Could I have Lymphedema?

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Sleuth01
Sleuth01 Member Posts: 42
edited June 2014 in Lymphedema

I had eight nodes removed from my right side when I had my mastectomy in September 2010. I have not had any Lymphedema symptoms. About 6 weeks ago I noticed pain in my right shoulder down the top part of the arm. I assumed it was stress from playing games on the computer (constantly using my right arm). I even went to PT, but stopped. This was not a Lymphedema therapist. The last few days the pain has become so bad that at times I can only move my right up or down if I hold it with my left hand. I have no problem on the computer. Actually the pain comes and goes. I am concerned that I may have Lymphedema. It is Christmas Day, I don't drive and there are no good hospitals where I live. If I were to go to an emergency room, I would have to take public transportation to get there.  Tuesday, I am going to the hospital for a PET Scan so can see about the arm then. I have had this pain for quite awhile now that I thought I could wait another two days to look into it.

Any ideas or suggestions?

Thanks,

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  • Sleuth01
    Sleuth01 Member Posts: 42
    edited December 2011

    I'll answer my own posting. I just called my oncologist's office and spoke to the doctor covering for her this weekend. They said that the PET Scan would help a lot in seeing what was wrong and that it sounded like a muscular/skeletal problem. She said I could wait until Tuesday when I go to have the PET Scan to look into this. Phew!!! That's a relief. I didn't want to go to the emergency room on a holiday weekend. Have a great holiday everyone.

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  • Char2010
    Char2010 Member Posts: 532
    edited December 2011

    Sleuth - keeping my fingers crossed for you that all turns out good

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  • kira66715
    kira66715 Member Posts: 4,681
    edited December 2011

    Sleuth, whlle LE causes pain, from what you write, it doesn't sound like LE. And LE would not be addressed in an ER--you'd need to see a LE therapist to get assessed.

    May not be a bad idea, after you get the PET scan--hoping all is well on the scan

    http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

    Kira

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  • carol57
    carol57 Member Posts: 3,567
    edited December 2011

    I'm posting a somewhat unrelated question that falls under the category of 'could this be LE' --in case someone sees this and it sounds familiar.  A friend showed me her hand today--shockingly cold, numb, and blue-ish nails. She had IBC with node removal on both sides, many nodes on the IBC side and just a few on the other side.  She's wondering if this could be LE, which so far has left her alone.  There's no swelling, however, and these hand issues happen mostly when she's out in the cold.  She has a call in to her BS and her PS, but meanwhile asked me if my LE research brought anything to mind.  Doesn't make LE sense to me, but I'm a newbie at LE, and if this is indeed a symptom, I want to know about it, too.  Anyone have any similar experience?

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  • beacon800
    beacon800 Member Posts: 922
    edited December 2011

    Carole57, could your friend have Raynauds syndrome?

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  • Linda-n3
    Linda-n3 Member Posts: 2,439
    edited December 2011

    Carol57, there are also some drugs that some of us take for SEs from chemo that can cause very cold hands.  I am on Effexor for chemotherapy-induced neuropathy, which is helping that, but it causes vasospasm so bad that my hands and fingers are always cold.  It is similar to Raynaud's as beacon800 suggested.  There are also a lot of other causes, so she should get it checked out - she doesn't need to live with it if there is a treatable cause!

    Sleuth and others, DEFINITELY do not go to an ER with lymphedema.  I have worked in emergency medicine in the past, and this is NOT something most ER folks are familiar and can even cause more problems and certainly add lots of expenses as they track down something they don't know how to deal with.  So while LE is an URGENT problem, it is not EMERGENT, so go to the LE specialists! I sure hope you are not dealing with LE, and hope you are feeling better soon.

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  • carol57
    carol57 Member Posts: 3,567
    edited December 2011

    My friend is about a year out of her chemo treatment; do the SE's from chemo linger like that?  I am fortunate not to have had to do chemo, so no personal experience there.  She is indeed scheduled to see her BS and I will suggest she ask about Raynaud's, although it sounds like if Raynauds, probably not related to her BC?  Thanks for the suggestions.   Friend knows I have LE and so asked simply if I thought there might be an LE connection. She will pursue this 'til there's an answer.

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