VISIBLE SIGNS OF LYMPHEDEMA - A PICTORIAL

Binney4

Welcome, Terrie!

You're so righ--our doctors can be very, very good at what they do, but they don't do lymphedema. Good for you for educating yourself about this and seeking help. Please do let us know how it goes, and also how we can help.

Be well!
Binney

dassi52

Thank you so much for the pictures! I was recently diagnosed with LE of the right hand (22 years after the mastectomy!!!) as a result of bandaging of the wrist because of tendinitis. We were all trained to make sure not to get BP or blood taken on the problematic arm, but nobody warned me about what else we had to be aware of. The dumb orthopedic MD I went to for the tendinitis didn't bother to do an intake, and when I showed him the swelling, he certainly didn't realize it was LE. Neither did other MDs who saw it, even though I kept on asking if it possibly was LE. The first one who right away realized it was my regular physiotherapist, who referred me to a LE physiotherapist. Seeing your pics, I recognize my own hand!

I am now waiting for my glove. I'm getting a sleeve for flying and in the meantime I "mummify" my hand and wrist. On top of all that, I must do physiotherapy and OT because I can no longer properly flex fingers after the hand was immobile for 3 weeks. This makes everything even harder when you can't use your hand properly, and that's in addition to the bandages. (I'm right-handed!) 

Hslew

PS I really like the forum and find it very informative. 

LindaLou53

Hslew, welcome to the forums!  Sorry it has to be because you have now developed LE, but this is a great place to find good information and people who understand what you are going through!  You are actually a good example for demonstrating that there is always a lifetime risk for LE once lymph nodes have been removed...no matter how long ago!  Congratulations on being a 22 year survivor!  That is fantastic.....just sorry that LE had to enter into your life.

We try to caution all at-risk persons to practice risk reduction measures and not let their guard down as time passes.  Of course, 22 years ago when you had your surgery it is no surprise that you did not get comprehensive information on LE.  There was just so little known then and still today we find too many medical professionals who are not at all up to speed on their LE understanding.

I hope your therapy sessions go well and you soon regain better mobility of your fingers and hand.  Sounds like you are on the right track with your therapist, wrapping and garments.  Be sure to check out the rest of our Lymphedema forum here and you will also want to see all the resource information available on the Step-up/Speak-Out website built by LE patients for LE patients.

Marcia1111

Thank you for taking the time to post this.  I had 2/17 nodes involved, so I think my risk is low, but I think about it all the time.  You have done such a wonderful thing!

LindaLou53

Marcia111, you are welcome.  I also hope you never have to deal with LE yourself, but I would encourage you to practice good risk reduction strategies.  It is not a matter of whether one's nodes are positive for cancer or not, but the actual number of nodes removed or damaged by surgery and radiation, along with each person's own unique genetic and physical makeup.   While it is true that the risk of LE rises the more removed nodes, invasive surgery or radiation a patient has, it is also true that LE can still develop in some patients who have had only SNB or limited surgery.  This information is not to frighten, but to enlighten persons so they can better arm themselves with the knowledge of how to reduce their risks.  While there is never a guarantee that the steps we take will absolutely prevent LE, we can trust that taking the time to educate ourselves will give us the best chance of keeping LE away!

Be sure to check out the Risk Reduction Strategies here on the Step-Up/Speak-Out website:  http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm

LAstar

Thanks so much for this very helpful information!

Victoria38

Great pictures and info, thank you!  I need to share this with my oncologist, who doesn't really get the full picture.  Thank goodness for his nurse that suggested the Lymphedema Clinic to me.  Boy, when I got there, they sure took notice!  Five full weeks of 24/7 bandaging and MLD therapy.

Also of course LE can result from chemo alone, if the chemo damages the nodes, as was my case.

Marple

Bumping up for a friend.

lago

Just a reminder that lymphedema can be much more subtle than these pictures illustrate. Most people wouldn't have even noticed mine. My onc diagnosed mine from this picture. The arm on the right side of the photo (my left arm) is the one with LE. Notice you can't see my veins on my wrist like you can on my other arm. Arm is also slightly bigger in the lower half… but since I'm a righty usually my right arm is bigger.

PinkHeart

Lago,

Thanks so much for posting your LE picture!  I'm with you on the subtleness of LE and that it needs to be recognized and treated no matter what "stage."  Subtle LE could be just as painful as extreme LE for a given patient.

