Radiation Induced Morphea

jlynnbr

I was just diagnosed with Radiation induced morphea and curious if anyone has experienced this?

PezGal

What does it look like/feel like? I got rads in May 2016 and I'm STILL sore and red and kind of bruised looking. Everyone (MO,RO, PS) says "well thats not normal. Not sure what it is." and then moves on. No one is alarmed but me. What does it look like/feel like?

jlynnbr

It's a little hard to describe but it sounds a bit like what you are  are saying.  It started just after I completed radiation treatments.  There were 2 small red patches of skin on my upper back in the middle and near armpit.  One was just flat red and the other was a little lumpy.  At the time my RO and physical therapist just thought it was irritated muscle from all the treatments and surgery.  The patches of red/pinkish skin began to spread down my side and around to my abdomen.  The patches grew so it almost looked like one large area of the rash.  But, then older areas of the rash began to look more like a bruised color and the newer areas more pink.  It was sore when it first began, like my skin was really tight in that area, it sort of had the appearance of sunburned skin and slightly swollen...and sometimes when a new patch was forming it tingled a little.  It's hard to compare to pictures of it on the internet because I think it changes over the course of time,   

Anyway, same as you, no one could figure out what it was.  I saw my RO, MO and surgical oncologist.  My RO did not feel it was anything related to radiation as the rash was outside the radiation field. Finally, my MO suggested I have a ultrasound done to make sure it wasn't any cancer returning (he didn't think that's what it was but just wanted to be sure).  The ultrasound radiologist didn't know what it was either, but was confident it wasn't cancer and felt that it could be lupus or some other connective tissue disorder.  She recommended I see a dermatologist.  So, I saw the dermatologist and he wasn't sure what it could be either, but he did 2 punch biopsies.  The results came back showing nothing really other than something called telangiectasia and he had them do a FISH and that came back negative (that was a relief!).   So, they had me come back to do another biopsy.  This biopsy came back saying radiation induced morphea.  It is a form of scleroderma and I understand there are may different forms, this is a localized form so nothing to be too worried about.  I have read that it is rare and not too common, but more likely to occur in women who have had radiation from breast cancer. I guess it also typically occurs in the radiation field  (mine is outside of the field but near). 

I hope someone can figure it out for you, maybe a dermatologist can help make a diagnosis for you.  It's relief that after 10 months or so I finally know what it is!   Keep me posted!