Radiation for breast cancer with Ehlers Danlos (Hypermobile/ Type 3)

Posted by susie757 @susie757, 2 days ago

Does anyone know about effectively treating radiation fibrosis in Ehlers Danlos patients? I am already 13 weeks post mastectomy with significant scar tissue and cording. I have been doing physical therapy for months now with a PT who specializes in breast cancer/lymphedema (so, stretching, laser, massage, etc). Radiation is recommended for me due to a 1mm micrometastases in one lymph node. (My breast cancer is IDC, grade 1, 43mm, hormone positive, HER2 neg, oncotype score 11, post-menopausal). There is currently a study being done to figure out if radiation is even necessary in my case. I am seriously considering skipping radiation because I'm concerned radiation will cause more damage on top of my current tightness/scarring/ cording and that it may pull on my joints, leaving me with more chronic pain. Or damage my skin/ scar line... I already have broken veins on my chest, in addition to the tightness from the cording.
Has anyone successfully recovered from radiation in a case like mine? I want to know there's treatment before I gamble on this risk of permanent pain. Radiation would also increase my risk for lymphedema...
I was diagnosed with EDS after a simple foot injury failed to heal properly, so I know my body has trouble healing from injury. But I don't know if my oncologists fully appreciate this. I wish I had an EDS specialist on my team!

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