Margins

MaryAnnie
MaryAnnie Member Posts: 17
Has anyone had Mastectomy but found out they had close or unclear margins? What did you do?
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Comments

  • Deanne
    Deanne Member Posts: 2,163
    Hi @MaryAnnie,
    Despite a mastectomy there was no clear margin between my tumor and the chest wall (muscle). The surgeon did take a shaving of my muscle which was clear of cancer cells. 
    I then had radiation (after chemo) to the chest wall. This was what was recommended by my doctors.
    I am now almost 5 years from surgery and have had no recurrence.
    Ask lots of questions until you feel ok about your choices.
    Deanne xxx


  • Zoffiel
    Zoffiel Member Posts: 3,372
    Chemo and rads then Tamoxifen. It's all you can do. I did end up having a recurrence in my armpit, which is classed as local, but that took years to develop. While some parts of the breast are easily defined, other bits, like the parts on the side, are not so it can be a bit hit and miss as far as getting all the tissue. Did you have any nodes taken?
  • Molly001
    Molly001 Member Posts: 419
    Yes, I had an included margin. My surgeon never discussed it with me and never came through with my path report either, despite my request for it. My radio oncol told me about it but no one seemed overly concerned as it was only by 2mm. I had a 'boost' of radiotherapy to the chest wall in the area. 
  • cecily
    cecily Member Posts: 20
    Hi @MaryAnnie. I had a mastectomy in August 2017. The surgeon did not give me a copy of my path report until I insisted on having a copy 3 months later. When I got home and read the report I saw that my margin was involved (on the chest wall side). I was extremely upset that I wasn’t told and that I had to discover this myself. I emailed him late that night and he brushed it off. Said it wasn’t a problem. After a month of sleepless nights I went to see another surgeon to get a second opinion about the involved margin. She also wasn’t worried. I haven’t had any further treatment as I had already had radiotherapy for my first bout of breast cancer 3years earlier so couldn’t have it again. My cancer doesn’t respond to chemotherapy so couldn’t have that either. And to complicate matters, I had an immediate breast reconstruction at the time of the mastectomy so can’t feel my chest wall to see if anything is growing there. There’s not much I can do. Just have to wait and hope and trust that the surgeons are right. 
    Is your involved margin on the chest wall side or the skin side? 
  • MaryAnnie
    MaryAnnie Member Posts: 17
    Hi @cecily . Sorry for the late response. My margin was the median margin. It is the side which is innermost towards the middle of the body.  I also had immediate direct to implant reconstruction.

    My surgeon said not to worry as there was no more tissue there which he could take.  He offered to present my case to the panel of multidisciplinary experts. The panel came back and agreed that I ddidn need further treatment.  For my cancer, chemo is not prescribed.

    After 2 weeks of worrying, I approached another beast surgeon for her opinion. She also said no need to re-excise.

    Well, I was still worried and went back to meet my surgeon. I was worried that he may have left some breast tissue behind and again asked if he could re-excise. He explained that he took all tissue out and in fact, my flap was very thin. He said that when I go back for follow-up in the future, he would montitor that area carefully with ultrasound.

    I guess I have no choice but to trust their advice. For your case, maybe they can still monitor with ultrasound even with the reconstruction. You can ask for that when you go back for follow-up. This whole cancer thing sucks doesn’t it.

  • kmakm
    kmakm Member Posts: 7,974
    My wide local excision didn't have clear margins so I had a re-excision a week later. The margin for that was 1mm. My surgeon keeps saying "small but clear" and assured me it was enough.
  • Romla
    Romla Member Posts: 2,092
    I had a lumpectomy and sentinel node biopsy followed by a re-excision as the margins weren’t clear. The reexcision resulted in clear margins.I then had 16 rounds of radiotherapy.I was asked if I wanted chemo but gathered only slight improvement so said no.Am Er+ So now on hormone therapy Letrozole  for 5 years.
  • cecily
    cecily Member Posts: 20
    Hi MaryAnnie. It sounds like you and are are in the same position - positive margins after a mastectomy. I saw my surgeon again last week and again we spoke about the positive margins. He says it’s just a “technical” thing. The pathologists have to report it that way if there is no more breast tissue left adjacent to the mastectomy surgical margin. He reassured me again that it’s all ok and he’s not worried. Between the 2 of us we’ve seen 4 surgeons and they all say the same thing. I’m assuming that they’re all right and I’m going to stop worrying about it.
    xx
  • MaryAnnie
    MaryAnnie Member Posts: 17
    Hi Cecily. I just wanted to update that since I last posted, I had an ultrasound and MRI done. I was not comfortable with my close/positive margin and wanted to see if they could find any residual cancer or any residual breast tissue.
     
    Well, the reports say no sign of residual malignancy. And no appreciable residual breast tissue. This really put my mind at ease. If they did find residual breast tissue, I was prepared to  request my breast surgeon to re-excise.

  • AA
    AA Member Posts: 19
    edited June 2018
    I was also concerned as mine was only 2mm margin on the chest wall side (lumpectomy), my surgeon said it is all good as it is clear. Does anyone know the minimum acceptable size for negative margin?
  • Rubylulu
    Rubylulu Member Posts: 20
    Hi,

    I am 11 days post bilateral mastectomy with a direct to implant reconstruction.  On around day 8 my BCN called me to say all my pathology was clear including my removed nodes.  All good I'm thinking. But....when I see my surgeon on day 10 he tells me the nurse didn't read the report properly and there is an 8mm area of DCIS right under my nipple (I had nipple sparing reconstruction).  With a clear margin of only 0.4mm from the "inked" area.  AAAAhhhhhhhh!  He basically told me he's not sure what the right option is here and he will think about it - I see him again in 3 weeks.  He did say you could take off the nipple, but it could come back positive or negative.  If it came back negative it would all be for nothing.  You could have radiation, but this would probably destroy my implant.  You can take a watch and see approach.  I'm so annoyed, after all the scans and MRI's I've had this never showed up.  The whole reason for having the nipple sparing surgery was because my original  DCIS was 4cm away from nipple - so they said I was a good candidate.  I've had 3 surgeries in 8 weeks and just thought I could put all this behind me.  Apologies for the rant!  
  • kmakm
    kmakm Member Posts: 7,974
    @AA My breast surgeon said 2mm when I asked him this question. He also said that in the US they don't worry about it as much, that a margin is a margin no matter the width.
  • kmakm
    kmakm Member Posts: 7,974
    Oh @Rubylulu that sucks big time, I'm so sorry. I suffered from the dreaded occult cells as well. One lot was discovered in the pathology of my re-excision, the other in my bilateral mastectomy. Neither had ever shown up in any of the scans and ultrasounds. It's infuriating and scary. The technology is just not perfect.
  • AA
    AA Member Posts: 19
    Thanks @kmakm
  • MaryAnnie
    MaryAnnie Member Posts: 17
    @Rubylulu Aw, so sorry to hear about your situation. It is really frustrating when they didn’t detect the DCIS in earlier scans. I hope it works out for you.

    For me, I have no choice but hope they got it all.  There is no more appreciable breast tissue to take out and my breast surgeon said if he takes more under the skin, it may result in flap necrosis. He did say if I insisted (against his advice), he could cut out a skin eclipse at the area of the margin and it will result in a big scar and they will probably not find anything.

    It sucks that we go through mastectomy to be in the clear, but still have to monitor for residual disease.