Post Mastectomy Pain Syndrome

This is driving me nutty again!

Thanks TonyaM.

Thanks EAA, I’ve been wearing a prosthesis for 9 yrs now and have gone up a few sizes despite not putting on weight elsewhere- go figure!
I’m used to it but get abit sick of being lopsided sometimes and then I think of recon or lopping off the other one.Big decisions either way,which I’m not ready to take.It’s good to hear other ladies experiences.

Hi TonyM, Both breasts grew tumours. The first 2007, the second 2015. The first Invasive ductal with lymph node Mets the second,
invasive lobular no Mets. Both self discovered. Because of Family History, I chose Mastectomy in both instances. Being flat has advantages ,mainly not putting on two large prosthesis.And,in hot
weather it’s cool!  I wouldn’t recommend it!  The weight of bosoms has a purpose in keeping us from being hunched over. After, years, the area is sunken, the shoulders hunch more.. rather than being straight. A close friend
added prophylactic mastectomy and finds the same postural changes. A qualified breast prosthesis fitting person should even the sizes. I was fitted in Canberra and was very comfortable wearing
one prosthesis. I think you can make a government claim every two
years for new ones. 

Thanks Primek.

Hi EAA, glad you are getting an ultrasound- always best to rule out the big ‘C’ which haunts us forever! Can I ask if you had the second mastectomy as a preventative measure? And how do you find being flat as opposed to lopsided?(which is me)
Tonya

Ok...I'd get to a Dr...it might actually be shingles rather than post mastectomy pain . ..one sided..burning itching and painful...watch out for blisters popping up.

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.

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 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