tight arm - how do I know if I have beginnings of LE?

ailenroc · January 2009

I had bilat mx 5.5 mos ago and exchange 10 days ago. Right arm had SNB, 0/5. Within a week or so after mx I developed cording in the right arm. That resolved itself after about 1.5 months and lots of massage.

Around month 3 post mx, I thought that my right arm started to feel different than the left, tighter; bra band always seems to be tighter on that side. I have no visible swelling, my bs dismisses the idea ("if you stress about it you can get it"!). I started also around month 3 to have 2 very palpably swollen lymphnodes under the right axilla. Ultrasound indicates they are functional, just swollen.

Can this be an indicator for early LE? Post exchange right side produced double the fluid (8 days) than the left, suggesting to me that the lymphsystem in the right is not doing its job as well as in the right.

When typing, I alwasy feel I can't keep my right arm for long in that position but need to lift it up and move hands.

Are any of those issues indicative of early LE? How does one diagnose early LE?

getwell · January 2009

Hi,

You can go to a LE therapist for evaluation. I had a very slight swelling on my hand and my PT sent me to a LE therapist. It was early stage LE.Phooey!!!! She showed me how to do a message and it helps. She suggested wearing those horrible elastic sleeves but they make me feel worse. Good Luck..

Binney4 · January 2009

ailenrock, hello!

The swollen nodes are not indicative of lymphedema, but everything else you mention certainly is. The sooner it's evaluated and treated the easier it is to get it into control and keep it that way. You'll need a referral from anyone on your medical team to a fully-trained lymphedema therapist. Here's some information on how to find one near you:

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

As for "If you stress about it you can get it," we'll just have to enter your bs into our hot competition for Most Idiotic Statement About Lymphedema By a Medical Professional. Tongue out However, I should warn you that the competition in that category is very tough, and even this early in 2009 we already have some challenging entries! Laughing

Do keep us posted, Ailenroc!

Getwell, goodness, I'm sorry about the horrible sleeves. They really can be, but maybe a better fit, or even a bit of color choice Smile would make it easier to do what you need to to keep the LE under control. Here's information on making sure the fit is right:

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

There are several companies that offer colored, or even patterened, lymphedema garments, and if they fit well they'll be a lot more bearable. Let us know how we can help, okay? This is a tough diagnosis to deal with, but there's a lot of hope in staying on top of it.

Be well!
Binney

ailenroc · January 2009

Thank you for the responses ladies. Always very helpful.

Binney, do you know if the incidence of cording or axillary websyndrome is correlated to later LE? Any studies you have seen?

The docs are so woefully uneducated on the topic ("as long as your arm is not swollen, you don't have LE") that they are in no position to educate the patient. It is rather odd how one is always for any health issue told "talk to you doctor" ... but what if my doctor doesn't know anything? On this topic that would include my bs, ps, and onc. All not bad people ... but hard to believe.

ailenroc · January 2009

Binney: one more question for the expert: do you have a list of key links to access the best LE info fast. I've seen links in many posts but don't know where to start; probably some are better than others. If I have an hour or so, what should I look at?

Also: do you know if nutrition makes a difference? Low sodium I would imagine; but how about protein? If lymphfluid is protein rich would it be better to have a low protein diet?? I tend to be on the high end due to exercise.

kira66715 · January 2009

Ailenroc,

Yes, cording is associated with an LE risk: the few medical studies said it wasn't, initially, but the physical therapists who follow patients have always felt it was. Now, there's an international best treatment guidelines document, that includes axillary web as a risk for LE. It's linked on the home page of step up speak out:

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

The link is on the right, click on Concensus Guidelines.

Also, Jane Kepics, a PT re-wrote her original article on axillary web, and it's on the Vodder site. It's a bit medical, but the first paragraph is very clear

http://www.vodderschool.com/treatment_of_axillary_web_syndrome

Axillary web syndrome (AWS) is a painful and functionally limiting complication of breast cancer treatment most likely due to lymphatic thrombosis after lymph node resection. Patients describe cord-like structures in the axilla extending into the distal arm causing pain, limited shoulder ROM and functional compromise. Medical literature claims that AWS is self limiting, resolving in 2-3 months regardless of treatment. Physical therapists challenge that claim, suggesting that when untreated, pain and disability can last for years. Early rehabilitation intervention is advocated to reduce pain, normalize ROM and return to premorbid function. Until recently, information regarding the signs and symptoms of AWS was limited and treatment documentation was virtually nonexistent. The purpose of this case report is to describe the clinical problems associated with AWS, to discuss the need for early rehabilitation intervention and to describe the use of manual treatment techniques to treat a patient with AWS after axillary lymph node surgery.

It is my task to write the Axillary web page for the step up speak out site, and it's long overdue, so I'm sorry all the data isn't conveniently in one place. I think you'll find the site and the links helpful in getting information on LE

Also, there's a downloadable pdf from Living Beyond Breast Cancer on LE:

http://www.lbbc.org/content/media/living-beyond-breast-cancer-s-guide-to-understanding-lymphedema.asp?section_tag=G

I hope that helps get you started.

Kira

ailenroc · January 2009

This is very helpful Kira. Thank you so much.

ailenroc · December 2010

Here I am about 2 years after my original post and ... I still could use some help:

My right arm never recovered after a bilat mx and right SNB, five nodes removed (all clear, no rads). I have been reovering well since then; lots of rehab work; lots of exercise thereafter; I even kayaked around the Napali coast of Kauai. BUT - my right arm still hurts; just got home from the gym and as usual my armpit feels painful in the area where the lymphnodes were removed. Whenever I am exercising, I feel myself pulling my shirt or bra away from the scar area about 50 times as if it were too tight. This has become an unconscious move because I feel uncomfortable but when I see my surgeon she say all is well; I don't have lymphedema; I am just thinking too much about it, blah blah. Given what I've learned about LE, it does not look like I really have it; my arm is never swollen; it's just that I feel like I have a softball pressing into my armpit when exercising.

Any advise would be much appreciated.

kcshreve · December 2010

Each person has swelling in different locations, and some swelling is moderated - but it can still be LE. And untreated, it can progress and increase. Worth considering. I think my LE is relatively mild, but it always bugs me and definitely responds to MLD massage. If it could get worse, that's the last thing I'd want - for it to worsen.

Binney4 · December 2010

Wow, amazing kayaking venture -- brava! Cool Kiss Must have been a beautiful experience. What was the best part of that trip?

Two thoughts: doctors really aren't the LE experts and they can go very far wrong, especially with diagnosing truncal LE. It can't be imaged (because the fluid isn't pooled, it's all spread out in the teensy space between the cells, so it doesn't show up), and it isn't treated with drugs or surgery, so they don't always know what to do with us.

And second: if you haven't found a great, well-trained LE therapist to do a complete evaluation, that would be a great place to start. Ask any doc on your team to "humor" you and give you a referral. What can you lose? The only way I knew I had truncal LE (in a spot just in front of my axilla) was that it hurt, especially when I was active. It sure didn't look swollen to me (until after therapy when it was reduced and I could see the difference). As KC says, MLD can make a huge difference to our comfort level, and it's easy, gentle, and once it's learned only requires self-care, not endless doctor appointments. Great to have that kind of control over your life! Smile

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

Let us know what you discover!

Hugs,
Binney

SleeveNinja · December 2010

alienroc, you might not have LE or you might have preclinical LE and it might never progress. But a eval w a LE therapist can't hurt. It will probably ease your mind and you might learn some techniques to increase your comfort or more about what to look out for should it progress.

tight arm - how do I know if I have beginnings of LE?

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