Lymphedema in the chest wall

Posted by katrina123 @katrina123, Sep 2 6:08pm

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

@katrina123
I am currently being treated for axillary webbing (cording) which is a back up of lymphs in the lymphatic system. Can you get to a physical therapist that specializes in lymphedema? I was given a "swell spot" that goes in my compression bra which helps alleviate some of this. The physical therapist feels a large part of what is causing my axillary webbing is due to the radiation scarring in my breast and in the last two weeks wearing this swell spot, it is softening up quite a bit. Good luck to you.

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Yes I have been managing this for seven years. I first went to a lymphedema clinic for manual massage. They also used a lymphedema machine that helps to alleviate the swelling . I attended the clinic three times a week for about 6 weeks. All my lymph nodes were removed in one arm after my lumpectomy. I have never had any swelling in that arm but in my left breast and chest wall. It flares up occasionally and more especially in very warm weather. I actually got a Lymphepress machine to use at home. I use it periodically to keep everything in check. When it flares up I will use it daily for a few days. Takes about an hour each time. Good luck to you. Also using a compression undergarment helps a lot. I found that using any type of underwire bra made the problem worse. Hope this helps.

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I am over 3 years out and get “lumps” of edema under my arm pit and sometimes into my chest. Physical therapy showed me how to “milk” it out. It is well worth your time to learn how to do it correctly.

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@trixie1313

@katrina123
I am currently being treated for axillary webbing (cording) which is a back up of lymphs in the lymphatic system. Can you get to a physical therapist that specializes in lymphedema? I was given a "swell spot" that goes in my compression bra which helps alleviate some of this. The physical therapist feels a large part of what is causing my axillary webbing is due to the radiation scarring in my breast and in the last two weeks wearing this swell spot, it is softening up quite a bit. Good luck to you.

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trixie1313,
My oncologist did mention that there was someone who specialized in lymphedema. My oncologist did my breast exam at the end of a 45 minute office visit so when she mentioned lymphedema and P.T. I wasn't mentally prepared to ask questions. I will be better prepared to ask the physical therapist some questions. This is upsetting to me. I have had 5 surgeries in 3 1/2 years and lots of physical therapy so to have to start this again is disconcerting.
Thank you trixie for your well wishes. I appreciate it.

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@katrina123

trixie1313,
My oncologist did mention that there was someone who specialized in lymphedema. My oncologist did my breast exam at the end of a 45 minute office visit so when she mentioned lymphedema and P.T. I wasn't mentally prepared to ask questions. I will be better prepared to ask the physical therapist some questions. This is upsetting to me. I have had 5 surgeries in 3 1/2 years and lots of physical therapy so to have to start this again is disconcerting.
Thank you trixie for your well wishes. I appreciate it.

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@katrina123
Katrina – here is an example of a swell spot. https://www.performancehealth.com/swell-spots-breast

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@jdriver

Yes I have been managing this for seven years. I first went to a lymphedema clinic for manual massage. They also used a lymphedema machine that helps to alleviate the swelling . I attended the clinic three times a week for about 6 weeks. All my lymph nodes were removed in one arm after my lumpectomy. I have never had any swelling in that arm but in my left breast and chest wall. It flares up occasionally and more especially in very warm weather. I actually got a Lymphepress machine to use at home. I use it periodically to keep everything in check. When it flares up I will use it daily for a few days. Takes about an hour each time. Good luck to you. Also using a compression undergarment helps a lot. I found that using any type of underwire bra made the problem worse. Hope this helps.

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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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@marannolson

I am over 3 years out and get “lumps” of edema under my arm pit and sometimes into my chest. Physical therapy showed me how to “milk” it out. It is well worth your time to learn how to do it correctly.

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marannolson,
I am going to have to do some reading to try to understand more about lymphedema. It sounds more and more like something that is difficult to get rid of. I am going to go the physical therapy and gain as much knowledge as possible.
Thank you for the advice.
Katrina123

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@trixie1313

Interesting. I had never heard of this before. Would you mind if I ask how long you have had lymphedema?
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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Let me make clear that this has not been a constant problem for 7 years ! Initially right after I finished radiation it got pretty bad and very painful. After I did lymphedema clinic it got much better very quickly. I have flare ups especially when I over use my arm as in yard work etc. I would say that I go weeks w/o any problems at all and then there will be a spell of discomfort but nothing like I experienced at first. Have learned to notice symptoms early on and get back to self massage and using my lymphepress machine. Usually clears up again in a day or so. BTW my insurance covered most of the expense for my machine. BCBS You might look in to that. Has been a life saver for me. Takes about an hour and I usually go to sleep, lol

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

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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.

OIP

OIP-1

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@jdriver

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

Jump to this post

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.

Jump to this post

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!

Liked by trixie1313

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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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