Post Radiation Fibrosis...help

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Kelsteff
Kelsteff Member Posts: 1
edited October 2018 in Radiation Therapy - Before, During, and After

Hi, I'm Kelly. I was dx with Stage 2B IDC April 1, 2014. I had a double mastectomy, reconstruction (with multipule infections/issues), chemo and radiation, followed a year later with hysterectomy. I am 38. I developed pretty bad post radiation fibrosis that causes pretty constant pain. I have tried physical therapy but it didn't seem to help. My question now is that over the last week I have had alot of pain on the inner part of my left arm. (Cancer and radiation side) It is only getting worse and hurts to the touch. Has anyone else dealt with this or fibrosis in general and found anything that helped. I am to the point now where I am ready to just have the implant removed but have been told that it is a temporary fix because eventually as everything continues to tighten it just goes back to hurting again but I am ready to do pretty much anything to relieve some pain. Any help is very appreciated!!

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  • Moderators
    Moderators Member Posts: 25,912
    edited December 2017

    Hi Kelsteff, and welcome to Breastcancer.org. We are really sorry to hear all you are going through with your fibrosis. Have you spoken with your physician about this, or seen a physical therapist who specializes in this issue?

    We are a few pages that could contain some helpful information for you as well to managing and treating your fibrosis: Physical therapy for pain with fibrosis, Lymphedema and fibrosis, laser therapy, Foam pads and chip bags, Pneumatic Pumps for Lymphedema

    Hang in there, and hope some of this can be helpful.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited December 2017

    Hello, Kelsteff, and welcome. I'm so sorry about your reasons for being here, but trust you'll find support and shared experience from the women here.

    As the Moderators suggest, the pain and problems you're dealing with could well be a result of lymphedema. Your history of surgeries, infection and radiation can all, unfortunately, contribute to developing lymphedema. It can be hard to get a diagnosis because many healthcare professionals know little about it, and then it can be hard to find a therapist trained to treat it, as it's a specialty beyond the usual training needed for PT or OT certification.

    If you have not been evaluated by a well-trained lymphedema therapist, that's the place to start. Any member of your medical team can write you a referral, but it helps if you know a bit about the qualifications a lymphedema therapist needs. Here's how to find a well-qualified lymphedema therapist near you:

    http://www.stepup-speakout.org/Finding_a_Qualified...

    Scarring and adhesions can contribute to post-cancer treatment pain, but an experienced lymphedema therapist should be able to deal with that as well.

    There's a forum here at breastcancer.org specifically about lymphedema. Please feel free to join us there with any questions you have. Tell us how we can help!

    Gentle hugs,
    Binney

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