Radiation Fibrosis Syndrome

Thank you ladies for your comments.....I have a wonderful lymphodema physio who I have been seeing since my surgery last year.....I have not had a problem with lymphodema but have had problems with the "cording"...this has now settled. Cording is not the same as "radiation fibrosis syndrome", Sister.....My radiation oncologist said the damage that is done causes shrinking and hardening of the tissue, tendon and muscle tension and inflammation of the underlying cells. It can not be cured only managed in regards the pain. He also told me that only 2% of women get this. I just wondered if having the rest of my breast removed and all the necrosis removed, would it make a difference....I will have to ask my oncologist and surgeon about that. Thanks again for your input  :)

Is this the same as the cording that you can get after surgery?  If so, maybe an oncology physio who does laser therapy can help you.

@Annski agree. Lots of talk about how treatments have come such a long way (which they have in terms of survival) but far less regard for the unwanted side effects both short and long-term.
Going to ask my radiation oncologist about radiation fibrosis when I see him today.

I agree with you @Annski. No one ever spoke to me seriously about long term side effects with the exception of my BS, who touched on a couple. They do focus on survival first and foremost.

Hullo @Angel61, I had full mastectomy November 2017, recovered fine, no pain or swelling (after major node clearance) then 6 weeks radiation and now 5 months later have exactly the same as you. Nobody has ever given it a name but radiation fibrosis makes perfect sense. I doubt that further surgery would do anything to help. I have to stretch a lot every morning in the shower and often wake up with the discomfort/pain during the night. If your specialist can give you something to assist the cellular inflammation, try it. I haven't had any interest from anyone about this. Physio is only interested in lymphedema which I don't have. Right through this BC experience I have got the impression that all they care about is your survival. Quality of life ... Well, make the best of it if you can. There is no real effort to make it clear that you will suffer unspecifiable disabilities and just have to put up with them. You will never be the same. It has taken me a long time to come to terms with this and although I am grateful for being as well as I am and having some time still to do things I value, I do think there is far too much waffle and not enough simple honesty about the consequences of treatment and the extent of the unknowns. I hope things get better for you soon!

Oh, forgot to say, the pain I get in my breast is worse than my shoulder, and I've used a cheap TENS machine that I bought in Aldi, which worked well. 

Hi @Angel61. Sorry to hear this has started. I had my treatment around 3 years ago. Doing great with range of motion for about the 18months. I had kept up my post surgery movement exercises for around 9 months. I did develop lymphoedema very early, both arm and breast,  so put a lot my discomfort down to that. My lymphoedema physio has been working on my shoulder for the last 12 months. I have stretches and exercises to do,  generally keep my movement going. The areas you have pain sound identical to mine, which my physio has long said was from radiation damage.  Maybe look up the Australian Lymphology Association website, see if there is a therapist in your area. I wouldn't trust anyone who doesn't have a good understanding of lymphoedema risk touch my shoulder, as they could potentially do more harm than good.
Take care