Hello,
I am 53yrs and was diagnosed with Invasive Ductal Carcinoma (IDC) in May 25. I had a lumpectomy and SLNB in June. Histopathology: ER+ (95%); PR+ (2%); HER2 neg; Ki67 10%; N0 (node neg); I had two further surgeries. One for a bleeding complication and the other for a re-excision of the anterior margin. Histopathology: Clear margins.
I 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 on this forum to date. 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. At present I understand the prescription is 40gys (dose) in 15 fractions (sessions).
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. Intensity Modulated Raditation Therapy (IMRT); Volumetric Modulated Arc Therapy (VMAT) with/without deep inspiration breath hold (DIBH). I think this is the standard treatment.
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
I think your risk would also depend on how much radiotherapy they are planning to give you. I had 19 fractions, about 48 Gy’s total, so quite a lot. It was on the right so no need for breath hold. Had cording happen twice after - none since last March and some breast oedema. Nipple skin was most sore, over weeks a thick yellow skin coated it which came off eventually. Also some excoriation under bust line, that went in time. Ok apart from that.
If you got clear margins, you won’t need as much as I had.
I had 5 sessions 26gy in total in the supine position on my right side ( so no breath hold ) to my whole breast . I’m not sure what IMRT / VMAT mean.
You haven’t given your age or what type of cancer you had and whether or it they were happy that they got clear margins but people with lymph involvement / haven’t been able to get good margins / younger / more aggressive cancers tend to be recommend to have a higher dose.
Sometimes it’s not clear which dosing protocol will be enough so if there’s any wiggle room on that score then ask for the one with the lower dose. It’s a good thing that they are aware of it - it sounds as though they will be taking extra care with you if you decided to go ahead . I had a phone call part way through my treatment to discuss how I was feeling and the staff assessed my breast at the start of every treatment .
After each treatment I felt a bit off - as though I had worked a night shift. After a sit down and a coffee I would be ok for the rest of the day. I had a 2 day break over the weekend after the first 2 treatments. My breast started to become red after those first 2 but only on the inner slope and the nipple . My last treatment was a Wednesday and fatigue kicked in on Saturday of the same week - it was really bad for 3 or 4 days , very slightly better for the next 4 then a slow improvement . For the first 10 days I did experience nausea which was definitely related to the fatigue .
Some days I felt fine then started to do something and just had to stop or would have a day when I was just off it but then ok the next day - this lasted maybe 3 months in total .
The redness in my breast took a good 6 months to go but my skin did not break down . My breast was also swollen - I was not concerned as it was improving albeit slowly but my BCN was when I saw her in clinic . The reason I went to clinic was that I had found another lump which turned out to be an oil cyst - in the end both the swelling and the oil cyst absorbed on their own. The oil cyst was a complication of the surgery rather than the radiotherapy but it started off as fat necrosis which my body then saw as something invasive and turned into a cyst . Maybe the effort of doing that might have added to the fatigue I don’t know.
I pulled a muscle in my side doing Yoga after treatment - I’ve done the exercises diligently and still make sure to stretch my right side - it’s probably slightly tight as compared to my left but I probably only notice it when I’m doing Yoga stretches.
I’m over 3 years down the line now and I’m not aware of having had any other complications - I have high blood pressure and mature inset asthma so I did have my concerns . I had an episode of fatigue earlier this year that worried me but it turned out to be just a virus .
I was determined to go through with radiotherapy as I had a feeling that I might not manage the 5 years of hormone therapy - I was right I only lasted 5 months .
If you are ER / PR positive get them to do your Predict score with and without radiotherapy if you haven’t already . Look at other scoring systems too . If you know or have access to your Pathology report you could go through it yourself though I do feel it’s best to have a medical professional with the right experience to do this with you to get a true perspective. You could call the Nurses on the helpline here as well . Xx
Hi Entropy,
Appreciate your sharing your experience. Happy to hear it resolved in time. I still have cording from the SLNB so currently working on relieving that and some residual nerve damage in the armpit.
Thank you 
Hi @klio44
I had lumpectomy for IDC and had total node clearance as 5 nodes were also involved. So I had chemo then 15 sessions of RT (Mon - Fri for 3 wks). Think I had VMAT and was lying on my back-right side so no breath holding needed. Felt a bit tired but otherwise felt well. A few weeks later, I developed 2 burns on my chest-looked like sunburn and only a little sore. Faded after a few months. Thought I didn’t have any long term side effects but I fell over and broke my pubic rami and cracked some ribs- the X-rays and scans showed that I had a nodule on my right lung. After further scans, it was decided that the nodule was due to the RT. Right breast was also lumpy/bumpy for a while but that’s settled too (2 yrs since RT).
Hope this helps u make your decision xxx
Hi Joanne,
Thanks for detailing your experience. I was really happy to hear that your symptoms have resolved for the most part but it is clear that in general, the oncologists do not share a comprehensive list of immediate or late onset effects. At this centre they refer to fatigue as '“mild energy changes”. The fact that they have let me know I am at higher risk of fibrosis was appreciated so I can research the outcomes and have the choice of making an informed decision.
I too was relying on the RT as I suspect I will be also be intolerant to the endocrine therapy. I am very sensitive to medication with a host of allergies, sensitivities and adverse reactions. Adding the side effects to my existing hEDS related physical and mental burden seems daunting. Without RT however I would need to give this a go for as long as possible.
Thanks for highlighting the acronyms and information it may be helpful for me to include in my post. I have edited the post accordingly.
I wish you positive healing energy Joanne.
Klio 
Hi Moobloo,
Thank you for letting me know the details of your RT and the effects you have experienced. Relieved to hear that the effects have faded and settled and that you are following-up the scan results.
Sending you positive healing wishes moobloo.
Klio
Just occurred the me I’m not sure I made it clear but my high blood pressure and asthma were not caused or aggravated by radiotherapy - they were pre- existing conditions . Xx
Thanks for letting me know xo