VISIBLE SIGNS OF LYMPHEDEMA - A PICTORIAL

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  • marijen
    marijen Member Posts: 3,731
    edited February 2016

    Chisandy I am sorry to hear this has happened to you. I hope it is temporary like Sloan's. Do you think it might have anything to do with your seroma? Could the pain (stars) be from an infection? Or has the radiation caused this?

  • Binney4
    Binney4 Member Posts: 8,609
    edited February 2016

    ChiSandy, this sounds more like Axillary Web Syndrome (also called cording) than lymphedema (although the pain from the cording can certainly cause a lymphedema flare (pain draws more lymph fluid to the area). Hopefully your lymphedema therapist should be able to help with cording. Hang in there!

    Have you learned to wrap yourself? An important skill to have for future flares.

    Please keep us posted. Gentle hugs,
    Binney

  • CyndiNic
    CyndiNic Member Posts: 59
    edited February 2016

    Has anyone had cording down their abdomen? I started about 10 days ago noticing a sharp tightening just under me breast when I rolled onto my stomach at night. Nothing visible but I did mention it to my MO last Wednesday. At that point I didn't have any visible signs just the pain. Last night I noticed and felt a line down my abdomen. Fortunately I am back in the chemo chair today so I see my RO. As of right now this is the only indication I have of something being off. Thanks!

  • lago
    lago Member Posts: 17,186
    edited February 2016

    Cyndi I have heard of it. Also just wanted to let you know I had cording in my right arm and none in my left. I ended up getting LE in my left and still to this day no LE in my right.

  • Binney4
    Binney4 Member Posts: 8,609
    edited February 2016

    Cyndi, the abdominal cording is called Mondor's Disease (though it isn't a disease, just a temporary condition). You can google Mondor's for more information.

    Be well,
    Binney

  • Pammac47
    Pammac47 Member Posts: 128
    edited February 2016

    I am awaiting biopsy results to even find out if I have BC, it was 2/4/2016. However I have one thing that's more than annoying. I do have pain in breast and lymphedema including extreme tingling in fingers. There's is swelling under arm, as well. I showed radiologist and they took US pictures of axillary area when did bx. I have not heard of this prior to surgery. it doesn't effect doing stuff, but it's always there. Anyone? Is there anything natural I can do to help also?

  • lago
    lago Member Posts: 17,186
    edited February 2016

    pammac I have 2 family members that have/had LE in their legs. No surgery or anything, well actually my mom blames hers on me. She got it after either after I was born or when she was pregnant with me

    Loopy

  • Sunshinesprite
    Sunshinesprite Member Posts: 17
    edited February 2016

    Thank you for the helpful advice. I am struggling with LE now and need my right arm/hand to write and type, etc for work, let alone life in general. I just recently started therapy as my upper arm has really swollen a lot and my hand and fingers are swelling lately also. They have used the arm and chest pump on me prior to wrapping to try to decongest and bring the size down so that I will then be able to get a sleeve. Found out my measurements suggest that I will need a custom sleeve (expensive). Hoping my insurance will cover it but, not too confident in that.

    Do the sleeves help a lot? I was told I will have to wear a sleeve pretty much the rest of my life. How cumbersome does this become? Or, do we just acclimate and get used to it? I was terrified of the possibility of lymphedema and now having it, hate it. I have been very positive thru the whole cancer diagnoses (two primarys at same time), chemo, mastectomy, lobectomy, radiation, pneumonitis from radiation and chemo, pneumonia, now LE. So many side effects from so many drugs, some lasting with CIPN, on Lyrica possibly forever to combat the pain. That causes hair thinning and weight gain on top of the prednisone I have been on for almost six months. (Sorry, venting......because family, friends and coworkers truly have NO idea.) Have to have ovaries removed next week due to inability to take tamoxifen and my estrogen/progesterone positive diagnoses. I will have my second mastectomy this fall due to high cancer risk in family. Just want to look forward to something....something good! I know, I am still here and that is good but, want to feel good about myself again. That"s a daily struggle for me right now.

    Anyway, just looking for some good news that this will get easier.

    Hope everyone is doing well.

  • lago
    lago Member Posts: 17,186
    edited February 2016

    I wear my sleeve every day for the past 5+ years. Yes it takes time to get used to them but if it fits properly you will eventually prefer to wear it. My arm just feels better when it's on. I don't wear a glove anymore because my fingers/hand doesn't swell and my LE MD said I don't need to. But when I did I found the glove easier to type with than the gauntlet.

    It may take a year or 2 to get used to it but you will.

  • glennie19
    glennie19 Member Posts: 6,398
    edited February 2016

    I don't need my sleeve everyday,, but I do feel better when I need it and put in on. I do wear my truncal compression every day,, and I definitely feel better with it on. I think you will find that compression does feel good once you get used to wearing it. It is a struggle in the beginning,, I know I had a lot of trouble finding the right combination to help me with my truncal problems,, but now that I have it down,, it is no big deal. Where I used to (long ago!) put on a bra every day,, now I just put on my truncal stuff. No biggie. Hang in there sunshine,, it will get better.

    Insurance can be tricky. Be sure and get an RX from your doctor stating the medical necessity for a custom sleeve,,, or whatever other LE equipment you need. Hoping that wherever you purchase from, can help you with filing insurance.

  • grandma3X
    grandma3X Member Posts: 759
    edited June 2016

    I had a left MX in January with 1 node removed, then a PMX of the right side in May (6 weeks ago) with 2 nodes removed. During this last surgery, they put the bp cuff on my left calf. Since then, my calf and ankle have been swollen, usually during the day, but then they go back to normal overnight. I have a graded compression knee-high stocking that I have been wearing as much as possible during the day and it seems to help. I also had an ultrasound 2 days after surgery which ruled out blood clots. Is it possible that this is LE? Has anyone else developed LE in their legs after removal of a couple of axillary nodes? My arms are fine - no swelling there.

    Anyway, my PCP is sending me for another Dopler ultrasound with compression. He did not describe it, but from what I have read on Google, they put bp cuffs on my legs and arms and then do ultrasound to determine if I have peripheral artery disease. I'm not really comfortable with this and worry that if it is LE, that this will make it worse, or it may induce LE in my arms, which have been normal up to now. Has anyone had this test done before? Should I be worried about having it done?

  • lago
    lago Member Posts: 17,186
    edited June 2016

    Grandma I have LE in my left arm (10 nodes, no rads). My other arm had 4 nodes. I get PB once year (occasionally more but try to keep it to a minimum) and do have to get blood work on that arm but won't let them use a tourniquet. Lucky me I have good veins. I also have a family history of LE in legs but so far left arm is fine. I would discuss with doctors and make sure they don't put the pressure up too high but…

    untreated peripheral artery disease can lead to gangrene or amputation. I know I would rather live with LE than have my arm or leg removed. You have to weight the risk reward.

  • tsoebbin
    tsoebbin Member Posts: 474
    edited March 2017

    glennie... What type is truncal compression do you wear?

    Thank you

  • glennie19
    glennie19 Member Posts: 6,398
    edited March 2017

    I wear lined breast binders from EAB Medical. With a Swell Spot on the affected area.

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