Ask Dr. Roach: LE

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kira66715
kira66715 Member Posts: 4,681
edited June 2014 in Lymphedema

Saw this in our paper today, it's a syndicated column, found a URL for it: http://www.timescolonist.com/life/dr-roach-lymphedema-involves-fluid-gathering-in-extremities-1.111326

Dear Dr. Roach: Three days ago, there appeared an unexplained wet spot at the inside of my husband’s sock, and also near the cuff of his slacks. It happened again during the next two days.

We consulted his doctor, who diagnosed it as a leaking lymph node, and said he had no way of treating it, but increased the furosemide my husband is taking from every other day to a daily dose, hoping to decrease the swelling in his legs.

In the past, my husband has battled non-Hodgkin’s lymphoma, and also a blood clot in the “leaking” leg. Both legs have been swollen and tight to the touch for a year or even longer.

Interestingly, the cardiologist’s comment was: “Don’t worry about it, it’s only cosmetic.” There seems to be no problem with his heart or lungs.

We would appreciate any input you have on this subject very much, since we had never heard of this condition before. F.L.

It sounds to me as though your husband has lymphedema.

Lymphedema is a swelling in an extremity (but usually leg or legs) that doesn’t improve much even after sleeping.

Lymphedema has many causes, including cancer, surgery and blood clots, but many people have lymphedema with no known cause. In the case of cancer, it does not necessarily mean that the cancer has come back, but most cancer physicians would carefully evaluate for recurrence.

I think what is happening is that the skin has been so tight for so long that the integrity of the skin is breaking down, and the lymph fluid is literally leaking through the skin. It’s not a lymph node that is leaking. A lymph node is a localized organ of the lymphatic system, where white blood cells congregate.

In this case, the whole lymphatic system, which should be returning fluid to the circulation, isn’t working properly, so the fluid is backing up. I had one patient who literally lost litres of fluid from his legs.

Unfortunately, many physicians are not so well-educated about lymphedema. Diuretics like furosemide can help for a day or two, but they are not effective in the long term.

One effective treatment is manual lymphatic drainage. A trained therapist massages the affected limb to drain the fluid back into the circulation.

Unfortunately, this generally can’t be done with the skin so broken down, so frequent leg elevation (above the heart, at least three times a day for at least 30 minutes each time) may be necessary until the skin heals and MLD can start.

Support stockings, effective for people with occasional leg swelling, are sometimes useful, especially if you choose to have them custom-fitted.

Your husband’s cancer doctor is more likely than the cardiologist to have resources available that would help in this situation.


Dr. Roach regrets that he is unable to answer individual letters, but will incorporate them in the column whenever possible. Readers may email questions to ToYourGoodHealth@med.cornell.edu or write him at P.O. Box 536475, Orlando, FL 32853-6475

Info on Dr. Roach: http://kingfeatures.com/features/columns-a-z/to-your-good-health/

Comments

  • carol57
    carol57 Member Posts: 3,567
    edited April 2013

    Kira, whoever Dr. Roach is, bully for him!!!  And this poor patient's cardiologist is seriously clueless and apparently has not got the intellectual curiosity (nor is he respecting his moral obligation) to research symptoms that he's quite aware he doesn't understand. Thanks for posting this eye-opener.

  • purple32
    purple32 Member Posts: 3,188
    edited April 2013

    Wow!

    Just incredible- it never ends.

  • NatsFan
    NatsFan Member Posts: 3,745
    edited April 2013

    We in the b/c community get more than our share of coverage compared to many other types of cancer (a friend w/ colon cancer once teased me that b/c was the "pink poodle" of cancers).  But one good thing about all that pink ribbon crap is the visibility it gives us. 

    By bonding here together and educating each other, those of us with b/c related LE can use our visibility and our numbers to keep pounding away at doctors, the medical community and others to educate them about LE.  This increased awareness can help not only future b/c patients, but can help anyone who suffers from LE, no matter what the cause.   How many of us personally have educated our PCPs, for instance?  And maybe as a result, our PCPs may be more likely to consider the possiblity of LE when faced with a patient with swelling.  It's slow going, for sure, but I feel that in some small way each of us is helping to make a difference in raising LE awareness. 

    Yes, hooray for this Dr. Roach!!  Maybe he once had a vocal LE patient who started him on his LE education! Wink

  • Binney4
    Binney4 Member Posts: 8,609
    edited April 2013

    NatsFan, YES! Together we can make a difference--not only for bc, but for LE of every stripe. For the little babes born with it, the young teens who suddenly develop it, the oldsters in nursing homes whose symptoms and distress are ignored. The list goes on and on, and those of us with bc-related LE are the only ones with a platform.

    Break out your soapboxes, ladies! We've got work to do!LaughingKissCool

    Onward!
    Binney

  • jpsnyc
    jpsnyc Member Posts: 3
    edited April 2013

    Hello, I am new to this website, and I have a question about lymphedema.

    I had a bilateral mastecomy four months ago and completed radiation about 4 weeks ago.  I recently developed a pully pain in my arm that is mostly from my elbow to my wrist.  I looked at a picture of the lymph system, and the pain seems to be right there.  As I said, it's a pulling pain, but there doesn't appear to be any visible swelling.  Still, I am wearing my sleeve and glove (as long as I can bear wearing them).

    I'd appreciate any insight and advice.

    Thank you!

  • kira66715
    kira66715 Member Posts: 4,681
    edited April 2013

    jpsync, it sounds like you have "cording" which are clotted off lymphatics--check out this page and see if it seems like what you have:

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

  • Binney4
    Binney4 Member Posts: 8,609
    edited April 2013

    Hi, jpsync, and welcome!Smile

    The "pulling pain" part sounds like Axillary Web Syndrome, also called "cording." Here's information about it, so you can see if that fits your experience.
    http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm

    Hopefully you'll get a clear diagnosis and some prompt relief, and never have to join our "Sisterhood of Swell"!

    Please do let us know what you discover. Gentle hugs!
    Binney

  • jpsnyc
    jpsnyc Member Posts: 3
    edited April 2013

    Wow, talk about a quick response!  Thank you, Kira.  Yes, exactly what I'm experiencing.  UGH!

    I have surgeon's appontment in two weeks but will report this to her before then.  Not sure it will get me in to see her sooner, but at least I know what it is and how it can (or cannot) be treated.

    Many thanks!

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