation was for this. It has only been 6 months since my radiation.

  • oea
    oea Member Posts: 5
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    My surgeon is scheduling an MRI and then I will have surgery after we get the results from the MRI. She is ok with just removing the ALH, but prefers a mastectomy.