Anyone experience Radiation Fibrosis? What helps?

Posted by Elle @ellenholm, Jan 28, 2023

I had a mastectomy on 12/20/21 followed by a 3 week course of radiation that concluded on 3/2/22. In November 2022 I was diagnosed with radiation fibrosis. I am wondering if the higher doses of radiation given for shorter courses, mine 3 weeks, are causing more radiation fibrosis. Anyone talked to their radiation oncologist about this aspect? Exercise does help me, but I was surprised by the diagnosis as I thought it was rare with new technology, etc. Elle

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@trixie1313

@ellenholm
You might also check with your oncologist about switching aromatase inhibitor. I was started on anastrozole and could barely get up to walk, the pains was so significant. From there I was switched to letrozole and still had problems, and finally switched to exemestane and have been doing well with that. I walk daily for exercise. As far as the hand swelling, it could be a type of lymphedema known as axial webbing which can be helped by a physical therapist who knows about lymphedema and lymph massage. I have had repeat bouts of this following surgeries and radiation and that helps considerably as well as using a "swell spot" which the PT ordered for me. It's used under your bra and helps break down fibrosis in breasts from radiation and softens the area. All the beset to you.

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Do you use the swell spot during radiation? Does it irritate your skin?

Thank you!

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@eaglewings22

Do you use the swell spot during radiation? Does it irritate your skin?

Thank you!

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@eaglewings22
No, this is something you wear once you're healed and have lymphedema or breast fibrosis and under the care of the physical therapist who orders it (at least mine put in an order for it).

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@trixie1313

@eaglewings22
No, this is something you wear once you're healed and have lymphedema or breast fibrosis and under the care of the physical therapist who orders it (at least mine put in an order for it).

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I’ve been given a swell spot from my lymphedema specialist for an area of fibrosis in my breast following a lumpectomy. Now I’m in radiation and wondering if it’s advisable to wear it during radiation. Thoughts? I’ll check in with my docs, but was wondering if anyone had continued using a swell spot during radiation. Thanks!

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@eaglewings22

I’ve been given a swell spot from my lymphedema specialist for an area of fibrosis in my breast following a lumpectomy. Now I’m in radiation and wondering if it’s advisable to wear it during radiation. Thoughts? I’ll check in with my docs, but was wondering if anyone had continued using a swell spot during radiation. Thanks!

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@eaglewings22
Because you wear the swell spot under a bra, it may not be a good idea to do it with radiation as there may be radiation burns. I would definitely speak to your radiation oncologist about this question. I had to undergo 30 radiation treatments and during all that time and afterwards, I did not wear a bra due to the sensitivity from the radiation as well as some of the burns, but I had bilateral partial mastectomies (going from DD++ to an A-(!)).

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I started with PT prior to my Mastectomy in Nov 2021 and continued following placement of the dreadful expander, radiation, and after reconstruction. I had a lot of scar tissue and cording that needed to be "broken up". I will finish PT next month, Nov. 2023. I do the home exercises daily, wear a sweet spot every night and a compression camisole daily. I finally feel that I can function without further therapy at this time. I weaned myself to twice a month since June and once a month since Sept.
I watch my diet to reduce the foods that might cause fluid retention (red meat, bacon, and most processed foods).
I was willing to do the hard work. Well, maybe not always willing, but I did it anyway. I don't know what caused my breast and under arm edema, but I know what helped. Good luck with your journey through lymphedema and too the other side.

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Hi Elle:

Hope you are still on here. Please fill us in on how you did with the lymphedema PT.

Have you gotten improvement still that time span?

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I am 77. I completed radiation following lumpectomy for IDC in my right breast 2 years ago. Now I have fibrosis in my right shoulder and just started PT. The therapist said this is not uncommon and is permanent and exercise can help manage it. I also have a dry cough. Chest x-ray and CT with contrast but still "no known cause." Anyone else dealt with radiation fibrosis and have suggestions? Thank you.

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@lakegirl99

I am 77. I completed radiation following lumpectomy for IDC in my right breast 2 years ago. Now I have fibrosis in my right shoulder and just started PT. The therapist said this is not uncommon and is permanent and exercise can help manage it. I also have a dry cough. Chest x-ray and CT with contrast but still "no known cause." Anyone else dealt with radiation fibrosis and have suggestions? Thank you.

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That seems to be a common side effect.
I have fibrosis in my breast. Be sure that you continue your PT as fibrosis puts a strain on the lymph nodes.

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@timely

That seems to be a common side effect.
I have fibrosis in my breast. Be sure that you continue your PT as fibrosis puts a strain on the lymph nodes.

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This is really helpful. Thank you for sharing.

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