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Reoccurrence after bilateral mastectomy

jan381 Member Posts: 2

In June 2020, I was diagnosed with hormone negative, her2+ IDC breast cancer. I received TCHP before a lumpectomy, followed by radiation and 12 cycles of Herceptin. In August, 2021 I was considered in remission. Then in January 2022, I was diagnosed with IDC, triple negative, inflammatory breast cancer. I had chemotherapy again, TC + keytruda and then AC + keytruda before my double mastectomy. I had my double mastectomy in August, had some complications with the expanders and eventually had them removed, then in November I started having skin nodules pop up, the first one was right under my scar and then I had about 8 with in a few weeks, they biopsied them all and resected a wound that wasn't healing as well and they all came back as Triple Negative IDC breast cancer. They are having me start chemotherapy again on Friday, then radiation and chemotherapy afterwards.

Has anyone been through this before? I think this is considered regional reoccurrence but not sure, still shocked and overwhelmed.

Much Love,



  • moderators
    moderators Posts: 8,229

    Jan381, we are so incredibly sorry to hear about what you've been through and what you continue to go through. That is so much to deal with in such a short amount of time, it must be so very overwhelming.

    This community is wonderful source of support, and we're all here for you. Our Triple Negative forum is a great place for more information, and we also offer virtual meetups for members to connect with one another outside of the forums, in a different setting. You can see our schedule of meetups here:

    We hope you find the support and encouragement you need here, we're here with you every step of the way.

    The Mods

  • melbo
    melbo Member Posts: 266

    Wow. That is awful and I’m sorry you have been through so much. I don’t have any insight for your question, but you have my sympathy and I hope that you can get it kicked to the curb once and for all

  • lw422
    lw422 Member Posts: 1,404

    Jan--sorry for the difficult time you have had, certainly more than your share. I'm curious about the tissue expanders after inflammatory BC treatment. The IBC Standard of Care is chemo, rads, then mastectomy with ALND. There is no reconstruction for at least a year after treatment is complete due to the high recurrence rate of IBC. Have you had all treatments at the same facility/doctor(s)? (I am not criticizing your care or providers; just wondering why the IBC SoC protocol wasn't followed.) I have TN IBC and am currently NED after pCR in 2021.

    I hope your treatment goes smoothly and you're finally able to get off this stupid cancer merry-go-round. My very best to you, and let us know how your treatment goes.

  • jan381
    jan381 Member Posts: 2

    I appreciate your response, I didn't get radiation because I had it the first time, but they hadn't mentioned an issue with getting expanders right after mastectomy for a DIEP flap would be a concern. But after everything I have read about in the past few weeks have me understanding it now. I am currently in the process of getting a second opinion from a more specialized doctor after all of this now.

    I appreciate all the support I have gotten on this thread thus far and I will continue to update.

    Many Thanks,