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Topic: What does local recurrence after mastectomy look like?

Forum: Not Diagnosed With a Recurrence or Metastases but Concerned —

Meet others concerned about developing a recurrence or metastases.

Posted on: Oct 11, 2020 09:22AM - edited Oct 11, 2020 09:22AM by SuperJ13

SuperJ13 wrote:

Hi, what are the various ways that a local recurrence after mastectomy could look like?

Dx 6/2016, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Oct 11, 2020 09:39AM SoulShine1969 wrote:

SuperJ13-

I had a small palpable lump a few years after prophylactic mastectomy. Turned out to be TNBC. I’m not sure of the other ways a recurrence could look.

Best of luck.

Surgery 10/14/2012 Prophylactic mastectomy: Left, Right Surgery 12/29/2013 Reconstruction (left); Reconstruction (right) Dx 2/18/2015, IDC, Left, <1cm, Stage IIB, Grade 3, 1/14 nodes, ER-/PR-, HER2- Surgery 3/30/2015 Lumpectomy: Left Chemotherapy 5/2/2015 Adriamycin (doxorubicin), Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Radiation Therapy 11/3/2015 Breast, Lymph nodes, Chest wall
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Oct 11, 2020 10:32AM MinusTwo wrote:

Sorry super - the answer to your question has more options than the stars in the sky.

Are you talking about bilateral mastectomy or just single? That adds more options.

However my personal story was a ping pong ball sized lump just under my collar bone.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Oct 12, 2020 06:56AM SuperJ13 wrote:

@MinusTwo- yes, you bring up a very good point which is why I asked such a general question. I'm talking about bilateral mastectomy, but local recurrence only on the breast ca side.


@SoulShine- thanks for sharing your experience.

Dx 6/2016, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Oct 12, 2020 08:22AM Peacetoallcuzweneedit wrote:

Anything appearing on your scar lines? Anything palpable?

5/2017 Left Breast DCIS 6cm Grade 3 6/2017 Right Breast IDC Stage 1A, Tmic 0.5mm, 100% ER+/100%PR+/ HER2- 6/2017 BMX, SNB left, TEs x 2 8/2017 TE deflated -Replaced Oct 2017 Hysterectomy + ooph 11/2017 Implant Exchange June 2018 Nipples.
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Nov 9, 2020 01:16PM Mememee wrote:

I had a bilateral mastectomy and a secondary surgery to clear my margins in 2018. Last week my MRI showed 2 lumps in my right breast, which is where my original BC was found. I can't feel anything but the radiologist deemed it bi-rads 5. After my bilateral mastectomy the oncologist surgeons said that i would "not" have a recurrence. He was wrong.

Some people have skin changes, find lumps, or see changes to scars, a recurrence can take many forms that are visible or not. If you are concerned talk to your oncologist, I hope they listen to your concerns.

Dx 10/17/2017, IDC, Right, 6cm+, Stage IA, Grade 3, 0/2 nodes, ER+/PR+ Surgery 12/6/2017 Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery 2/7/2018 Mastectomy: Left, Right Surgery 5/24/2018 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction Dx 12/7/2020, IDC: Papillary, Right, 2cm, Stage IIIA, Grade 2, ER+/PR+, HER2- (FISH) Surgery 2/9/2021 Lumpectomy Radiation Therapy 4/21/2021 Whole-breast: Breast, Lymph nodes, Chest wall
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Dec 30, 2020 02:47PM KatePeony wrote:

My breast surgeon said a local recurrence after mastectomy would be very easy to see and feel, like a "ridge" under the skin. I have also heard a cancer recurrence described here as a peppercorn, half a peppercorn, a frozen pea, a hard marble. I think the key is hard, immovable and fixed to whatever is around it. It would grow and change and evolve. I just went through a mini scare that turned out to be benign so I can share what a recurrence is not. When I stretched my skin tight over a small part of my scar and implant on the cancer side, I noticed a tiny "something" popping up a bit basically right along the scar. When I pressed down, it was soft and a bit rubbery I guess, not hard - but I could pinch the "thing" between my thumb and forefinger and kind of roll it around a bit. My breast surgeon's office was not terribly concerned since I reported that the "thing" had not grown or changed in 4 months, was not particularly hard and that I could move it between my fingers, but given that I had already had breast cancer, they sent me for a diagnostic ultrasound. Turns out, it was a 2 millimeter benign fluid-filled cyst in the skin I was feeling, just above the implant. Hope this helps someone in the future; this site was a source of comfort when I was worried and many women described that their scares turned out to be benign things like cysts, sebaceous cysts, scar tissue, calcifications, fat necrosis, sutures, staples, implant ripple, implant bubble, etc. I had also heard the description of "rice grain" and I would say that is fairly consistent with how my cyst feels.

