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Topic: Does all lymphedema progress

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

Posted on: Apr 16, 2006 07:12PM

alexa61 wrote:

Hi. I am 1 year post lumpectomy with axillary node dissection. For the whole year my affected arm has been approx 1/2-1 inch larger than my R just above the elbow. The rest of the arm is the same size as the other. Upon exhertion, sometimes I notice that the area on my wrist and forearm below the palm of my hand seems to get a almost lumpy, mottled appearance which goes away after rest. I have been slack in taking lymphedema precautions. Moved major furniture myself this weekend and painted 3 rooms. I did wear a compression sleeve. Anyway, my question is, do some people just have a small amt of lymphedema that doesn't progress or does all lymphedema progress to a more severe stage if not tx'd by a PT? Anyone else out there have a mild case which is not really noticable for any period of time? Do you live your life feeling very concerned about it?

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Apr 17, 2006 07:09AM burns_la wrote:

I did have LE after my mast/immediate TRAM, and was rx pt by a special LE therapist for 2 weeks. She made sure to talk me through it so I could do the massage at home. I keep mine down now through self-massage. I fly, move furniture, workout 3x a week, etc., and so far am able to keep it down myself. I think the cirdulation and exertion is good for it - maybe only because mine is a milder case? I had 20 nodes removed. Seems in my case if I keep on top of it - it's better. I do a self-massage (modified) every day in the shower and then do extra when I can feel it coming on.

Laura from Oregon. On the way to my "new normal." I will never be totally free of the worry, but will no longer be defined by it. Dx 12/31/2003, IDC, 1cm, Stage I, Grade 1, 0/18 nodes, ER+/PR+, HER2-
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Apr 17, 2006 08:14AM jinky wrote:

Good question....i would like to know the answer to.....do you wear your sleeve only when you do work???
jinky
age 2, grade 1, 4 chemo, 5 yrs tamoxifen, femara 48mts, preventative mastectomy 2005 Dx 4/30/2002, ILC, 2cm, Stage II, Grade 1, 1/11 nodes, ER+/PR+, HER2-
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Apr 17, 2006 01:27PM Binney4 wrote:

It's kind of a confusing question, I think. Burns, what you're describing sounds like you're staying on top of treating your LE, so it's not progressing, but it's your treatment of it that's keeping it from getting worse -- that is, moving on to Stage 2 and Stage 3. Alexa, I think what you're describing is LE that's been mostly untreated, and you're asking if it's going to get worse, right? But I think that depends on what you mean by "progressing." It seems like what you're saying is that it doesn't seem to have grown much bigger, and that's certainly possible with LE. But even if the swelling remains stable, if it's untreated it will progress through the LE stages. Which means that the tissue that's swollen will become fibrotic, hard, and eventually impossible to reduce. If the swelling is not enough to bother you aesthetically and if it's not painful, then it can be hard to see what point there might be to reducing it and controlling it.

The problem is, untreated post-bc LE can lead to potentially very serious (systemic) infection, which may require hospitalization and high doses of antibiotics (and, to be real frank, it's rarely but potentially fatal). Any break in the skin is even more dangerous with uncontrolled LE than with LE that's kept in control by massage and compression, because fibrotic tissue further blocks healing and promotes complications. But also, without treatment and control, our LE can even lead to spontaneous infection (without any breaks in the skin), which to me is especially creepy and crummy! Studies by Foeldi (a LE research leader) show that we post-bc ladies who do the treatment routine do not suffer from spontaneous infection. Another possibility is lymph leakage, which is a caustic seeping of lymph fluid directly through the pores, which happens only in untreated LE. And untreated LE may eventually also lead to reduced arm strength and range of motion.

Okay, having pronounced all that doom, I'll admit that I know women who have done nothing to control their post-bc LE and so far have had no problem more serious than having to find a seamstress to adjust the cuffs of a dress that was too tight on the affected arm. So in that sense, at least, their LE has not "progressed." It's a matter of each of us educating ourselves (since our health-care providers are not too likely to educate us) and then making our own decisions about what we're willing to do or not do, risk or not risk, put up with or not put up with.

Unfortunately, I don't have much choice with mine. My LE is "mild" in that I caught it early, it has not progressed to a further stage, and my arms and chest are very close to "normal" (pre-LE) size. But it's considered "sensitive" in that I can't go without compression for very long before it begins to swell, and certain activities make it swell despite all my efforts to control it. (On the other hand, it's also quick to respond to massage and/or compression and fairly easy to get back into shape when I overdo it -- easy, but frustrating!!!)

