Can you have LE without swelling 5 years after surgery?

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LizM
LizM Member Posts: 963
edited June 2014 in Lymphedema

I am over 5 years with bi-lateral with reconstruction, auxillery dissection (total 8 nodes removed) and radiation to the auxilla.  I do not have any noticable swelling but my arm feels heavy and achy.  I somewhat over did it during the holidays and was not as careful as normal.  Carried heavy bags when shopping, carried hand basket at grocery store and filled it too full and heavy when should have used cart, things like that.  I am hoping I just have sore muscles from over using my arm but it has felt achy and heavy for several days now and I am wondering if it could be the first signs of LE.  Has anyone here who has been diagnosed with LE started out with pain but no swelling? and is there anyone here who was diagnosed with LE after 5 years from bc surgery?

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  • Binney4
    Binney4 Member Posts: 8,609
    edited January 2011

    Liz, I'm with you in hoping it's just some sore muscles! But you're really smart to be looking into this now. We have women here on this board who have developed lymphedema more than 20 years out -- sadly, there's no "statute of limitation on this particular treatment side-effect.Frown (And on the other hand, congrats to them for being 20 years out!Cool)

    In the past three or four years there's been research that indicates that women who seek treatment for lymphedema when their arm starts to feel achy and heavy, and don't wait until there's visible swelling, have a much easier time of it with both therapy and long-term control. So NOW is definitely the time to get a referral from any member of your healthcare team to a well-qualified lymphedema therapist. Here's information about how to find one near you:
    http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

    Aching and heaviness without swelling is called sub-clinical or "Stage 0" lymphedema. There can be up to 30% more fluid in your tissues than is normal before any swelling is visible, so treating it now can reduce that build up and help you learn how to keep it in control.

    Let us know what you discover -- hoping it's sore muscles! Big, gentle hugs,
    Binney

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  • LizM
    LizM Member Posts: 963
    edited January 2011

    Thanks Binney,

    I have a question.  How can they tell if it is stage 0 pre-clinical lymphadema if there is no swelling?  Is there any way I can tell now without going to an LE specialist?  Is there a certain period of time I should wait to see if the achiness goes away.  I have only been feeling it for a few days - should I wait a week or two?

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  • Binney4
    Binney4 Member Posts: 8,609
    edited January 2011

    Liz, there's no way you can tell, but a well-trained and experienced lymphedema therapist will be able to tell by medical history and physical exam.

    Don't wait. Besides the fact that lymphedema is progressive and that stagnant lymph fluid is highly infection-prone, a simple evaluation is a WONDERFUL idea even if you don't have lymphedema. The therapist will do baseline arm measurements for future reference, give you personalized risk-reduction tips, and fit you for a compression sleeve and glove or gauntlet (fingerless glove) that you can use prophylactically for exercise and travel. Win-win! Go for it!
    Binney

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  • LizM
    LizM Member Posts: 963
    edited January 2011

    Thanks for the info and the link.  I am lucky as there are LE therapists in my area and at the hospital where I was treated - Johns Hopkins.

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  • LizM
    LizM Member Posts: 963
    edited January 2011

    Have made an appointment with an LE therapist.  I noticed a couple of more things.  I reviewed the post showing visable signs of LE and noticed that even though I don't have swelling in the my left arm that I can tell, I have the problem in one of the picture where you hold up four fingers and try to hold down you thumb.  My thumb on my problem side is not flexible (can't bend it when I hold up four fingers) and looks like the picture and my thumb on the right side is flexible and bends easily while holding up four fingers.  I also noticed today that I am having trouble getting my wedding rings off my problem hand which had never been a problem before.  Could there be some unnoticable swelling in my hand?

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  • Binney4
    Binney4 Member Posts: 8,609
    edited January 2011

    Liz, it's hard to eyeball early LE swelling, but the things you mention do point to unrecognized swelling. For now, maybe leave the rings off (you can wear them on a necklace, or put them someplace safe for nowFrown). I still wear my rings on my left hand, even after six years of LE, but when I sense a flare I do remove them for a while. Your new therapist will do a thorough evaluation that includes your arms and hands, so do mention these issues to her/him. When I first went to a therapist for my chest LE she discovered some LE in my upper arm -- complete surprise to me!

    Let us know how it goes. Hugs,
    Binney

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  • LizM
    LizM Member Posts: 963
    edited January 2011

    What is chest LE and how would you know you have it.  The reason I ask is because as I have said before I had bi-lateral mastecomy with reconstruction, auxillery dissection AND radiation to the supraclavical nodes and auxilla as well as the breast area.  When going through PT for frozen shoulder twice with a regular PT not an LE she noted significant scar tissue in my uppper left side of my chest and it still feels like pins and needles and is swollen in that area.  I never even thought of LE in the chest.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited January 2011

    Liz, breast/chest lymphedema is actually called "truncal lymphedema," and it's pretty darn common, though rarely diagnosed because our doctors and other healthcare providers don't always know about it. I just read a paper this morning that estimated between 40 - 80% of women who currently undergo bc treatment will develop truncal lymphedema (though nowhere near all of them will ever be diagnosed). Undiagnosed and untreated lymphedema can lead to serious and repetitive infection and to further lymph blockage, and it can also be a source of pain, so it's not a harmless condition at all and deserves attention and treatment. Here's information about it:
    http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

    Glad you have your first appointment coming up -- soon, I hope!Smile Please keep us posted,
    Binney

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  • LizM
    LizM Member Posts: 963
    edited January 2011

    Thanks Binny - looks like I'll have to wait a month as there is a waiting list for an appt with either of the two certified LE specialists at Johns Hopkins where I received all my treatment and the hospital where I can get a referral and insurance coverage.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited January 2011

    Liz, unfortunately having to wait is common -- not enough trained LE therapists! Here's information about what to do while you wait for care:

    http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm#while%20waiting

    Hope it helps!
    Binney

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  • Alyad
    Alyad Member Posts: 817
    edited January 2011

    I have truncal LE- it started about a year ago- I got the heavy achy feeling in my shoulder and the scapula area of my back. I didn't feel anything in my arm at all and there is no noticable swelling. I went in for LE eval and she measured both arms- starting at the wrist crease, she took a tape the length of my arm and made a mark every 5 cm, then took circumference measurements at each mark- I did have swelling in my upper arm- it was a few cm larger than my good arm.

     I did wrapping for awhile and then got a LE sleeve to wear, but mostly I just try to do MLD regularly and that seems to keep it under control. I stopped wearing bras because that seems to be a major trigger for the truncal LE- I wear camisoles instead, some provide some compression. I am a C cup, most of the time that's enough support for me- I still wear a bra with certain tops, but I try not to wear it for more than a few hours.

    I have also noticed my monthly cycle to be a big trigger- at the times of the month I retain more fluid, my LE flares up a little.

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  • CAW
    CAW Member Posts: 45
    edited January 2011

    Liz...I was dx'd with mild LE 6 years after my BC.  I really don't have visible swelling but I have the PAIN.  It was very difficult to get my Dr's to say that I had LE because they all told me I didn't because of no swelling and they said LE wasn't painful so they were ruling it out.  Thanks to this wonderful sight and the awesome women on here....I learned enough about it and got in to see a LE Therapist at the hospital and she said I definitely had mild LE.  She taught me to do MLD and gave me a list of exercises to do daily and if I by chance think I'm feeling good and decide to skip a day of MLD....I pay for it the next day with pain!  When this happens....it confirms to me that it is LE!!  Good luck to you!

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