Security Upgrade - We will be asking everyone to reset their password on the 13th September 2023. To read further information please click here

Post Mastectomy Pain Syndrome

EAA Member Posts: 89
edited June 2019 in General discussion
Dear Sisters.. Has anyone had Post Mastectomy Pain Syndrome? 
12 years after my first Mastectomy and full auxiliary clearance, I’ve experienced 
itching; then prickling pain and feeling of inflammation along the scar and 
near the edge of the scapular under the arm. Most annoying in its suddenness 
like an attack. Also felt like waves of pain. Relieved mainly with cold pack. ..
until the next attack! Anyone else had this experience? 



  • kmakm
    kmakm Member Posts: 7,974
    @iserbrown and @Zoffiel have I believe.
  • EAA
    EAA Member Posts: 89
    Thanks kmak 
  • Zoffiel
    Zoffiel Member Posts: 3,372
    I've had pain since 2006, but it's mainly related to my implants. Horrible things. My sternum burns and my chest feels's hard to describe. A bit like when you  open your mouth too wide? Between that and the fire ants in my armpit, it's no wonder I'm grumpy.
  • iserbrown
    iserbrown Member Posts: 5,378
    The link below I had put up in a previous post when I first come to the realisation of where I was at

    Yes it does have a driving me nutty effect and although it has settled to what it was, no longer constant just occasional, it is real.  I have remedial massage, lymphatic drainage massage as I find it helps, especially with the annoying sternum pain which @zoffiel mentioned in what she has experienced
  • EAA
    EAA Member Posts: 89
    Hi Zoffiel, 
    oh dear! All we want is a life rather than living with added issues from
    treatment! I had burning sensation as well.. Because the attack was 
    sudden, I thought it was inflammatory. The cold pack helped the best.Using cold is a bit of a risk as it can increase the sensations 
    when the cold wears off . Also, wrap the pack in a little cold
    can also burn. My hunch was it was nerve pain. It sometimes responds to cold. I could move my shoulder OK. 
    Have you thought of having your implants checked.. another road probably an irritation to consider but, I’ve wondered about the many 
    of our sisters with implants and the implants recalled! I dont know 
    if they can setup an inflammatory reponse The fire ants sensation
    coukd be nerve pain if cold relieves it, it probably is, if not ...then got
    to think it out again.. Actually I started with a cold tap water flannel
    under my arm before progressing to the cold pack. 
    Im seeing the GP to day and hopefully will get an ultrasound at least.. 
    thanks so much for sharing . I hope a way can be found through this
    for you and me and others... 

  • EAA
    EAA Member Posts: 89
    Thanks iserbrown
    very helpful and challenging.. Lymphatic drainage therapists few and far between in Adelaide..but will check again.. 

  • iserbrown
    iserbrown Member Posts: 5,378
    Look for a Physio practice that has a Remedial therapist and ask as sometimes it is not directly known that is the speciality.  I only found out about Jo, my therapist, through the Physio
    Hope that helps
  • EAA
    EAA Member Posts: 89
    Thanks so much. very Helpful.. 
  • lrb_03
    lrb_03 Member Posts: 1,266
    @EAA Check the Australasian Lymphology Association website,  find a therapist link. Many level 1 practitioners are remedial massage therapists. My lymphoedema physio now has a massage therapist working 1 day a week with her. Luckily it falls on the weekday that I have off
  • EAA
    EAA Member Posts: 89
    Thanks so much for the info Irb 03  Great your therapy falls on the
    right day. 
  • TonyaM
    TonyaM Member Posts: 2,818
    I had my mastectomy 9 yrs ago and although I don’t have pain,I have discomfort.I have the sensation of duck tape strapped across my chest and a rolled up paper under my arm.The chest discomfort disappears when I put my prosthesis on.At night I have to sleep with a pillow against my chest.It’s weird- some sort of sensory perception?
  • Zoffiel
    Zoffiel Member Posts: 3,372
    @EAA I'm on my third set of implants-- it seems I do championship level adhesions and keloid scar in a way that makes me wonder about my (supposed) white European heritage. Like @TonyaM there is a constant sense of pressure and constriction. It makes deep breaths quite uncomfortable; in earlier days I likened it to being wrapped in barbed wire.
    Frankly, I'm tired of being investigated and if this is what I have to live with, so be it. I had a recurrence in my armpit so that surgery was an advancement of usual auxillary clearances. Once again, it's all scar tissue and I'm tired of being massaged, lasered and ultrasounded in attempts to manage it. I've had so many suggestions about what might work. Believe me, I've tried all reasonable remedies and flatly refuse to embrace any 'woo hoo' therapies.
    Thanks for your concern though. Mxx
  • EAA
    EAA Member Posts: 89
    Thanks TonyaM. it is strange. I was told, years ago, when being assessed that although there is no evidence of arm swelling,
    because all the glands have been removed, some fluid retention 
    will be present. I have always had a pillow under my arm sleeping
    and resting in armchair to keep my arm at heart level.
    This attack from left field, came out of no where. Thanks to other suggestions I’ve found a lymphedema  physio not far away.
    im going to have ultrasound next week to check no recurrences. 
    Im grateful hearing of others experiences.. I do have a tight feeling
    occassionally but my most social embarrassing moments is when I 
    have chest muscle spasms, just sitting and enjoying myself..
    especially if I’m laughing too much!  This happened from the beginning . Cardiac issues were excluded! I know wearing the prosthesis help. however, I gave up wearing them because the increased size and weight of the prostheses were too heavy.
    I had different surgeons in different States do the mastectomies.
    like most other experiences in Adelaide, the surgery here was not as complete as my first.So, I’m left with folds of tissue which meant
    i needed larger size prosthesis! Not happy! As with most events here! I’m desperately trying to connect to either Peter Mac or Olivia Newton centres in Melbourne but it’s very hard to cross State borders unless referred by an  Onc.
    Thanks for support on this forum, I’m finding my experiences
    are not uncommon. Does anyone know of any other disease that
    is full of  so many unwanted effects...that perhaps with more individual treatments could be minimised or eliminated!
    Having the disease is sufficient. 

  • EAA
    EAA Member Posts: 89
    Thanks Zoffiel.. I’m not sure if I’ve reached that state yet..
    life is too short and made for living instead of hassling the all too human medical profession. Thanks for the encouragement. 
    But, I can’t get out of my system how imprecise all this stuff is! 
    And those of us left with consequences from procedures that were meant to restore and alleviate.
  • primek
    primek Member Posts: 5,392
    Ok...I'd get to a might actually be shingles rather than post mastectomy pain . sided..burning itching and out for blisters popping up.