Wow, your onc diagnosed you?  Mine was clueless along with the first plastic surgeon.  Breast surgeon did discuss it.  Fortunately, now have a great PT-CLT - love her, she's really tuned in to LE and women's health.  Also, just had LNT-lymph node transfer a few months ago, so hopefully LE a thing of the past.  Time will tell. 

carol57

lago, ditto on Pinkheart's thanks for posting your photo!  Mine is subtle, too, and your photo is incredibly helpful for everyone who's poking around here, looking for some hint of what might be going on with unusual arm symptoms.

lago

Actually I diagnosed myself. Emailed my onc. She told me to email her a picture and confirmed. She is the head of medical onc at my treatment center. Goes to all the conferences (and has presented as well). I would be shocked if she didn't know about LE. Granted her recommendations didn't work for me and my LE seemed to be getting worse (more discomfort).  I then contacted my PS who sent me to an LE MD, then to PT. Haven't been to PT in over a year but I do exercise. My range is better than ever. Almost got it all back. Still not as strong as before but I'm up to 10lbs on most work outs  like before, some I have to use the 7lbs.

Ossa

Just found this post thank you Linda for the pictures.. My hand looks exactly like yours, other than it is reversed My right is my LE had,, Just got my sleeve/gauntlet yesterday.. Feels good having them on 

PinkHeart

Hi,

I have a question regarding the Step Up, Speak Out lymphedema web site.   (SUSO)

I have had severe AWS-axillary web syndrome/cording since a few weeks out from my 7.5 hour BMX, ALND (19 nodes removed) surgery, and immediately followed by a 2.5 hour breast reconstruction with direct implants (that have since failed), for a total of a 10 hour unusually long surgery.  I started PT 3 weeks post op (needed to wait until 6 drains were out), then radiation started 8 weeks post op (had to wait until PT could get my arm to lift back far enough over head for beam to target breast.)  Everyone was clueless and never mentioned AWS -- except the PT-CLT.  Don't have to stand on my LE soapbox here, because you all know that many breast surgeons, plastic surgeons and radiation oncologists are clueless about or understand the seriousness and prevalence of LE --  let alone its bitchy friend AWS-Axillary Web Syndrome.

I haven't reviewed the SUSO site for about a year, and just went there again today.  I noticed in the Highlights column on the left that the following statement is now in bold letters:  "... have concluded that axillary web syndrome is a risk factor for lymphedema."  Further down, #3 states "Cording is associated with the risk or development of lymphedema."  (maybe it's always been there but I missed.)

Do you know of any additional studies or journal articles that are more recent that you could direct me to relating to this (personally experienced) fact about AWS and LE? 

Have any of your surgeons, rad oncs, etc. made these same statements about correlation between AWS and LE? 

Perhaps Dr. Corrine Becker or her surgeons that have trained with her? 

Also any new articles stating that whether cording is just scarring, or is lymphatic scarring?

I'm going to copy this and post on a few other threads.  Thanks everyone, I appreciate your feedback and experiences!

Here is link to SUSO, to the AWS page: 

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

lago

PinkHeart my understanding is it's a risk factor but not an automatic done deal. My personal experience is I had cording in my right arm (4 nodes) and none in my left arm (10 nodes). I didn't get rads but still ended up with LE in my left arm. To date I don't have any LE in my right, or if I did it was a stage 0. The cording was eventually stretched out.

It's kind of like having a family history of breast cancer. Just because you have a family history doesn't mean you will get it but your risk of getting it is much higher.

mg23

LindaLou53,

Thank you very much for the pictures!  It is very helpful and makes it much easier for me to know what to look for.   

pkdarlin

I'm new here and just discovered Lymphedema. Didn't have a clue to what it was. I had a double mastectomy January 2012. I also had 12 lymph notes taken out of left arm and three in right arm. I noticed my right arm had a little swelling in it so I ask my doctor about it and he said to elevate it when I sleep. That was about it. Now my left arm is swollen like the pictures above. I had an appointment with my radiologist and she made  an appointment to see a PT. This site has been very helpful. Thank you so much. 

carol57

pkdarlin, well, rats! I'm glad you're going to get treatment, and I hope you'll do your best to make sure that the PT in question is truly qualified in LE therapy. If you haven't found step-up, speak-out yet from reading in this forum, you will learn a lot about LE and especially how to find a qualified therapist. That topic is here: http://stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm 

Also, there's a website that is trying to collect stories just like yours, to illustrate the problem of BC patients not being told about LE and the frustrations of not having the information we need to seek proper evaluation and treatment. If you are willing to share just what you posted here, it would help that effort immensely. The site is : 

http://lymphedemaspeaks.com/  Click on 'your story' if you want to submit it.  

