Isolated skin recurrence after mastectomy

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Jacfin
Jacfin Member Posts: 114

I am told this is quite rare. Anyone else out there who had recurrence after a skin sparing mastectomy?

Comments

  • Beesie
    Beesie Member Posts: 12,240
    edited August 2020

    Jacfin, do you mean skin metastasis (Stage IV) or a localized recurrence against the skin?

    I don't know how common the first is, but the second is quite common. Approx. 1%-2% of patients who have a MX have a localized recurrence (higher risk for those with close margins) and those recurrences almost always are against the chest wall or against the skin or in the scar line.

  • Jacfin
    Jacfin Member Posts: 114
    edited August 2020

    Beesie thank you for dialling in to my question. You are a trusted source for me.

    From the information I have I am not stage iv with skin Mets. But my recurrence was 100% skin involvement not breast tissue involvement. My diagnosis concurred with COVID so a lot questions went unanswered. The focus was on surgery done quickly.

    I am having an appointment with my oncology team in a couple of weeks and am trying to get my questions lined up. I am fairly certain I am in the 1-2% you mentioned. I can see nothing online that equates to my situation. It’s been very confusing.


    I was expecting to be discharged In June after 5 years cancer treatment and monitoring so this diagnosis has been a shock.

    Thank you again- your knowledge and courage are sincerely appreciated x

  • Beesie
    Beesie Member Posts: 12,240
    edited August 2020

    Jacfin, I really don't know how "100% skin involvement no breast tissue involvement" would be defined - to my understanding a localized recurrence would usually include some breast tissue cells, but I'm way out of my league here.

    But as for the 1%-2%, while it's a small percentage, it's a lot of people. You'll find many here, including many who had recurrence at the skin or in the scar line:
    Topic: Recurrence after bilat mastectomy? https://community.breastcancer.org/forum/88/topics/727538



  • Mariadll
    Mariadll Member Posts: 12
    edited August 2020

    @Jacfin I am currently going through treatment for a local recurrence after my mastectomy. Yes it's rare, but it happens.

  • DiDel
    DiDel Member Posts: 1,329
    edited August 2020

    I had this happen as well. Mine also in muscle tissue. After surgery to remove skin and muscle I went through radiation therapy and 5 years later no issues.

    Mine was close to my primary tumor so they considered it an isolated local recurrence not stage 4. I had multifocal initially 4 tumors right breast

  • Jacfin
    Jacfin Member Posts: 114
    edited August 2020

    Thank you for your replies. Beesie- that was the mind bending bit for me on the pathology report where it stated there was no breast tissue involvement at all. Definitely not what I was expecting. (I keep your bowl of spaghetti image in mind - which at the time of my diagnosis was very helpful.) Thank you for the link to that recurrence topic too.

    Mariadll and DiDel I appreciate you sharing your experiences. You are the first I have come across with a similar situation and it was good to read of your outcomes. I wish you both all the best.

    Jac

  • helenlouise
    helenlouise Member Posts: 420
    edited August 2020

    I had nodules come up on my scar line twice. First time while I was on Xeloda. Ended up having a surgical biospy which took the three nodule. Then had another Nodule appeared. My MO diagnosed me as Stage IV. I got a second opinion with a view to chest wall resection. The MO and surgical oncologist discussed IV versus regional recurrence. They agreed its semantics. And that I required further systemic treatment because at this point the cancer is spreading via the lymphatic system. From there I had a PET which showed Mets throughout the chest (ribs, Mediastinal Nodes). My fourth line of treatment was THC and I am now NEAD.

    Good luck!

  • Jacfin
    Jacfin Member Posts: 114
    edited August 2020

    Apologies for my delayed reply Helenlouise. Thank you for sharing your experience with me. I have noticed the semantic debate about skin Mets in published studies which made finding info relevant to me much more confusing. You have certainly been through the wringer with all of this and I am so pleased to see you are NEAD (I’m a slow bear - am I correct in assuming that NEAD means No Evidence of Advanced/Active Disease ?)

    Good luck to you too

  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited August 2020

    This happened to me. I had a local recurrence in the skin only, after a skin sparing mastectomy. I would not exactly say it is rare, but maybe not common either. There are several of us on these boards who have had this.

