Radiation Induced Fibrosis

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  • Eigna
    Eigna Member Posts: 438
    edited September 2020

    Abbidoodle: Question: how were you diagnosed with fibrosis ? Did you do a mammogram? US? What are your symptoms?

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  • Abbidoodle
    Abbidoodle Member Posts: 41
    edited September 2020

    Eigna... My symptoms have been red, warm breast, quite painful, swollen and hardening of the breast, hardening of skin all over breast, the side of breast extending to my rib cage and hardening on the top of breast,going up towards my neck. If I move my arm certain ways, I get sharp pain that feels like a muscle spam and it radiates through my chest to my back. Thank goodness it eases of after a few minutes. My radiation oncologist diagnosed it as lymphedema with extensive fibrosis, due to radiation.. I've had several US. Lymphedema therapist agrees. Infection has been ruled out.

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  • redhead403
    redhead403 Member Posts: 125
    edited September 2020

    I did radiation over an implant and was told that no matter what, I would have some fibrosis to the skin of my breast. I started the pentoxifylline and vit E after finishing radiation in February. I added montelukast, not knowing that it would help with fibrosis. I started it in may or june for allergies. It seems I do have some fibrosis but not very much.

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  • fifthyear
    fifthyear Member Posts: 225
    edited September 2020

    my experience as well, something like internal cording radiating from the rad site to upper chest and back, especially if i move my torso in a certain way. Stop breathing (it's that painful) for few sec and be still it goes away after few minutes, sometimes longer. Not sure what can be done about it. The gift that keeps on giving, I am happy to be alive but would like to have better QOA.

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  • Abbidoodle
    Abbidoodle Member Posts: 41
    edited September 2020

    Hi fifthyear. Thank you for your response. I understand the "take your breath away" pain. I think if I had been more prepared for the effects, I wouldn't be as upset about all this pain. I was told (and even read) that the side effects were sunburn like skin, fatigue , and possible lymphedema in my arm. No mention at all of breast lymphedema or fibrosis. Trying to stay positive, but it's not easy day in and day out.

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  • fifthyear
    fifthyear Member Posts: 225
    edited September 2020

    @Abbidoodle, yes the trying to be positive thingy is easy to say than done:-))

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  • Beclyn20
    Beclyn20 Member Posts: 30
    edited November 2020

    Hello Abbidoodle... When did your symptoms get bad? I am a little over 2 years out from radiation and your symptoms sound like mine. This is NO fun. Feel like I have hockey puck in my breast. Happy Thanksgiving!

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  • Abbidoodle
    Abbidoodle Member Posts: 41
    edited November 2020

    Happy Thanksgiving to you also. I believe the lymphedema started shortly after surgery, was diagnosed incorrectly so no therapy started. By doing nothing a year and a half it steadily has gotten worse. The biggest change was after radiation, which I believe started the hardened fibrosis. I am now being treated for sores that developed under my arm and under that breast, due to the skin being stretched so tight it is breaking. Extremely painful! I have recently saw a breast oncologist here in NC at Duke who has given me some hope that this can be helped. Let me know how things are going for you.

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  • Beclyn20
    Beclyn20 Member Posts: 30
    edited November 2020

    Thanks Jo! Your journey sounds horrible. I think I have scar tissue and fibrosis and the thought of having it biopsied makes me shudder! Can I ask you when it started to get bad? I am about 2 years out and noticed the last month that it is worse. I am on verge of menopause so thinking that might have something to do with it. No fun. Thanks for sharing your story Jo!

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  • Beclyn20
    Beclyn20 Member Posts: 30
    edited December 2020

    Hi Jo. I can't imagine anyone knocking into my breast. Some days really tender. My lump is at upper right where the tumor was removed and radiated. Seems like it is pressing into my chest muscle which is making it worse. My scar was on nipple line. Not sure if I have issue there because all the problems coming from radiated area. I really regret radiation but too late now. I am hoping that some day it will just stop reminding me it is there. My breast does not appear to be shrinking at this point. Just feels swollen and painful. Thanks for sharing.

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