Burns, you're right about the exercise -- it is a help to moving lymph fluid, but what you're describing is exercise within the bounds of good control. There are already some studies that show exercise and movement (with proper care) helps to both prevent and control LE, and there are more studies currently in progress -- one even looking at the positive effects of bench pressing!

Does any of that help, or am I just muddying the waters here?!

Binney
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Apr 19, 2006 04:22PM alexa61 wrote:

Binney,
I am so distressed about the whole lymphedema issue. I have always been an extremely active person. I am a single mother that has alot of credit card debt so therefore I do everything around the house myself, including moving furniture that I really have no business moving lymph node disection or not. I don't have anyone I can ask and cannot afford to pay anyone to do the heavy stuff. Anyway, my affected arm has appeared to be a bit flabbier than my unaffected arm for this whole past year. I did not pay any attention to it, attributing the flabbiness to inactivity due to surgery and the fact that it is not my dominant arm. I have been rather proud that I had escaped the lymphedema problem...or so I thought. Yesterday, I looked below my axilla at the fatty area under the arm extending down to the inner portion of my elbow and noticed that it seemed flabbier than usual. I noticed that I can actually make a pitting mark. This being all after I moved large furniture on Saturday. I cried for much of the day because I just don't know how I am going to live always worried about lypmphedema. Now that I have it, will I always? Will it get worse? So far I have been rather lucky in that the lymphedema seems to stay confined to the one area. Will it move down my arm? I feel almost afraid to even use my arm which is exactly the frame of mind I was in 3 months after surgery. I thought I had moved past this. I am so upset. I made an apt with a PT for tomorrow. It's so sad that with everything a person goes through to treat BC, not only do we not know whether we are cured but we are left to fear a beast that to me is right up there with the cancer itself. How does anyone really enjoy life after bc? Goodness knows I certainly have been trying but something bc related seems to always get in the way.
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Apr 20, 2006 09:22AM Binney4 wrote:

Alexa, I'm so sorry about this rotten complication of your already-overfull life. I know it's small comfort, but all of us who have been where you are now can shout a sympathetic "YES!!!" to everything you're feeling (and that you expressed so well). Lymphedema hits like a freight train, and the path back to being in control of your life again can be longer than you'd like. There's a learning curve here: about the lymph system, how to bandage in order to reduce the swelling, how to do self-massage to keep the swelling from returning, how to find compression garments that work for you. But as you accomplish each of those steps you really will find yourself regaining your equilibrium. The process, though, and even the need for it, is heartbreaking and frustrating.

Here's the good news: if you have a good lymphedema therapist you'll be able to learn all these things with her support, and then you'll be able to do all the things you need to do WITHOUT worrying anymore about LE, because you'll know exactly how to keep control. Honest, that's true. It gets better.

Will it move down your arm? Maybe, yes. If you start therapy and learn how to manage it, that's not at all likely. Will you always have it? Yes, but it won't always be out of control and you'll know how to take care of it yourself, so you won't have to keep a therapist in your pocket for the rest of your life. There are no nasty drugs to take with this, no invasive procedures whatsoever, and once you're properly trained and outfitted you'll be back in business.

Still, I just want to acknowledge again that the sadness, anger, frustration, and near-despair you're feeling are all part of the package, just like the emotions that threaten to swamp us with the bc diagnosis. There are a lot of very wise ladies here ready to help you through, so please do feel welcome to come here, ask questions, kick and scream, whatever. We're here for you, Alexa.
((((hugs))))) and lots of prayers,
Binney
P.S. -- You know what else is real FRUSTRATING? Cyberspace, because I can't deliver a hug in person, sit and sip some hot chocolate with you (or better yet a Starbuck's chocolate chip frappuccino), and shed some tears together. Aaargh!
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May 17, 2006 01:35PM sherry7 wrote:

Binney your words are very comforting and needed. Thank you first of all. I am one of the "special" bc survivors who had a mastectomy with tram recon. Not one node was removed or disturbed yet I find myself six months down the line with right arm and trunk LE. I felt like the bc diagnosis all over again because I do have knowledge of our lymph system and since I am (was) a massage therapist I knew just how bad this was for me and my career. My heard door swinging closed as I thought of all the things that I planned to do "later" that I won't be able to do now or later. My hands and my arms are or were my contribution to the world, making people feel better. Now my hands feel literally tied. Ahhhhhhhhh, you said we could release in here right? thanks, sherry

let the miracles happen... Dx 9/17/2005, DCIS, 1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR-, HER2+
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May 17, 2006 02:56PM Binney4 wrote:

Welcome, Sherry,

Did you read the new post about the upper-body exercise research? I hope it offers you some concrete encouragement about your future, because it does begin to prove that upper-body activities (such as being a massage therapist) can not only be done (building up gradually, of course), but can actually be beneficial.

