radiation therapy causing painful fibrosis of the breast

You don’t say how long it has been since you finished treatment. The left side of my chest was all those things. Immediately after radiation it was just a massive open sore and very hard. I did the salt water soaks and kept it covered with dressing and took pain killers until the skin healed. After that I continued with the sorbelene cream each night and wore the swell pad in my camisole each day and the physio treated it every few weeks. It didn’t take long before I didn’t need to take painkillers anymore, maybe a few weeks. The redness went not long after the pain. The swelling took longer to go down, more like months and the firmness eventually lessened. It is still harder than the other side but not rock hard like it started off. All up I would say about 12 months of physio until I thought it was about as good as it would get. I still wear the swell pad but no longer do the daily massage unless it feels swollen and is bothering me.

I’m doing fine. My breast cancers were quite small but much more aggressive in my axillary area wrapping around the nerve going down my arm. The surgery caused lymphedema and restricted movement to my arm which improved and then worsened with chemo and then radiation. I resigned myself to physio forever just to keep mobility and swelling to an acceptable level. I had herceptin for 9 more months after radiation. A few months after finishing herceptin everything seemed to fix itself. My lymphedema has gone, my arm mobility is fine. I still get tingling down my arm when hyperflexing my wrist so it’s not 100% but it certainly doesn’t bother me anymore. My chest looks fine. It is a little darker and firmer than the other side but does have softness to it. I didn’t do reconstruction as I didn’t want more complications and am happy flat. My whole body was a mess from treatment but it has recovered although I have had heaps of physio and daily self care which I don’t need to do any more as it all seems fine. Now I’m working on trying to recover my fitness which is a hard slog. I’m still on neratinib until the end of the year and expect I will struggle with my fitness until it has cleared from my body. I’m at high risk of recurrence so have had extensive, aggressive treatment. My body seems to have bounced back. I just hope it’s been enough to keep the cancer away. I know what it’s like when your body is a swollen, burnt, toughened mess and it feels like there is no way you will ever be normal again. Even the specialists didn’t offer much support when it didn’t look any better after a few months. Try and keep a positive attitude, keep up the self care, spend a fortune on physio and give your body a chance to heal itself. I hope it improves for you.

All the best Sora

i have very bad fibrosis from radiation as well. finished an aggressive course of proton therapy last March 2017. I am stage 3C, her2+++. I had expanders switched to implants in February and i was really hoping that i would bring releif, but nope. Underneath my arm and into my armpit, my tissue has hardened into a rock and it totally adhered to the ribs. It does not move. I now have patches on my upper foob and in between foobs and underneath that have also hardened and adhered to the bone underneath. Literally will not move. The radiated foob also has scar tissue from surgery and capsular contrature. It is very painful. I have been to everybody about this. The thing is, radiation fibrosis is different than just normal post surgical scar tissue. I am doing PT, stretching and a deep tissue like massage where the therapist is working to try to free the adhesions off the bone. I spoke with the radiologist and right now, there is not mich else to do. Ive heard about hyperbaric oxygen but was told to stay away because its contraindictated for cancer. I was told the best bet is to have a flap surgery where they can remove some of theradiated tissue and replace with real living tissue.

I feel like you - desperate for something to help. The deep tissue massage has been the only thing so far that is really doing anything