Radiation Induced Morphea of the Breast

hi everyone!!!

last fall I was dx'd with radiation induced Morphea 8.5 years after my last treatment. I am currently seeing a radiation oncologist, who has only seen this twice in 20+ years. It is fairly rare and because it is, there are not any tried and true treatment options. I think this may be because a lot of us are living longer after treatment. (Which is a good thing!!)

My morphea has a cycle. My skin in the lower half of my breast & about two inches below the breast feels like it has a bad sunburn. Kinda like when we first were treated. Then the skin will bubble up and peel, again, just like a sunburn. Once it peels the skin underneath is highly sensitive and painful. Or I could end up with open lesions that take a couple weeks to heal. Then the cycle starts again. The whole thing is terribly painful. Much worse than the original treatment. I cannot wear a bra. I wear a sports bra with large bandages if I need to go out. I have had breast cancer 3 times, I have chemo induced heart failure and now this!! Anyone have morphea, to??? Looking for any tips on how to live more comfortably.