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Anyone have a Recurrence in Mastectomy breast?

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Has anyone had a recurrence of breast cancer after a mastectomy? Many of us are finding areas of concern, in the form of a lump, after having a mastectomy. I had two lumps in my left mastectomy breast with DIEP reconstruction, but after being tested twice with US, at 6 month interval, they were diagnosed as fat necrosis. Four years later they are still there, same size, same consistency, confirming the diagnosis.

I recently found two lumps in my right mastectomy breast reconstructed with implant, and I am assuming both of these are also fat necrosis. I am on Letrozole. My Dx in this breast was high grade DCIS and grade 2 IDC.

I am wondering if I should even mention these lumps to my BS who I will see in two weeks for my normal follow up visit or just monitor them myself over the next six months. Will mentioning them just set myself up for needless testing? I don't know of anyone who was diagnosed with a recurrence after mastectomy. I heard it can happen, but I find it highly unlikely, thus my reservations about mentioning them to my BS.

Anyone know someone who had a lump after mastectomy that turned out to be a recurrence?

Comments

  • mandy23
    mandy23 Member Posts: 113
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    Hi Marvericksmom-

    I think you should ALWAYS mention any changes in your breasts to your BS/MO. Even though it is hopefully not cancer again, you still want to find it before it moves somewhere else. Just had a visit with my MO and she said the best way to find a recurrence is by noticing changes in your breasts and although usually a recurrence after bilateral mastectomies is on the scar line….you just never know.

    You and I seem to share a history of this beast deciding to come back long after we thought we'd beat it. Always better to be safe than sorry.

    Best of luck and hopefully once again it is 'nothing'.

  • mavericksmom
    mavericksmom Member Posts: 1,268
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    Mandy23, thanks for responding! I see we have some similarity in our breast cancer. (I was Dx in both 2003 and 2022— but also in December of 2018)

    I am just going with the flow. Not worrying if I tell him or not. I just don't feel it is important. Have you ever known someone with recurrence after mastectomy? (especially within 8 months?)

    I think they just tell us about the possibility of recurrence because many don't understand that all the breast tissue can't be removed after mastectomy. If there is breast tissue there is a possibility, however small, of getting breast cancer. Just a fact. Not only have I never known anyone with a recurrence after mastectomy, I never read about anyone having that happen.

    I don't know why the scar line would be important especially in my case, as mine was not in the area of my cancer. My first mastectomy, the scar was under the breast, this time, different BS and reconstruction type, it was vertical.

    I never thought to ask about the incision prior to surgery, not sure what determines where it is. I am not at all happy with my mastectomies, especially my recent implant. (not a reflection on my PS as I think he is great) I will never let anyone see me without clothes on other than a doctor, and even that makes me cringe! I feel as if breast cancer surgery comes with a heaping dose of humiliation!

    If I tell him, it will be in response to him asking me question. I would give everything I have for a chance to go back to how my life was a year ago!

  • mavericksmom
    mavericksmom Member Posts: 1,268
    edited June 2023
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    Mandy, I can't believe this but I just searched topics to see if anyone was unhappy with their implants and up popped a topic on breast cancer recurrence after mastectomy! Two members had recurrences after mastectomies!

    Wow! So yes, I am definitely going to mention the lumps to my BS! I still feel that they are fat necrosis, but I don't feel stupid pointing them out now. Both members said they were told their lumps were likely fat necrosis.

  • mandy23
    mandy23 Member Posts: 113
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    Yes definitely mention it to your BS. Don't freak out, because it is rare. However, it is also rare to be dxd twice 15+ years apart and you and I managed to do that! 😎

    Sorry you are having recon issues…

    Hang in there!

  • serendipity09
    serendipity09 Member Posts: 769
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    Hi Mavericksmom!

    I had a recurrence that appeared just short of four months after my mastectomy. It was physically visible, looked like a blemish, but not treated until month nine.

    I would definitely mention any/all bumps to the MO/BS.

    I hope everything turns out ok! Sending hugs!

