Cording/Lymphedema One Year Later??

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Rockym
Rockym Member Posts: 1,261
edited June 2014 in Lymphedema
Cording/Lymphedema One Year Later??
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  • Rockym
    Rockym Member Posts: 1,261
    edited September 2012

    I am wondering if anyone has had cording a year after surgery?  I had it right after surgery, but then after a little stretching it was gone.  It seems I got it again when my breast swelled and then it was better.  Now I am a year out from surgery, 10 months from chemo and 6 from rads and it seems the cording is back.

    When I stretch my arm, I can see strange indentations.  I feel this cord start from the underarm and it goes up the forearm.  I started to see a new PT, as my last one never helped with my breast LE, and the new person told me I had been doing my MLD wrong.  This is way confusing since I have no clue if the cording is related to the LE or even if I'll ever get this LE under better control.  Any advise is appreciated.

  • kira66715
    kira66715 Member Posts: 4,681
    edited September 2012

    Rockym, it is VERY common for cording to come back--I've had it multiple times. Sometimes exercise brings it on, sometimes--who knows? I find it goes away with overhead stretching. Cording is a risk for LE, and some people swell when they have cording and it gets better as those cords--which are lymphatic vessels--get better.

    Here's the SUSO page on cording:

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

    As far as self MLD goes, the International Best Practices Guideline says that it's never been proven that we do it effectively, but it's worth us trying and we should spend around 10 minutes on it/day. There are a number of approaches, as far as the strokes go. The sequence is important: clear neck, work on the abdomen, clear the good axilla, move the fluid across the chest to the good side and down to the inguinal nodes on the bad side, then do the arm.

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  • Rockym
    Rockym Member Posts: 1,261
    edited September 2012

    kira, thanks, I thought the cords were some type of scar tissue.  I've read about them before, but I didn't know they were related to the lymphatic system.  I guess that would make sense with what I've been dealing with for the past three months.  Heck, I can even feel something in the area of my shoulder blade that pulls when I stretch.  I think something is going on back there too.  I'll look at the SUSO info. too.

    My RO had me try Trental and Vitamin E and I thought since the cording started after the meds, that maybe they were the reason.  He told me if I didn't see improvement in the breast after a few weeks I should stop the meds.  I'm now happy to do so since they gave me a headache and six extra pills a day is a pain.

  • mags20487
    mags20487 Member Posts: 1,591
    edited September 2012

    yeppers..happened to me rockym...my "good" arm had terrible  cording after surgery and therapist helped me stretch away those cords.  Got LE in the bad arm starting during rads and about a month ago the cording returned to the "good" arm almost 1 yr later.  Now I am bilat LE..for me the severe cording in the arm could be followed from auxilla to hand in both the arms before the LE popped up.   It was def a precursor to the LE

    Maggie

  • Rockym
    Rockym Member Posts: 1,261
    edited September 2012

    Just looked at the SUSO link... my doctors never told me anything about any of this.  I believe all I heard after my surgery was to not raise my arm above my head for a week.  If I knew how delicate the area was for the future, in regard to cording and LE, I would have protected myself a bit more.

    Mags, sorry you are dealing with this too.  I hope it's not a precursor for LE of the arm for me.  I was measured last Friday and the only thing I'm dealing with is the breast and axillary area.  I'm so envious of the ladies who write that MLD, compression and other methods gets their LE under control.  I haven't had any luck since this started.  What I really want is even breasts like before and to be done with this cording thing.  It was kinda freaking me out before kira and you wrote back.  Thanks.

  • Rockym
    Rockym Member Posts: 1,261
    edited September 2012

    If you don't see a reduction from swelling, does that mean you aren't doing your MLD correctly?  Does self MLD usually reduce swelling in the breast and axillary??

  • kira66715
    kira66715 Member Posts: 4,681
    edited September 2012

    Rockym, MLD is helpful, but often more tools are needed--such as compression. The sequence for breast MLD is similar to the arm one I posted, only you move the breast fluid down to the inguinals on the "bad" side and over to the the axilla on the "good" side.

    MLD is just part of the treatment plan.

    Kira

  • Lee7
    Lee7 Member Posts: 657
    edited September 2012

    Rockym,  I have persistent cording a year and a half after my surgery. I haven't been able to find a LE therapist ( have seen 4 now) that could do anything about the cording to break it up.  I also don't have much luck with MLD, and I think I am doing it correctly. :( 

    I do have two compression sleeves but both will bind at my elbow and I seem to get more swollen there wearing them.   I'm really not sure what the answer is.  I just keep hoping eventually my lymph will find a new route to drain out of my arm. 