Kate, diagnosed at age 42 Dx 1/7/2019, DCIS/IDC, Left, <1cm, Stage IA, Grade 1, 0/5 nodes, ER+/PR+, HER2- Surgery 2/11/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 5/17/2019 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 31, 2020 09:39AM BlueGirlRedState wrote:

Super - recurrence or a new cancer ? For me, it has been a murky DX. BC for the 3rd time. Twice left, now R-axilla. Whether it is recurrence, or a new occurence,or someting that got missed in orevious treatment, it may or may not make a difference in treatment. Oncologist thinks each is a new occurence rather than recurrence and has not said metastasis. When I pressed her and asked about tissue comparison, it was unclear if tissues are still there. She made the comment that even if the biopsy samples were compared, BC mutates so much that it could be the same but look different. I've never felt the lumps. Part if me thinks that she is very confident in BC treatment, and given the time interval and location, concludes that it is a "new" rather than recurrence or missed by treatment. As I read about cancer, it sounds as if it could be there for years, undetected, and then escapes the body's ability to control.

2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Detected by mammogram, confirmed with further imaging and biopsy.

2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018. Detected by mammogram, confirmed with further imaging and biopsy.

6/18/2019 Noticed Swelling in R-arm, opposite side from where lymph nodes removed. Urgent care determined lots of fluid but no clot. Oncologist referred me to Lymphedema therapist who recognized something was very wrong since on opposite side. Eventually more imaging and biopsy, with DX of ER+ tumor in R-axilla. 9/2019. Pet scan found no metastasis. Start Ibrance and Arimidex.

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Dec 31, 2020 11:51AM Ladyofthelake wrote:

@KatePeony Thank you for letting us know what a recurrence may or may not feel like after a mastectomy. This will certainly help me going forward.

ADH found on left side after prophylactic mastectomy Dx 10/15/2018, IDC, Right, 2cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Surgery 1/22/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 3/7/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 17, 2021 05:51PM Ms_Anthrope wrote:

thank you for addressing this topic. I just discovered a hard small "peppercorn" lump on my mastectomy side, stuck to my ribcage near my arm pit, almost exactly where my original cancer was. Needless to say, I'm freaking out right now... I'm just under 3 years out from original DX...

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Apr 18, 2021 01:19AM NoBananas wrote:

Ms_Anthrope, I am in your boat right now too. I saw a small pinhead lump on top of the very old mastectomy scar, turned out to be 6mm IDC. they’re calling it a recurrence after 18 yrs. They’re not sure if its a recurrence or a new primary, but treating it as a recurrence as its in the exact same spot the other one was, and the exact same cancer type too. I had surgery, and start chemo next week. Then after that 3 weeks radiation. Petscan showed everything else clear

Dx 10/2003, IDC, Left, 2cm, Stage IIA, Grade 2, 1/19 nodes, ER+/PR+, HER2+ (DUAL) Dx 3/9/2021, IDC, Left, <1cm, Stage IA, Grade 2, ER+/PR+, HER2+ (DUAL) Chemotherapy Taxol (paclitaxel) Chemotherapy AC + T (Taxol)
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Apr 18, 2021 03:30PM LivinLife wrote:

I do not worry much about recurrence though certainly think about it likely more often than from time to time- I definitely recognize the reality so much being on this site and seeing it is not a rare occurrence unfortunately. Thanks for the info on what a recurrence feels like... I so feel for each of you that have had or currently being treated for recurrence or new occurrence! It really sucks as so many on this site (and elsewhere...) say...

with expansive comedo necrosis & weak ER/PR Dx 7/2020, DCIS, Left, 2cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/31/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Apr 23, 2021 08:52AM KBeee wrote:

Mine felt like a frozen pea. I was referred to my PS since my surgeon, who I called with my concern, was sure it was from reconstruction. My PS was 99% sure it was scar tissue, but my gut said otherwise. He was however, wiling to do a surgical biopsy, when I told him I needed to be able to sleep at night knowing for sure. He scheduled it that same week. It was in fact cancer.

Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/26/2013 Mastectomy: Left, Right Chemotherapy 9/20/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/12/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/23/2014 Reconstruction (left); Reconstruction (right) Surgery 1/29/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Surgery 2/25/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Chemotherapy 3/31/2015 AC + T (Taxol) Radiation Therapy 8/25/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)
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Apr 23, 2021 09:43AM sunshinegal wrote:

Mine was the size of a pea, not particularly hard. It was on the ca side (right), around 1:00 position and deep - not visible on the surface. At first the NP and US techs said it was probably fat necrosis, but nope. Pure IDC, about 6mm (though latest, post-biopsy MRI says it's 5mm). I had DCIS and the Dana Farber oncologist said what I have might just be the natural progression of DCIS (I had no radiation, chemo, or hormone therapy). Though another doc called it a new primary. Who knows.

Dx 10/7/2010, DCIS, Right, 6cm+, Stage 0, Grade 2, 0/4 nodes, ER+/PR+ Dx 3/22/2021, IDC, Right, <1cm, Grade 3, ER+/PR+, HER2- (FISH)
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May 4, 2021 01:29PM Ms_Anthrope wrote:

I ultimately had an ultrasound for the lump I found in my mastectomy + implant side. I was told it was a "large dystrophic calcification" and it was designated as Bi-rads 3 (= come back in 6 months and will take another look). I was not offered a biopsy. I am just going to keep an eye on it and see if it grows. My original cancer grew so fast my skin started dimpling.

I see my oncologist in a week and I'll only start worrying again if my bloodwork is abnormal.

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