Capsular contracture post rads

Jcdd

I was diagnosed in July 2016 with late stage HER2+ at the age of 39. I went through chemo (ACx4, taxol/herceptin/perjeta x 16), had mastectomy with full ALND (non nipple sparing with TE's), then did 6 weeks of proton therapy (participated in clinical trial) radiation to chest, axillary, supraclavical, and boosts to internal mammary nodes (which were cancerous and couldn't be removed ay surgery). I continue with the H/P immunotherapy.

After mastectomy/ANLD surgery, i developed severe cording from the lymph node removal, so bad that i could barely get my arm overhead for radiation and it was pretty excruciating. Then, after radiation, which finished in April, I developed severe capsular contracture of the tissue expander and surrounding tissue. The skin looks good but the underlying tissue feels like its completely adheed to my ribs and thr TE is totally "stuck" in place. I am eligible to have exchange surgery in mid- november (7.5 months post rads). I am not a candidate for diep, etc because I'm 5'6 and about 115 lbs (ive lost a bit of weight during this journey and its a struggle to keep weight on).

If you had capsular contracture post rads, did it return after exchange surgery? Anything I can do to help it? Does masssage help? Ive been doing PT, but it doesnt really help with the CC. Would it be better to wait longer for exchange? I desperately want to be rid of these painful TEs ive been carrying around since January. Any advice appreciated.

CEL82

I would love to know too!

I had a NS DMX Dec 2016, already had my implant exchange then 3 months after recon was complete I felt new lump adjacent to initial palpable mass. It was residual cells/ recurrence and now I am going to have radiation.

I am worried about CC post rads too. I have already had 5 surgeries in a year

I have heard that CC capsule can be manually broken, or removed. I think you will be at higher risk for getting it again, but there are things the PS can do to reduce your risk: wrap the implant in alloderm graft, pre-pec placement, and singulair medication is in studies to reduce CC too.

My RO is requesting proton therapy too but is having a hard time getting it approved through insurance. Cigna. I am getting a case manager tomorrow and my case is in appeals right now. My RO already did a peer to peer and submitted the info they wanted for the appeal (IMRT vs proton mapping) any advise on getting proton approved?? What trial were you in? Do I ask insurance or RO about this??

Thanks!