I got pain because of lymphedema, can u help me please?

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dirikuwanita
dirikuwanita Member Posts: 42
edited June 2014 in Just Diagnosed With a Recurrence or Metastasis
I got pain because of lymphedema, can u help me please?
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  • dirikuwanita
    dirikuwanita Member Posts: 42
    edited September 2010

    I was diagnosed in May 2008, DIC stage 2B and underwent radical mastectomy, chemo with cyclophosphamide, adryamycin and 5FU, took tamoxifen for 2 years, and replace it to Aromase in the following year. One month ago (Aug 2010) I found some lump on my neck in the same side (unfortunately, it was mets of BC), I got radiation, and still get it now.

    At the same time, I got a little swollen at my arm at the same side without pain,than I had to see a physiotheraphy clinic to reduce the swollen, but at the third coming (yesterday) , I consider to come to another clinic, because the illness wasn't getting better and my pain was getting worse. From the last clinic, I knew that lympheedema in my case, is prohibited to receive diathermia physiotheraphy whereas I got it in the first clinic( lighted by infrared light), because it can induce cancer spreading. Ufff... I hope.. it didn't happen with me, although I have gotten the mets on my cervical node.

    Then, in this clinic I got physiotheraphy by entering my arm to a bag that can be distended like baloon step by step until some pressure expected. And the doctor suggest me to do some excercise regularly to prevent limited movement of my arm, because if I don't, it would be worst so that I couldn't move my arm normally. and also, I have to massage my arm slightly (not to massage it with pressure).

    But last night, I felt a horrible pain in my armpit and my chest near the armpit, until I woke up.

    Is there someone out there who have any experience in lymphedema? What was your clincian do with your arm? Will it come back as normal? 

    I also doubt to do this phisiotherapy, isn't any massage also can induce mets spreading?What should I do?

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  • dfleaman
    dfleaman Member Posts: 159
    edited September 2010

    I do not want to scare you but, I have had bad lympadema with both my arms.  I had nodes removed from both arms.  I had pain also but the pain under my arm pit was intense burning pain.  I went to dr. he sent me to surgeon for a boipsy.  that is when I found out my cancer had turned to mets in my bones and liver.  My case my be nothing like yours.  I try and move my arms as much as possible.  I have learned not to do things with my arms that will make them flare up. 

    Good Luck and take care Donna

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  • Binney4
    Binney4 Member Posts: 8,609
    edited September 2010

    dirikuwanita, hello,

    Pain from lymphedema in the arm is rare, but when the swelling is in the armpit or chest it is common to have pain there. I think the treatment you got where you put your arm into the bag that inflated (distended like a balloon) is a lymphedema pump. Here is a problem with some lymphedema pumps: it can push the fluid up into the armpit and the chest, and that may be what is happening to you. The gentle massage you are doing should not do the same thing, because the massage helps your body move the lymph fluid where it should be, but the pump can make it stuck in the armpit and chest.

    You can find some lymphedema self-care videos to watch here. They'll show you how to do the massage:
    http://www.nwlymphedemacenter.org/

    Here is information about all the kinds of standard lymphedema treatment:
    http://www.stepup-speakout.org/treatments_for_lymphedema.htm

    You're right that the diathermia is not a good idea for treating your lymphedema, but your massage and use of gentle compression can be done, even in the presence of active cancer, although it should not be done directly over the cancer site itself. 

    I have searched before for well-trained lymphedema therapists in Indonesia and have not been able to find any. You might call the Infectious Disease departments of the university medical schools and ask them how to find good care, as they study filarial lymphedema in Indonesia and may know what resources are available to you locally.

    Donna, if you haven't been treated by a well-qualified lymphedema therapist for your lymphedema I'd urge you to get a referral. With proper treatment you will likely have fewer restrictions in using your arms and the lymphedema will not progress. Good treatment also greatly reduces your risk of serious systemic infection, which you sure as heck don't want to deal with. Here's a page about finding a therapist near you:
    http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

    Gentle hugs to you both!
    Binney

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  • dirikuwanita
    dirikuwanita Member Posts: 42
    edited September 2010

    dfleaman: ... I am so glad you share your experience with me. Indeed, my pain is not burning pain like you, I felt it again last night, the pain looked like something squeeze my muscle particularly at my chest (until I groened). Yesterday I was examined by USG, in fact there was fibrosis and enlargement a lymph node there, but Im confused, because according to my onc, he had removed all the node there. I hope that is not some bad news, today I wanna go to my onc to discuss it. Tq Leaman..

    Binney4: ... Your suggest is very meaningful, I'm gonna see the link. Tq... 

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  • mrsnjband
    mrsnjband Member Posts: 1,409
    edited September 2010

    I am just starting to go to a lymphedema therapist. I have been having more pain in arm on the bc side. I have had a couple of flares of swelling in my hand as well. So I am going to see what can be done to lessen the pain and to keep from having flares. I do more lifting with the other arm but I am dominate on the bc side.  So if I getting any good tips, I will share them!

    Hope you find a solution for you situation. NJ

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  • dirikuwanita
    dirikuwanita Member Posts: 42
    edited September 2010

    Tq mrs. I think so, we must reduce lifting in the arm afected

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