  • doubleAA
    doubleAA Member Posts: 37
    edited September 2012

    I am very confused. I had very mild cording after my UMX. I had six nodes removed. My BS told me that it was from scar tissue and never mentioned the lymphatic system or any relation to le. Actually I have been told that I am at a really low risk for le and the hospital that I was at now feels that those with a low number of nodes taken out can have blood draws and pressure taken in arm(s) that had nodes removed. As I had a UMX I still prefer to have all that done on my non surgical side. So am I really at a more increased risk of le as I had mild cording ( which amazing pt got rid of after one session but if I didn't do my Range of motion exercises would come back.) I still feel tight under my arm at times. I exercise regularly walking/running/ elliptical/biking but have been afraid to add weights back in. Saw some of you lady talking about your guns and the gym and was wondering specifically what type of arm exercises you do. I used to lift weights on a frequent basis -was a big Cathy Freidrich fan. I have lost so much strength on my right side so any help in getting that back would be appreciated. Should I go see the pt's at my hospital for a measurement? Looking to you ladies for sound advice. Thank you!

  • kira66715
    kira66715 Member Posts: 4,681
    edited September 2012

    Double AA, Carol57 has written some amazing posts about exercise. She just reported from the NLN that the word on weight lifting is to go slow and low to avoid the inflammation associated with heavier weights.

    Cording is a risk, but also, many, many women get cording.

    There is still a risk of 6-22%, depending on whose study you read, of getting LE after SNB. I got it, so for me the risk is 100%.

    There is a weight lifting protocol, the PAL protocol, developed for women with LE and at risk of LE, and in general, it was twice a week, low weights, few reps, and any certified trainer can get a copy of it from Katie Schmitz at U Penn.

    I'll try and search for one of Carol's amazing posts.

    Kira

  • kira66715
    kira66715 Member Posts: 4,681
    edited September 2012

    Searching for Carol's posts: here are two:

    Agada, there is no evidence to show that exercise prevents LE, but there is a strong association between exercise -- including strength training -- and reduced risk of LE for those as risk, and reduced incidence of LE flare-ups for those who have been diagnosed with LE.  Association means the relevant studies point to reduced risk, but the risks remain nonetheless. 

    Having said that, there's a whopping huge common-sense relationship between exercise and LE.  Muscle movement against the lymphatic vessels is what pulses the lymphatic fluid (lymph) through the lymphatic system.  So movement of muscles promotes lymph movement.  Strain of any kind--including picking up something too heavy for the limb or trunk--signals 'need help' to the lymphatic system, which in turn sends more lymph to the rescue. So--here's the common sense--doesn't it seem logical that if we condition our limbs and our trunk to be able to bear heavier loads, the lymphatic system will in turn not get so excited when we lift, push, or pull something heavy?  The exercise studies of resistance training are showing that this bit of common sense does indeed translate to reality.

    Exercise can bring its own LE risk, though, so we have to work on getting its benefits while minimizing those risks.  Raising the core body temperature signals 'stress' to the lymphatic system.  Lifting a dumbbell that's too heavy (haven't worked up slowly to that weight) signals 'stress.'  Repetitive arm motions (like rowing) signal 'stress' to the lymphatic system.  So--be careful about exercising in very hot conditions; drink lots of water to rehydrate; wear wicking fabrics; get in a swimming pool for exercise; follow safe weightlifting guidelines that include adding weight in small increments and avoiding bodyweight or resistance-band exercises where we cannot measure the amount of weight load (nor add to it in small increments).

    Patients with LE wear compression sleeves and gauntlets or gloves while exercising and weight lifting.  At-risk patients without a LE diagnosis should consult with a lymphedema therapist to help decide if compression is needed.

    On the rowing, my common-sense answer is to get the trunk and arms nice and strong before doing any extensive rowing, so that the unavoidable repetitive motion is tempered by having plenty of strength to push/pull the oar/paddle.  I just completed a five-day kayak trip, paddling as much as 7 hours a day, and I am convinced that my LE would have exploded on me had I not been following an LE-safe weightlifting program (PAL Protocol-compliant) for six months.

    Would rowing or other exercises ever cause LE?  I don't think we have an answer on that.  If you are already at risk from BC treatment and surgery, and especially if you are pre-clinical (no visible swelling, but the arm can have up to 30% extra fluid without visible swelling), rowing or similar hard-work exercise might be that straw that break's the camel's back.  (Funny saying, now that I think of it--camel retains water in the hump...).  Or, you might unfortunately be genetically predisposed to getting LE (research supports that), and while the rowing might precipitate the onset of LE symptoms, it would not technically be the cause.

    Clear as mud, no?