    My recurrence in the skin was three years ago for me. What I learned, is that the problem with a local recurrence in the skin is that can spread quickly, and become out of control. It is very dangerous for this reason. ("Skin metastasis" can be local only, but is also seen in people who have distant metastatic disease - these are two very different situations from a treatment perspective though.)

    Not all doctors and cancer centers are adequately equipped to deal with a local recurrence in the skin. If you need to consult with another team at another center, don't hesitate.

    Treatment-wise, some people have a large "lumpectomy" on their mastectomy. I had more involvement, and had a chest wall resection and a skin graft. It was rough, but the cancer has not returned in my skin again. Radiation, and a change in hormone therapy may also be on the table.

    Feel free to PM me if you want to. I'm sorry you're in this situation.

  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited August 2020

    Also, as helenlouise said, please get a PET scan to rule out distant metastasis before embarking on huge localized surgeries and radiation treatments.

    It can be tricky to navigate these situations. Best wishes to you.

  • KBeee
    KBeee Member Posts: 5,109
    edited September 2020

    I had 2 local recurrences after BMX... occurred at the same time in 2 different places. Neither had breast tissue; both were under the skin between the muscle/soft tissue and the skin.

  • GraceB1
    GraceB1 Member Posts: 213
    edited September 2020

    I just dealt with recurrence this past winter. It was a small tumor on the scar between my flap skin and upper chest. It was classified as a local recurrence after finding nothing else on PET scans or MRI. It was 100% ER+ so I'm on Faslodex for the foreseeable future. I came up only a couple of months after I stopped taking Femara.

  • tangandchris
    tangandchris Member Posts: 1,855
    edited September 2020

    Can anyone describe what your skin looked like when you found out it had gone to your skin? I'm waiting on an appointment to have mine seen, and I just need more info if anyone would be willing to share. ❤
  • Jacfin
    Jacfin Member Posts: 114
    edited September 2020

    Again thank you for your contributions to this thread and apologies for my delayed response. When I am not dealing with my health I am working full time assisting small businesses to cope with the impacts of COVID so most days I tend to avoid screen time after work due to exhaustion.

    Buttonsmachine thank you for sharing your experience and the advice re PET. I did have a large excision of my reconstruction tissue I still have some questions about the biology of my tumour which I hope to get answered next week. I appreciate the offer of the PM too and may take you up on that if I need more info after quizzing my doctor.

    KBeee and GraceB1 I appreciate you dialling in too. Until I saw the comments on this thread and the thread that Beesie posted further up I hadn’t come across anyone with this type of recurrence so I am very interested in what you had to say.

    Tangandchris I discovered it as a lump in my skin. The surface wasn’t ulcerative so that was a good sign. My doctor said I did well to find it. Until the biopsy came back as IDC no one in the diagnostic chain thought it was a recurrence so there was quite a surprise for everyone. My skin appearance was otherwise healthy although you could see the lump beneath. I hope you get answers and reassurance soon.

    Sending thoughts to you all


    Jac

  • TETM28
    TETM28 Member Posts: 5
    edited September 2020

    Hi! I wanted to post because I have been dealing with something similar and I don’t find many people in my situation. I underwent. I have tumor cell seeding from my original biopsy that appeared on my skin one year later following my bilateral mastectomy. It’s not in the chest wall or near a scar but almost in the exact location where the original biopsy would have been performed, so my margins from surgery were great, these were just outside my margins given the seeding. I’m still lymph node negative as well like I was last year.

    I have been searching all over the internet trying to find information on seeding and shared experiences but it is so rare. Thank you for starting this thread!

  • TETM28
    TETM28 Member Posts: 5
    edited September 2020

    Tangadchris - mine presented as a red bump on my skin, like a large folliculitis irritation almost. My dermatologist biopsied and could feel one other small bump just under the skin. It was at the edge of my implant just at the bottom of my armpit.

    My doctors recommendation was a wide local excision followed by radiation given no lymph node involvement and same ER+ PR+ HER2- as my original tumor, followed by tamoxifen or AI and ovarian suppression. I couldn’t follow this treatment plan because I am currently 15 weeks pregnant so my only option was to start chemotherapy.

  • Jacfin
    Jacfin Member Posts: 114
    edited September 2020

    TETM28 I am so sorry you are dealing with this. Given your pregnancy this must be incredibly tough over and above the fear that BC bring. I hope between family and medical support you have the information you need to proceed with treatment confidently. Thinking of you and sending hugs

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