Anyone been treated for radiation fibrosis?

Hey there my friend! I have fibrosis along with my breast/nipple lymphedema. Therapy for me in the beginning was weekly PT visits with a Lymphedema/Cancer specialist. These visits were one's where she physically manipulated, stretched, massaged the fibrosis and lymph affected areas.

At the start therapy was painful. Eventually as things progressed it became less so. Only aching for a day or 2 afterwards instead of feeling like fire for a few days.

I also have to do manual lymph massage and stretches/muscle manipulation at home twice daily. Its time consuming in the beginning but it did help for me. The fibrosis is still there, but it's less painful and softer. If i keep up with my at home PT and range of motion exercises most of it's manageable but still its gonna be adaily life long thing for me. Nearly 20 months out from RADs and still this is my "thing".

Hope you have a good first visit and that it's helpful. This was just my journey with this stuff, may yours be less frustrating and fingers crossed short term.

Yeah that pain is something they don't really tell ya about, its a different beast. At the very least I hope your MO will send you for a evaluation to see if Cancer Rehab PT would be beneficial for you. Another thing that helped me was Acupuncture. I was surprised my Medicare covered it. I think there are also some studies out there about liquid Vitamin E that can help with fibrosis. In my opinion if it can't hurt, gimmie! Lol. Keep us posted. (Great timing that I logged on today to see this post of yours. Not often much due to lack of "spoons" but so very Glad I could help a bit.)

Any news my friend? What did doc say? Hope something positive is a foot. Hugs.

I'm sorry for the delay, but hopefully there will be positive news coming your way after that appt.

Thanks for asking after me. Wish I had good news. None here. 2020 continues to be as awful as 2018 and 2019. Gonna post a thread soon. Had a HORRIBLE MO appt yesterday for 2 reasons. One is that I need to find a new MO, her comments to me were unforgivable. Two, due to breast pain in my LUMPX site for the past few weeks she ordered me to have a Breast US and 3D mammo sooner than next month. So next week I will be in for those and hoping that the cancers not back. Very sweet of you to ask though. So wish I had good news.

I had a pet scan a few days ago and got my results back. My report suggests radiation pneumonitis. Sub/pleural patchy opacities in the right anterior lung. This I don't think is fibrosis but the beginning of what could be.I have a prescription for 7 days of predisone.

I also have questions about my pet scan because I don't know how the technician got my glucose level because it was never tested. I remember wondering why the meter with strip was just sitting on the table and never used, but I didn't say anything because I thought he must know what he is doing. Also during the procedure the whole syringe of whatever he injected was not used because he pulled it out quickly and dropped it on the table and I could see the clear gel still inside the syringe so now I am concerned about the accuracy of the test. I had rib pain and during my first and previous scan there was uptake in the rib and this one diminished with slight sclerosis and morphologic irregularity suggesting likely healing fracture. There was no mention of any fracture on the last report but uncertain etiology for the uptake. Not sure what to do or where I can find more information. If the test was not administered correctly it is a hell of a lot of wasted money and possible skewed results