In any case, best wishes for the PT visit--I hope that person is well qualified--and do let us know what you learn.  And...keep in mind that Linda Lou gave us these amazing photos some time back, and she has been quite successful in taming the LE beast through therapy and compression.  LE therapy does work, and you will be able to manage your swelling.

pkdarlin

Carol57 thanks so much for the information.  I will check it out.

Patsy

mrskml

I've read a lot of books but your descriptions and photos made everything seem so clear. I will watch for these tiny signs now as my LE is not very visible either. Thanks mostly for putting yourself out there, you are very brave.

PinkHeart

Today is my one year anniversary of my LNT-lymph node transfer surgery that Dr. Kline, Charleston, SC did during my Stage 2 natural breast reconstruction surgery.

I'm so happy to report that lymphdema in my arm has not occured since! Fingers crossed this is good for life. I will still wear my sleeve to fly or drive long distance. I have a hardly used LymphoPress machine paid for by insurance ($7,000?) that I plan to donate to someone in need. My PT-CLT said I should hang on to it for a few years so will do that.


Wishing the very best outcomes possible for all other LE patients!

LynnInColorado

Great information.  Thank you!  Unfortunately the link to register at http://lymphedemaspeaks.com/ is broken and it doesn't look like there have been any new "stories" since September 2012.

kira66715

bump

mjsgumbas

Pinkheart - thanks for the positive update! That is awesome to hear. I am very much considering LVA (by-pass surgery) at the end of this month (waiting for my date). I too hope that I will have positive results. Don't mind the occasional sleeves or massage, but it gets old on a daily basis. Hope it continues to go well. I'll stay in touch & let you all know how it goes!

tessu

bump. Excellent photos

ChiSandy

I couldn’t make the three-fingered Scout sign even when I WAS a Girl Scout.

lago

BTW reposting my LE photo when I was diagnosed. (My MO diagnosed me from this photo). It's not severe but I do believe catching it early can only help keep it under control. This was almost 5 years ago. The arm on the right (my left arm) has LE:

Rowmac46

Thanks. I suspected I have been starting due to same nasty pain but wasn't sure as I am only 2.5 weeks post surgery. The pictures of the wrist especially tells me I need to call my doctor tomorrow. Again, thanks.

lago

Yes and don't let them say it's nothing.

ChiSandy

Well, mine has gone from “subclinical” to utter agony when I stretch my arm out (can’t reach the back of the fridge) or overhead--and I see stars when I dorsiflex my R hand or try to do my prescribed stretches. I want to jump through the ceiling when I touch my forearm skin or rotate the arm in either direction. It is just too exquisitely painful to do my self-MLD. I have ONE LE therapy session left tomorrow. Last Thurs I was doing well enough that the therapist said she would discharge me tomorrow. Instead, I am now in agony---and now even getting pitting edema on the inside center of the forearm. Even my loose (1” of slack) bracelet is leaving divots in my skin, as are wrinkles in my clothing. The seroma in my breast, below the radiation-fibrosed skin, is also getting point-tender.

What happened since Thursday? Well, Fri. night I took a couple of guitars in heavy cases (abt. 15 lb.total) that were propped against the wall and moved them (using both hands) less than 5 ft. on to the couch. That’s what set it off. I’m not kidding! Woke up Sat. morning and that’s all she wrote. And I still have just one sleeve, a gauntlet and a glove. (Mediven Glove just arrived Fri.--its matching sleeve was too narrow at the top--the fitter mis-measured me. My brachial circumference lies within both the upper end of “regular” and lower end of “extra wide;” when it arrived, it felt too long and rolled down, cutting off circulation--maybe even THAT did it, not to mention grating cheese, opening a jar and scooping ice cream). So I haven’t been able to wash my Juzo sleeve-gauntlet set; and the LympheDivas set was definitely too long--the entire sleeve, and the fingers of the glove (I have unusually short fingers and small hands). So am awaiting a patterned LD sleeve in Short and matching gauntlet in Small. (They don’t do custom finger-lengths). Fortunately, am able to play guitar with a gauntlet, because the Mediven glove is too stiff for me to fingerpick and its fingertips mute the sound of the strings. (I will save the glove for flight, high altitude on land, and exercise too strenuous for gauntlet or kinesio-tape). I’m hoping the therapist will call Dr. Feldman (the LE therapist who wasn’t even sure I really had LE less than a month ago but reluctantly prescribed therapy) and see if he can come up with another ICD-10 code so my therapy can continue.

I am totally bummed out--I may even have to change my BP medication because it has a diuretic--which (counterintuitively) can exacerbate LE. That means I might have to go on something stronger, which can have its own SEs.

Cancer is the gift that keeps on giving.....sort of like the Trojan Horse. (And I was only Stage IA).