I have recently attended consultations with two radiation oncologists (RO). I was advised that I was at higher risk of developing radiation-induced fibrosis (RIF) as I have a connective tissue disorder - Ehlers Danlos Syndrome (hypermobile subtype hEDS). I also have exaggerated inflammatory responses and multiple allergies - suspected autoimmune issues.
I assumed that the term fibrosis was referring to tissue fibrosis but after some research have come to understand that this also includes fibrotic conditions of the lungs in varying degrees.
Thank you to everyone who has posted regarding their experiences with RIF. Given I am at an increased risk I have asked to delay the RT commencement date while I weigh-up the risk of local recurrence against the risks associated with the potential late effects associated with RIF.
It is already a daily struggle living with hEDS so am taking some time to carefully consider my options. I have completed the CT planning scan for the treatment and have an appointment with the RO on Monday.
I would like to invite forum members with/without connective tissue and/or autoimmune disorders to share their RT outcomes. It would helpful to include if possible:
1.Type of RT e.g. IMRT VMAT with/without deep inspiration breath hold (DIBH)
2.Total dose if known and number of fractions (sessions)
3.Immediate side effects e.g. pneumonitis; nausea; swallowing pain; burns; blistering; none etc.
4.Late-onset effects e.g. pulmonary fibrosis; tissue fibrosis etc.
5.Treatments (prednisone etc) and outcomes
6.Right, left or both breasts
7.Prone (lying stomach) or supine (lying back) position
It would also be helpful to know if anyone chose to omit the RT and why.
Thank you all in advance. I am finding the decision-making process difficult and any information you can share would be very welcome.
Healing wishes 
Klio