Hi everyone!!!! I was diagnosed with BC last year. I had DCIS and IDC......I had conserving surgery partial mastectomy with a flap reconstruction done......I had my yearly follow up in June this year and the mammogram and ultrasound picked up a mass....I had the biopsy straight away and it didn't contain any cancer cells......It was necrotic tissue. So I had to go back to Breast surgeon 3mths later which was last week....She said I was fine....I saw my radiation oncologist the day later for my routine check up......He told me I have radiation fibrosis syndrome.......I have pain daily and have trouble with the tendon at the front of my arm pit and pain in my arm, breast and left side of my breast. He told me it wont get better but will probably get worse and if I can't handle the pain he will give me medication which settle down the inflammation in the under lying cells which were damaged through the radiation. I was wondering if anyone out there has had this and if anyone knows if I should just have the whole breast removed.....I would be grateful to hear from you.....I don't like the idea of living the rest of my life with daily pain and restricted movement in my arm. Thank you :)

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!

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

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.

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.

@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.

Radiation Fibrosis Syndrome