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Topic: Isolated skin recurrence after mastectomy

Forum: Just Diagnosed With a Recurrence or Metastasis —

Meet others who are just facing the diagnosis of a recurrence of breast cancer or metastatic (advanced) disease. You are NOT alone.

Posted on: Aug 22, 2020 08:20AM - edited Aug 22, 2020 08:30AM by Jacfin

Jacfin wrote:

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

Dx 4/15/2015, DCIS, Left, 6cm+, Stage 0, Grade 3, 0/3 nodes, ER+/PR+ Surgery 6/12/2015 Mastectomy: Left; Reconstruction (left): Latissimus dorsi flap, Silicone implant, Tissue expander placement Dx 3/12/2020, IDC, Left, 1cm, Grade 1, 0/3 nodes, ER+/PR+ Surgery 3/18/2020 Lumpectomy: Left Surgery Lumpectomy
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Aug 22, 2020 08:48AM Beesie wrote:

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.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Aug 22, 2020 09:56AM Jacfin wrote:

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

Dx 4/15/2015, DCIS, Left, 6cm+, Stage 0, Grade 3, 0/3 nodes, ER+/PR+ Surgery 6/12/2015 Mastectomy: Left; Reconstruction (left): Latissimus dorsi flap, Silicone implant, Tissue expander placement Dx 3/12/2020, IDC, Left, 1cm, Grade 1, 0/3 nodes, ER+/PR+ Surgery 3/18/2020 Lumpectomy: Left Surgery Lumpectomy
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Aug 22, 2020 09:14PM Beesie wrote:

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



“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Aug 22, 2020 11:24PM Mariadll wrote:

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

Surgery 8/14/2013 Lymph node removal: Left, Sentinel; Mastectomy: Left Dx 8/22/2013, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+ Dx 4/3/2020, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Chemotherapy 5/7/2020 AC + T (Taxol) Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery Prophylactic mastectomy: Right; Prophylactic ovary removal Hormonal Therapy Surgery Lumpectomy: Left
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Aug 22, 2020 11:31PM DiDel wrote:

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

Dx 11/12/2009, IDC, Right, 2cm, Stage IIA, Grade 2, 0/8 nodes, ER+/PR+, HER2- (FISH) Surgery 12/23/2009 Mastectomy: Right Chemotherapy 3/17/2010 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 8/15/2010 Dx 10/28/2015, IDC, Right, <1cm, Stage IA, Grade 1, ER+/PR+, HER2- Surgery 11/9/2015 Lumpectomy: Right Radiation Therapy 2/1/2016 3DCRT: Chest wall
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Aug 23, 2020 10:57PM Jacfin wrote:

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

Dx 4/15/2015, DCIS, Left, 6cm+, Stage 0, Grade 3, 0/3 nodes, ER+/PR+ Surgery 6/12/2015 Mastectomy: Left; Reconstruction (left): Latissimus dorsi flap, Silicone implant, Tissue expander placement Dx 3/12/2020, IDC, Left, 1cm, Grade 1, 0/3 nodes, ER+/PR+ Surgery 3/18/2020 Lumpectomy: Left Surgery Lumpectomy
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Aug 24, 2020 07:02AM helenlouise wrote:

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!

Dx 1/2013, DCIS, Left, <1cm, Stage 0, Grade 3, ER+/PR+ Surgery 2/3/2013 Lumpectomy: Left Surgery 2/10/2013 Lumpectomy: Left Radiation Therapy 2/28/2013 Whole-breast: Breast Dx 2/2018, IDC, Left, 2cm, Stage IIIB, Grade 3, 1/8 nodes, ER-/PR-, HER2- Chemotherapy 2/24/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 7/23/2018 Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 8/27/2018 Xeloda (capecitabine) Radiation Therapy 8/27/2018 Dx 4/2/2019, IDC, Left, 2cm, Stage IIIC, Grade 3, 1/8 nodes, ER-/PR-, HER2- Dx 4/16/2019, IDC, Left, 2cm, Stage IV, metastasized to other, Grade 3, 1/8 nodes, ER-/PR-, HER2- (DUAL) Dx 3/2020, IDC, Left, Stage IV, metastasized to other, ER-/PR-, HER2+ (DUAL) Targeted Therapy 3/18/2020 Herceptin (trastuzumab) Chemotherapy 3/18/2020 Taxol (paclitaxel) Targeted Therapy 3/19/2020 Perjeta (pertuzumab)
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Aug 27, 2020 06:07AM Jacfin wrote:

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

Dx 4/15/2015, DCIS, Left, 6cm+, Stage 0, Grade 3, 0/3 nodes, ER+/PR+ Surgery 6/12/2015 Mastectomy: Left; Reconstruction (left): Latissimus dorsi flap, Silicone implant, Tissue expander placement Dx 3/12/2020, IDC, Left, 1cm, Grade 1, 0/3 nodes, ER+/PR+ Surgery 3/18/2020 Lumpectomy: Left Surgery Lumpectomy
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Aug 27, 2020 02:47PM buttonsmachine wrote:

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.

