Worried about recurrence after Bilateral Masectomy

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I'm new here, so I hope this sounds ok.  I'm 44 years old and was diagnosis 1/7/09 with IDC <1cm stage 1, grade 2, 0/3 nodes ER+ PR+ Her2- extensive DCIS and LCIS, I had a lumpectomy without clear margins, then followed up with masectomy, after meeting with Onc.Dr. she advised me to have a bilateral masectomy do to other breast having ADH, so I had a bilateral masectomy with immediate reconstruction.  I didn't have Chemo., rad. or tamoxifen.  I now have felt a patch of small hard grainy bb like lumps right next to my implant near my arm pit.  I've been reading several of the other post, and now I am concerned.  Have any of you ever had these little bb like lumps?  Thanks for your in put...

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  • KellyMaryland
    KellyMaryland Member Posts: 350
    edited March 2011

    Busy- this has not been my experience, just bumping this up to see if someone else more knowledgeable can respond. Hoping it's nothing concerning but maybe call your doctor and get it checked for some peace of mind?

    Kelly

  • starbeauty
    starbeauty Member Posts: 327
    edited March 2011

    Not my experience either... agree with Kelly's suggestion.  Bump.

  • Busybee
    Busybee Member Posts: 13
    edited March 2011

    Thank you for your reply, that is my next step... I was just hoping someone had a similar situation that was b9...

  • dlb823
    dlb823 Member Posts: 9,430
    edited March 2011

    Busybee, I have a tiny bb-like thing (not grainy, though) in my armpit but on the opposite side of my unilateral mx that my primary doctor assures me is nothing to worry about.  I think she said it felt like a clogged sweat gland (vs. an enlarged node, which was my concern), but getting yours checked by your BS or PS would seem like the prudent thing to do.   Deanna

  • Nichola
    Nichola Member Posts: 402
    edited March 2011

    Hi Busybee

    I have had two lots of local recurrences:  I like you, initially didn't have chemo, tamox or rads after having multi focal (3 tumors) Stage 1 grade 1 tumours and I too had extensive ADH.  I however, , had a mastectomy and immediate skin-sparing LD reconstruction, but the cancer came back in 4 stops under the skin.  The first I felt, was like 2 grains of raw rice in the skin where by original largest tumour was biopsied, which eventually became like a raised bruised bump.  I was waiting to have it seen to when in no time another raised hard, small rubbery skin coloured lump came up in the scar of the "areola" disc.

    I had the reconstruction removed and they found two further tiny tumours in the skin (in total 4 x satellite nodules/tumours). I then went on tamox and had rads.

    I then waited a year and had a tram diep recon, followed a year later with a surgical hysterectomy and ooperectomy and 5 months later felt the skin near my scar tissue under my arm was pulling in and the area felt vaguely different.  I insisted on an investigation even though my onco PS thought I was being paranoid, and hey ho...a small tumour/second recurrence was found a little away from the scar under my arm on the chest wall.  I am now on arimadex.

    I have on my other side an area in exactly the way/where you descibe that I had looked at with US and it was nothing.  I now only look for nodules in an around the scar....in fact I just had a rice-like nodule removed last weekwhich thankfully was benign!

    I do hope this helps,

    Nx

  • Busybee
    Busybee Member Posts: 13
    edited March 2011

    Thanks Nichola, our diagnosis sounds very similar, I'll make an appt. first with my PS, then go from there, I just didn't want to go down this road again...

  • Busybee
    Busybee Member Posts: 13
    edited March 2011

    I think waiting is the worst thing.  Having to wonder if these little bb lumps are something to worry about.  I dont have my appointment until next Wednesday.

  • shadow2356
    shadow2356 Member Posts: 393
    edited March 2011

    I have something that sounds like what you are describing and it turned out to be fatty necrosis from the reconstruction. Totally benign. Good luck.

  • annie06
    annie06 Member Posts: 156
    edited April 2011

    Sorry to hear...but glad to find this...would like to add...found a small bb like lump near my mast scar (had bilat mast w/ recon..silicone implants). Had US twice at 6 mo. intervals. Results benign both times. Surg onc decided we keep watching it...everyone seemed to think it was a 'stitch'...so now...am recovering from having it removed. Waiting for path. Removal more extensive than I thought or expected. Took wide margins just in case....though saying he thinks we're OK. So I read most often...recurrences after mast. are found in/near mast scar (same)...but can be overlooked as can be taken for a stitch. UGH! I'm resting and trusting in God...outcome in His Hands. That brings me great peace. Waiting is hard...and I'm not an overly anxious person! Here we go............

  • annie06
    annie06 Member Posts: 156
    edited April 2011

    Path showed Idc. I guess a recurrence after bilat mast is rare.....but 100% when it's you.

  • Busybee
    Busybee Member Posts: 13
    edited April 2011

    Thank you for your response.  My PS thought it was scar tissue, but he wanted to watch it over the next month to notice any change, then he might consider taking a piece of it for pathology.  I can feel little bbs, but they are not near the mast.scar, only near the rib cage in the soft tissue next to my implant. So weird because they are only on one side... So we are watching and waiting...

  • brazos58
    brazos58 Member Posts: 261
    edited April 2011

    Busybee, glad to have found this thread.

    Last week I met the bb's under both of my arms...tricep area and at the very top of my armpit. Feels like bb's! Some are larger...scattered both arms/ even my good side. Its as if the texture of my underlying skin has changed. I had a BMX last june. So I am in the freak mode since last week.

    Saw surg onc yesterday.Some of this she felt was just subQ fat under the skin... the others are Lymph Nodes She has me on close watch. If they get to 1cm she will worry. I go back in 3 months.

    I did not feel much better after seeing the Dr.... just made me angry. So I watch and wait with as much Grace as possible.

    Get tired of getting things checked out, but its what we have to do.

     Keeping you company.

  • brazos58
    brazos58 Member Posts: 261
    edited May 2011
  • suzanneinphoenix
    suzanneinphoenix Member Posts: 208
    edited May 2011

    Hi, brazos;

    I see the NP at my MO's office this afternoon.  I have what feels like a cluster of lymph nodes in my tricep area, about 1/2 way between shoulder and elbow.....feels like different sized bb's!  So, playing the hurry up and wait game....again! Guess I'm with good company :) 

  • brazos58
    brazos58 Member Posts: 261
    edited May 2011

    HEY Suzzane,,, you have company for sure. I have a clusters in the same area you have in both arms.... I just made my appt for my 3 month check in july....   Let us know how you make out.

    ( Blessings and Good check up Vibes)

  • teds_pammy
    teds_pammy Member Posts: 3
    edited May 2011

    high I'm new here and am scared of the recurrance of my breast cancer. I had a bilateral mast. on Jan 14, 2011 and now I have found a lump just above the same breast.  I had chemo and radiation the last time and was told not to come back for six months. That was on May 9th of 2011. I have to go for a biopsy tomorrow. Is this a common thing?                                                                                                                                                                                                                                                                 Pam from Lively Ontario Canada

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