Cording and Ribs Discomfort Post Mastectomy-chemo- radiation!

dpms
dpms Member Posts: 26
edited June 2014 in Pain

My mom had a modified radical mastectomy on her right breast on December 10, 2012. She had stage 3A breast cancer. 

She has now completed her Chemotherapy which consisted of the ACT regiment, and just last week finished her radiation. 

Since even before her radiation she had started to experience EXTREME tightness on her chestwall which of course only got much much worse during radiation. She said it feels like she is wearing an iron bra that is 3 sizes too small and just pulling at her chest.

After being passed around from one doc to another, an excellent physical therapist found that she had developed major scar tissue and cording that goes from her underarm to about the middle of the incision on her chest wall. 

We have been told PT can help break the cording, but it seems my mom's is deep set. We have recently learned that surgery (after 6 months) may be an option. Has anyone else heard of this? Where a breast plastic surgeon can go in and clean out the scar tissue and break the cording to give a release to all the tightness. 

Has anyone else had this done? If so, how did it go? How did you find the surgeon? Were there any side effects/risks to this kind of surgery? 

Also towards the end of the radiation, and more so now, her ribs feel like they are poking her in the underarm area, and just making her feel like her arm is caught between the ribs? We were told that the radiation has thinned her tissue hence that is why she may be feeling this? is it true? Also because of the cording/scar tissue, her shoulder is being pulled down, and she feel like her arm is now resting on her ribs... 

The ribs have become a new cause for immense discomfort all the time. 

Between the excuricating tightness on the chest wall and the ribs, my mom feels depressed, like she is handicapped, and in 24/7 pain. 

We feel so frustrated, and hoping we may find more answers here. The doctors arent very helpful, unless we ask the right questions and really be proactive. Would love to learn from your experiences. 

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Comments

  • Tomboy
    Tomboy Member Posts: 3,945
    edited October 2013

    i am sorry for your mother that she is experiencing this. Good for you for finding us all here! your letter caught my eye. I have heard that myofacial release of scar tissue is helpful for the cording and scarring. if your mother is like me, She probably doesn't feel like she wants to undergo another surgury, even if it might be helpful. I remember I shuddered at the thought of them going back into my breast to clean up a huge hematoma that had developed. OOOOOooooh, NOT! I definately do not care for any surgury, unless absolutely necessary, so waited a long time for that to mostly resolve on its own. I did have a little bit of cording, once, that my therapist (much beloved woman) was able to help fix. I am not sure what exactly caused it, but I think it is lack of excercise, because of fear of pain, or further damage we might unwittingly incur. Yeah, and radiation has caused me to never forget my breast is there. Lets just say it is sensational. And my ribs, since surgury, have always hurt. It is what bothers me most. My doc, whom i see tommorrow, is trying to get to the bottom of that. I will let you know what he says about rib pain when I get back from there.

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  • dpms
    dpms Member Posts: 26
    edited July 2013

    Hi Kathec, 

    Thank you for your response! My mom has tried myofascial release. But it wasnt quite working. She also feels her cording has formed due to lack of exercise in the beginning. The doctors had only told her to exercise till she got full range of motion. Which she did after 15 days, and then didnt think to continue as her chomo had begun. 

    Though my mom is apprehensive of surgery, she is all for it if it help with all her tightness and breaking the cording. We have read a few cases where surgeons have gone in and carefully broken it, and the patient has felt the immediate release. Have you heard of this? How it works? risks? 

    None of our doctors have said that ribs get affected from radiation. But just by googling and checking forums, it seems to be a common issue! Not sure why its not being addressed. 

    Thanks for letting us know what your doctor will say. We are curious to understand how to resolve that issue and get her some comfort as well! 

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited October 2013

    what i have heard about scar tissue is that the surgeon can cut out the scar, i guess leaving a better scar? but i have never read or heard about them dealing with cording. maybe some of the other ladies know? even tho it is not lymphedema, it often comes after alnd too, and i think that the lymphnet.org has a category for that, so that you might find out more. good luck. i dont know why about rib pain after radiation, except it just causes changes on a cellular level. some women just get different side effects than others with all of this stuff. Good for you for trying to find out all these things for your mom. youd think you could just ask a doc.

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  • NatsFan
    NatsFan Member Posts: 3,745
    edited July 2013

    For more information on cording and the possible later development of lymphedema, check out Step Up Speak Out - a website about all things related to lymphedema.  http://stepup-speakout.org/

    Here's the specific info about cording:  http://stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm  This page concentrates on axilliary cording, but applies to all kinds of post-surgical cording. 

    I'd be extremely leery of anyone doing further surgery to deal with cording - I'm not an expert but I've never heard of that, and further surgery in that area just increases the risk of triggering lymphedema.  My best advice would be to have your mom schedule an appointment with a Certified Lymphedema Therapist, not just a PT who may or may not be familar with lymphedema.  Step Up Speak Out has a page on how to find a CLT:  http://stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

    Also, I'd strongly suggest that you post this inquiry in the Lymphedema section of BCO.  There are some nationally recognized lymphedema experts who monitor that thread and post regularly - they could give you some excellent advice. 

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  • CarrieFitz41
    CarrieFitz41 Member Posts: 8
    edited August 2013

    Thank you NatsFan for this helpful info! I am 11 days post BMX surgery with 2 nodes removed and I developed cording over the past few days. Very painful and very limiting. I am seeing my BS tomorrow to get info on local therapists but will also check out the sites you have provided.

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