  • mavericksmom
    mavericksmom Member Posts: 1,268
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    Hi Serendipity! I remember you! How are you doing? I am so sorry you had a recurrence. I really appreciate your response and I am definitely going to tell my BS about the lump. It is so hard to know what could be a return of the cancer, and what is benign! If you don't mind me asking, why did it take 9 months to get treatment, and what was the treatment?

  • moderators
    moderators Posts: 8,287
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    Hi @mavericksmom,

    We would recommend having your MO/BS check, as others have shared. Always better to err on the side of caution, as much as we know the extra prodding, needling and tests are unpleasant! On the rare chance it is a recurrence, there is the benefit of catching it early.

    Please let us know any updates! We'll be hoping for the best.

  • luvdbyhim
    luvdbyhim Member Posts: 189
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    @mavericksmom I had a bilateral mastectomy, 0/14 lymphnodes in 2006, did chemo and breast implants. 2013 recurrence - did chemo, radiation, AI, and DIEP. Mine was not on the scar line.

  • serendipity09
    serendipity09 Member Posts: 769
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    @mavericksmom

    I'm doing good. Thanks! I hope you are feeling well!

    When I brought the blemish to the attention of both my surgeons and MO (almost four months after my BMX and on Xeloda), they all thought it was a blemish or an inflamed suture as it was right at the end of the scar line. They all felt it was way too soon for a recurrence. They thought it would just go away, but kept an eye on it. It didn't change. Five/Six months later when I had my exchange from TE's to implants is when the PS did a biopsy that determined it was positive. I ended up having to do twenty-five sessions of rads and another eight cycles of Xeloda.

  • mavericksmom
    mavericksmom Member Posts: 1,268
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    I am so sorry you had to go through that! Radiation is awful, at least it was 20 years ago when I had mine. I never heard of Xeloda, I had AC-T, also 20 years ago. My last two diagnoses were only treated with mastectomy and Letrozole. I did have the oncotype test done in 2019, but it came back 21, not likely helped by chemo due to my age. In 2022, no testing at all.

    I saw on another topic that you recently lost your mother to breast cancer. Words cannot express how very sorry I am! My mother also had it, as did two of my three sisters. I lost my sister to cancer, but it wasn't breast cancer. It has been 12 years this July and not a day goes by that I don't think of her!

    My heart goes out to you! You are amazing, all that you have gone through and the loss of your mother, and still you are reaching out to people like me, to offer advice to help us get through it! Thank you so much!

  • serendipity09
    serendipity09 Member Posts: 769
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    Thank you Mavericksmom!

    My mother passed from renal failure, not BC. Nonetheless, I appreciate your kind words. Nothing prepares one for the loss of a parent or a sibling. BC doesn't run in my family. I come from HUGE family and I'm the only one who's been dx'd with it. I recall you telling me about your family history with bc. I'm so sorry that this beast has touched you and your family and that water twenty years you are having to deal with it again. ~Hugs

  • mavericksmom
    mavericksmom Member Posts: 1,268
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    I had my appointment last week with my BS and I told my him about the small lumps I found, one is on the breastbone. I said I didn't know how to tell if it was cancer or fat necrosis. He didn't even ask where I felt the lumps, he just snapped at me that I was NOT to be doing self-exams and that I should leave the breast examinations to the experts like him!

    Now I have to wait until I see my MO in September. Until then, I have a very sore spot on my breastbone that is very painful. My "appointment notes" on my patient portal said "patient denies any new masses or skin changes!" Not true! He also said I denied bone pain, which is also not true! I told him about the pain in my hip, scapula, ribs and breastbone. He told me to tell my MO about that! Was my BS and I at the same appointment?

    I am up at 1;30 AM because my bones ache so much I can't sleep. The pain is always worse when I lay down. I took two Advil and hopefully that will help me to go back to sleep soon.

