Lymphedema in the chest wall

Posted by katrina123 @katrina123, Sep 2, 2020

I just got back from my oncologists office and I found out that I have lymphedema in my chest wall. I was surprised because I had always thought that breast radiation lymphedema was only in your arm. I will be starting physical therapy shortly.

I was just wondering if any of you have had this and I was curious as to what your symptoms were and what treatment was used to get rid of it. I would really like to hear from anyone who has gone through this.
Thanks
Katrina123

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@katrina123

jdriver,
Oh my gosh you have had this for seven years. I am so sorry that you have endured this for so long. I had a lumpectomy but I didn't have my lymph nodes removed but they were radiated. It sounds like ours might be similar. My arm is not swollen but I have some swelling in my breast and terrible pain in my chest wall. It hurts to lift my arm and I finished radiation in the end of April. I will have an ultrasound and a mammogram in a few weeks to make sure that nothing else is going on.

I have a difficult question to ask. Have your doctors said that the lymphedema is permanent?

Thanks for all of the information. I am appreciative that there is a place I can go to ask questions.
Katrina123

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So this is what my lymphepress looks like. I only have the problem on my left side. It is very comfortable and I usually watch tv while I do this. Takes about an hour. Hope this explains better.

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@jdriver

PS. This is not something you get over...... just manage and hopefully not get any worse.

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jdriver,
That's what I was afraid of. I guess I will just take one day at a time and do what ever is suggested.
It seems like every time I turn around there is something new to contend with.
Thanks for letting me know that it is not always constant.
katrina123

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@jdriver

So this is what my lymphepress looks like. I only have the problem on my left side. It is very comfortable and I usually watch tv while I do this. Takes about an hour. Hope this explains better.

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Thanks for the info.
katrina123

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I too had lymphedema of the chest wall and left arm. At first they didn't recognize it and didn't get me treatment. Cautionary tale......get the treatment and stay vigilant with it please. I now have massage and physical therapy and do all my exercises and swimming (which seems to really help). You may need other treatments as well. Because I wasn't aware of the severity of my lymphedema imagine my surprise when I got cellulitis and went into septic shock a year ago November. Nothing to be ignored or pushed aside. It's important to push for proper, on going treatment. Hugs to you!

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cindylb,
I probably should have mentioned my pain sooner but I thought this was normal after radiation treatment.
I am scheduled for physical therapy tomorrow and I found out that the therapist specializes in lymphedema and teaches other therapists. So that’s good.
My pain is primarily in my chest wall.
Cindy, could you see the swelling? Did you also have pain in your breast? Could you possibly tell me what the symptoms of cellulitis were?
Maybe we both should have been warned more about this possibility.
I am starting to realize the seriousness of this. Have you ever found a site that has details about chest wall lymphedema?
Thanks for the warning.
Katrina123

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To Cindylb, The National Lymphedema Network has a website lymphnet.org. You may get some answers there. Best of luck with your PT. Sounds like you are in good hands!

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Katrina123, see above post from me😍

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@betsyk

To Cindylb, The National Lymphedema Network has a website lymphnet.org. You may get some answers there. Best of luck with your PT. Sounds like you are in good hands!

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Thanks betsyk. I will go to that sight tonight. Tomorrow is my first physical therapy appointment with a lymphedema specialist so maybe the site that you suggested will alert me as to what questions to ask at my appointment.
Thanks again.
katrina123

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I developed lymphedema in my left breast 2 years after lumpectomy with intraoperative radiation and post-surgery radiation I have been getting lymphedema physical therapy for 3 months it feels like bar of soap is in my breast I also have a strange quarter-sized scab like presence have the surgery site which is slightly sore I have had mastitis twice and and just now finishing two powerful antibiotics. Has anyone had anything similar? I am being fitted for a pump. Any recommendations. Thanks

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@mlk9
I keep telling my family it feels like a chunk of cement. On top of that I have axillary webbing (cording) three times now. Finishing up with my physical therapist who suggested I get back to wearing the swell spot under my compression bra. What a difference that has made in that "cement" area as well as axillary webbing. She explained the radiation causes scarring which presses on lymphatics which causes the axillary webbing and/or lymphedema. The numbness in my arm has gone down and the "cement" area in my breast has softened up. She explained the swell spot helps the lymph system flow out. Here is a site that shows what it looks like, but the can be purchased anywhere (with my medical plan, they are covered): https://www.amazon.com/SwellSpots-Breast-Swell-Spot-Small/dp/B07QV9KRYB/ref=sr_1_7

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