Is this the start of LE?

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CAMommy
CAMommy Member Posts: 437
edited January 2016 in Lymphedema

I did not have any nodes biopsied or removed but I did have radiation, hypo fractionated, 3 week kind.

During rads I felt tightness under my arm, it felt like tight muscles. I didn't think too much of it since I was going through rads and getting ready to move (we moved across country the day after I finished rads). Either the discomfort went away or I was too distracted but I can't remember feeling it around our move. I saw the MO in October and don't remember feeling it. Around the end of October beginning of November I started feeling the tightness again. If I stretch my arm up I can feel it in my chest and arm pit. I can't really tell if there is swelling, if there is its mild. It hasn't gotten better or worse since November but is constant. I see the MO on the 20th and will definitely ask him. I just had my 1st follow up mammo today and all is clear.

So does this sound like LE? My mom is a BC survivor (43 years and still going) and she has very bad LE.

Thank you

Comments

  • SusanSnowFlake
    SusanSnowFlake Member Posts: 165
    edited January 2016

    It could just be scar tissue. I was told to message my scar by gently walking my fingers back and forth over it a few times a day. I also have cording which felt like pulling when I raised my arm mostly in my arm pit and a sharp sudden pain if I went to far. LE feels heavy. My breast felt like it weighed more it was pinker and warmer than my other breast. LE started with what I would describe as a mild achy feeling, sore but not sharp stabbing or sudden pain, the soreness increases with activity.

    I don't know if that is how everyone with LE would describe it because LE seems is an individual experience, effecting people differently.

    Hope this helps

  • macb04
    macb04 Member Posts: 1,433
    edited January 2016

    Hi, it could also be radiation fibrosis. Causes this weird sort of painful tightness which I notice when I raise my arm or put it behind me. Some people call that an iron bra feeling. I got Hyperbaric Oxygen therapy for the fibrosis as my skin was so tight. Insurance actually paid for the HBOT treatments whichhealed my skin considerably.

  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited January 2016

    I went to an LE specialist (renowned). He said by visual assessment, palpation and objective quantitative measurements my symptoms (similar to yours) didn’t look like LE; but from my qualitative description of my symptoms and when they appeared (especially finger swelling when wearing a gauntlet on a long flight) he was classifying it as borderline stage 0 LE anyway (primarily so Medicare would cover my upcoming PT/OT sessions and perhaps my supplement might pick up part of the cost of a glove). He also doesn’t prescribe compression garments to node-negative patients with 4 or fewer nodes removed by SNLB, which SNLB area wasn’t irradiated, nor does he recommend compression garments--not even for long flights or moderate upper-body exercise--for LE prevention in patients not definitively diagnosed with it. (He prescribed a glove for in-flight comfort but only as needed). And my enlarged and hardened tumor cavity is not LE, but rather just a seroma aggravated by rads.

  • CAMommy
    CAMommy Member Posts: 437
    edited January 2016

    thank you for your responses. It's not hurting as bad today. I will look into radiation fibrosi

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