    I canceled the appointment I made with my BS in six months because it was scheduled a few days before Christmas and there is no way I want that doctor ruining my holidays! I was going to "conveniently" forget to reschedule, but to my dismay, his office called me and wanted me to reschedule in January. I felt trapped so I rescheduled the appointment. I am going to talk with my MO in Sept and see what he says. Honestly, it is a total waste of my time to continue to see that BS! If I keep the appointment, there is no way I will tell him anything. Why would I set myself up for him to dismiss what I have to say a second time? I lost the respect I for him. I am too tired of breast cancer to find yet another BS. The only other BS at that hospital is a woman who just started working in the same office as my current doctor. Ugh!

    I don't think my MO will blow me off like the BS did, so I still have hope that someone will take me seriously. Regardless, my peace of mind is on hold at least until September.

  • moderators
    moderators Posts: 8,287
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    @mavericksmom We're so sorry your BS treated you that way. Indeed, it sounds like you need to find a new one — or at least schedule all of your care through your MO. Is it possible for you to move up your appointment with your MO, given your serious and uncomfortable symptoms?

    We're sending good thoughts your way for nothing to worry about, but want you to get peace of mind sooner than later.

    Please keep us posted!

    —The Mods

  • margecandoit
    margecandoit Member Posts: 150
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    Mavericksmom- that is so crazy you were treated that way. My heart breaks for you. I haven’t heard that you aren’t suppose to do your own self breast exams. I would call your MO and see about getting in sooner. I am thankful mine Breast surgeon listen to me about my fat necrosis or what we think is fat necrosis. She wants me to move everything up. So maybe your MO will move your appts up. Why do Dr. not want to listen to there patients. It’s so sad and after you have had cancer 3 time it is mind boggling. You know your body best. Sometime I wish we could order our own test so we could have peace of mind.

  • mandy23
    mandy23 Member Posts: 113
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    @mavericksmom -

    Let's just say……your BS…. is full of BS….just sayin'….

    That is just ridiculous!

    Both my BS and my MO told me to pay attention to my breasts, especially since we no longer have mammograms or breast MRIs when we no longer have breasts. They both told me what to pay attention to and to come in if I have any concerns. I think you would be better off seeing your MO more often and your BS not at all!

    Are you able to call and talk to someone on your MO staff? Do they have an NP or PA that you could discuss it with? Especially with your history, I think it should be brought to their attention.

    So sorry that you are going through this. It really isn't right and know that you are right to be pissed. 😡

    Hang in there!

  • mavericksmom
    mavericksmom Member Posts: 1,268
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    Mods, margecandoit, and mandy23, Thank You from the bottom of my heart for posting your thoughts. Your support helped me more than you will ever know!

    I do think my MO will listen to me as he is the only doctor I ever went to that took handwritten notes of our conversation, then made a copy of them for me to take home. I also received the normal "appointment notes" that go on the patient portal.

    Unfortunately, I don't think I could handle seeing anyone about my breast right now. I am coming up on my one year anniversary of the mammogram, biopsy and diagnosis of my most recent breast cancer. Ironically, I would have been fine having an US, or bone scan had my BS ordered them. He just told me to tell my MO about the bone pain when I see him in September! I felt so empowered going into that appointment, I was sure he would order some testing or at least feel the lumps I felt and reassure me that they were nothing to worry about, but I NEVER expected him to tell me not to examine my breast, to leave that to the "experts!"

    My MO appointment is the beginning of September. If my bone pain gets worse, or I can't manage the pain at night with OTC meds, or if there is a change in the lumps, I will call my MO. I am definitely going to ask him if I could have all my follow up care done by him. I don't think I can ever walk into my BS's office again!

    Thank you all again, for your support. I will definitely post the outcome of this.

  • redemptivesufferer
    redemptivesufferer Member Posts: 85
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    I realize this thread has died down, but wanted to share my experience in case someone else looks for this information. I had a mastectomy (left) DEC 2016/DIEP reconstruction APR 2021. Last fall I felt a lump on the left side near my sternum. It took me awhile to get to the doc & to receive subsequent testing. Long story short, I was diagnosed with a BC recurrence in FEB. So it does happen. Take care & God bless, all!

  • mavericksmom
    mavericksmom Member Posts: 1,268
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    redemptivesufferer, I am sorry to hear you had a recurrence, but thankful that you shared your experience here!