Diagnosed at 32. Local recurrences in skin one year later due to needle seeding at initial biopsy. Now dealing with MBC. Dx 8/2016, IDC, Right, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Dx 10/2017, IDC, Right, Grade 3, 2/12 nodes, ER+/PR+, HER2- Dx 8/2020, IDC, Stage IV, metastasized to bone/other, Grade 3, ER+/PR+, HER2-
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Aug 27, 2020 02:50PM buttonsmachine wrote:

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.

Diagnosed at 32. Local recurrences in skin one year later due to needle seeding at initial biopsy. Now dealing with MBC. Dx 8/2016, IDC, Right, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Dx 10/2017, IDC, Right, Grade 3, 2/12 nodes, ER+/PR+, HER2- Dx 8/2020, IDC, Stage IV, metastasized to bone/other, Grade 3, ER+/PR+, HER2-
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Sep 2, 2020 08:40AM KBeee wrote:

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.

Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/25/2013 Mastectomy: Left, Right Chemotherapy 9/19/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/11/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/22/2014 Reconstruction (left); Reconstruction (right) Surgery 1/28/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Surgery 2/24/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Chemotherapy 3/30/2015 AC + T (Taxol) Radiation Therapy 8/24/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)
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Sep 2, 2020 09:51AM GraceB1 wrote:

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.

Grace B I'm just special - primary neuroendocrine, less than .001% of all breast cancers. Start each day with gratitude. Dx 6/10/2013, Right, 6cm+, Stage IIIA, Grade 2, 2/11 nodes, ER+/PR+, HER2+ (FISH) Chemotherapy 7/12/2013 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 1/8/2014 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Targeted Therapy 2/12/2014 Herceptin (trastuzumab) Radiation Therapy 3/4/2014 Breast, Lymph nodes Hormonal Therapy 5/18/2014 Arimidex (anastrozole) Dx 1/29/2020, Right, <1cm, Stage IA, ER+/PR-, HER2- Hormonal Therapy Femara (letrozole)
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Sep 2, 2020 10:28PM tangandchris wrote:

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. ❤
My reconstruction with TE's failed...had them removed because of infection. I am still unsure of if or when I will try again. Dx 10/24/2013, IDC, 2cm, Stage IIIA, Grade 2, 6/25 nodes, ER+/PR+, HER2- Surgery 11/23/2013 Lymph node removal: Left; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement Chemotherapy 2/13/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Sep 3, 2020 11:21PM Jacfin wrote:

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

Dx 4/15/2015, DCIS, Left, 6cm+, Stage 0, Grade 3, 0/3 nodes, ER+/PR+ Surgery 6/12/2015 Mastectomy: Left; Reconstruction (left): Latissimus dorsi flap, Silicone implant, Tissue expander placement Dx 3/12/2020, IDC, Left, 1cm, Grade 1, 0/3 nodes, ER+/PR+ Surgery 3/18/2020 Lumpectomy: Left Surgery Lumpectomy
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Sep 23, 2020 06:53AM TETM28 wrote:

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!

Dx 7/31/2019, DCIS/IDC, Right, 4cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH)
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Sep 23, 2020 07:05AM TETM28 wrote:

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.

Dx 7/31/2019, DCIS/IDC, Right, 4cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH)
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Sep 23, 2020 07:44AM - edited Sep 23, 2020 09:55AM by Jacfin

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

Dx 4/15/2015, DCIS, Left, 6cm+, Stage 0, Grade 3, 0/3 nodes, ER+/PR+ Surgery 6/12/2015 Mastectomy: Left; Reconstruction (left): Latissimus dorsi flap, Silicone implant, Tissue expander placement Dx 3/12/2020, IDC, Left, 1cm, Grade 1, 0/3 nodes, ER+/PR+ Surgery 3/18/2020 Lumpectomy: Left Surgery Lumpectomy

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