First, though, have you begun therapy with a well-qualified LE therapist? The intensive takes 2 - 5 weeks and involves wrapping, exercise and the special gentle LE massage. None of which will take you long to learn, with your background (although learning any of this for yourself carries an emotional charge that's bound to be hard to deal with--I'd guess maybe even harder than what the rest of us deal with). After a few massage sessions your hands and arms will begin to feel lots more flexible and usable (well, aside from the bandaging, of course, but keep in mind the bandaging is not permanent.) When everything is reduced you'll be fitted for garments, which will allow you to continue using your arm and protect it from further swelling. Make sure the therapist you choose has experience in truncal and face/neck massage.

Have you thought about becoming a LE therapist? Takes 135 hours of specifically LE training (1/3 classroom, 2/3 hands-on). At present a massage therapy certification is sufficient for background (though who knows what the requirement will finally be, when/if LE certification finally becomes mandatory). This site has links to 4 or 5 excellent LE therapy schools (click on "Therapist Locator"):
www.mylymphedema.com

Or check out the National Lymphedema Network's listing of approved training programs at:
www.lymphnet.org

Don't give up, Sherry. Your hands and arms (and your heart) still have plenty to contribute.

Please keep us posted.
Big, strong, two-armed (((((hugs))))),
Binney
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May 23, 2006 01:59PM sherry7 wrote:

Binney your a saint, thank you for your kind words again and inspiration. I am on a tricky side of the coin with massage being my profession. I am now wearing a sleeve and glove daily and adjusting to all the things that seem to affect my LE in its acting up. Today for instance, rain, sun, wind, rain, sun....you get the picture. Today is a painful day for me. I would not be able to go good work on a day like this. So how do I plan a work schedule?
The weather people are never right, can't go by them, lol.
I have found that the LE pain brings on anxiety which I take ativan for and the stress lessoning seems to lesson the pain. Then if it won't back off, I take half a vicaden. After that its, lalalalalalala and I am not worth a hoot. I sit, elevate and pass another day. I may find myself doing the teaching you refer to. I already teach massage at a local college, it wouldn't be a new thing for me. I guess my question is, does the ups and downs in the body ever level off after time or is it always reactive to the elements and stress? Take care Binney, love ya, Sherry
let the miracles happen... Dx 9/17/2005, DCIS, 1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR-, HER2+
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May 23, 2006 02:06PM 13moons-2006Apr16 wrote:

Man ! This is scarry stuff for real ! My heart really goes out to everyone with LE.

Sounds like it's both a crap shoot and a time bomb.
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May 23, 2006 03:52PM Binney4 wrote:

Sherry, what leveled off for me was not the reaction of my body to heat, overuse, or certain activities, but my ability to keep it in control. For me that involves knowing how and when to massage and wrap, having garments that fit well and are relatively comfortable, learning to care for my garments so they give me good service and are clean when I need them (don't anybody tell Lari-Ann at Bio-Con I said that -- she thinks I'm murder on my garments!), and especially finally getting my clothing situation reasonably under control so that I can feel like I look half-way decent. All that has taken me an unreasonably long time to master, and it sounds like you're already well on your way to getting a handle on it all. Some things take longer to do than they used to, some things I can only do for short periods of time, and some things I've adjusted the way I do them. But I do lately feel like I can keep things in control enough to be dependable. (My pain went away by the end of the second week of daily therapy, by the way, and is now just part of the early-warning system I have for alerting me that the LE is getting out of hand. I know how to get rid of the pain, and that has really given me huge relief.)

13 moons, I'm so glad that you're researching all this stuff, because there are steps you can take to prevent it if you're willing, and most of all because every one of us needs to know there's help and treatment for it -- the swelling and infection is not just something we "learn to live with." Stay well!

Binney
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May 27, 2006 05:33PM sherry7 wrote:

Binney thank for talking to me in plain english, your words again are comforting. There are so many little daily things that come up that surprises me that involves another adaptation because of the LE. I am happy to see that Bio Concepts makes sleeves and gloves in colors! I plan on contacting them for prices. Dressing is a crazy problem, I have multiple items out everyday trying to put together an outfit that matches, is comfortable, and fits over sleeve properly...this gets tricky! thanks again, Sherry

let the miracles happen... Dx 9/17/2005, DCIS, 1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR-, HER2+

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