    Carol_photo_from_chris-facebook carol57 MI Joined: Sep 2011 Posts: 1,235
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    Aug 28, 2012 09:56 PM carol57 wrote:

    Linda, the PAL Protocol stands for Physical Activity and Lymphedema, and it is a set of weight-lifting guidelines developed by Dr. Kathryn Schmitz and her research team at the University of Pennsylvania here in the US.  The research goal was to find out if the age-old advice is accurate that those with or at risk of LE should not lift more than 10 or 15 pounds.  So they did an 18-month trial to introduce women with LE to weight training, crafting guidelines as they went, based on what lifting behaviors triggered problems, and what approaches did not.

    There is some controversy over whether the study authors over-reached in their conclusions about whether weight lifting can protect us from LE. One school of thought is that by conditioning our arms and upper bodies, we prepare the body to heft greater weight without signaling 'stress' to the lymphatic system.  This appeared to work for many in the study, but it did not protect everyone--some participants had LE flares with exercise, no matter how carefully they followed the guidelines.

    One good resource for understanding what the PAL Trial tells us is to read an article that Dr. Schmitz wrote after our friends at Step-up, Speak-out.org challenged her on some of the journal article's interpretations. They were particularly concerned because the media at the time (2009) picked up a few sentences in the original research publication and published headlines that 'weight lifting can cure LE' or 'can prevent LE' which are certainly not true. So in this article--www.lymphnet.org/pdfDocs/Weigh...--Dr. Schmitz explains what, in her view, the Trial results do and do not mean regarding LE risks.

    There are so many variables in any kind of exercise--how fit you are when you start; how often you do it and how much rest you get in between; form--do you have someone else watching to make sure it's as good as you think it is?--and in weight lifting, how fast you are adding weight, and whether you are doing lots of repetitions with light weight, or fewer repetitions with heavier weight. So there's never going to be a one-size-fits-all effect of weight lifting or any other exercise on our LE.  Oh and of course, read any ten posts in any LE thread and it becomes obvious that we all have different manifestations of our LE!  No wonder the LE outcome of exercise is so individual.

     Carol

    We need to gather together these amazing posts, and pin them, IMO

    Kira

  • kira66715
    kira66715 Member Posts: 4,681
    edited September 2012

    Another amazing Carol post:

    Carol_photo_from_chris-facebook carol57 MI Joined: Sep 2011 Posts: 1,235
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    Jul 14, 2012 07:05 PM carol57 wrote:

    I wrote this long post a while back, to answer some questions from women at risk of LE. So some of the comments talk about avoiding  LE, but the information is just as valid for those of us who already have an LE diagnosis and want to build strength safely.

    Guidelines for cautious resistance training--designed especially to address LE risk--were developed as a product of an 18-month research trial called the PAL Trial (for Physical Activity and Lymphedema).

    Here are some highlights, and I do recommend that you read the related journal articles--I'll put links at the end here.

    --Start with very, very light weights and move up very, very slowly.  I was lifting extensive weight prior to surgery, but when I returned to the gym afterward, I started with one pound dumbbells for my arms and other upper-body lifts.  Talk about feeling silly...but LE is nothing to fool around with, so I gritted my teeth and decided who the heck cares what it looks like.  Then I added weight slowly, meaning one pound per week, initially.

    --Use dumbbells or other weights that are marked on them.  Items such as soup cans are handy, but their weights are not standard, so they make it very difficult to know for sure you're adding to your lift load in small, measured increments.  Also, for best form (and form matters, to avoid injuries, LE-related and otherwise), it's best to use dumbbells, for a better grip.  One option is to purchase a set of power blocks that go as low as 1 lb.  If you google it, you'll see what I'm talking about.  That's what they're using in follow-up research being done by the PAL Trial researchers now.

    --Resistance bands are not a safe way to do strength training if you have or are at risk of LE, because you cannot know exactly how much resistance you add or subtract when you alter your hand placement or move to a more resistant band.  One key tenet of the PAL Protocol is that they determined that women have the least chance of triggering LE (or making it worse if they already have it) when weight is added slowly and progressively, in small measured increments.  Resistance bands are tempting because they're inexpensive and easy to store, and if you travel, they go right along with you.  But--they invite more LE risk than relying on measured increments from dumbbells.

    --And then there are those body-weight exercises, like planks for our abs and pushups for the pectoralis area.  By now you can predict what I'm going to say--not such a good idea for us, because--you guessed it--impossible to say how much added resistance you get when you alter your position to make the move harder. 

    --This is not to say you NEVER use resistance bands or do push-ups, and even Dr. Katie Schmitz, the lead PAL researcher, has said it's possible...eventually.  The idea is to build significant strength using the (broken record here, sorry) slow, progressive method with dumbbells.  Then--and seriously only when you have a good long track record of adding your weights slowly--might you begin to add some bodyweight work--and that only if all through your program so far, you never triggered any LE symptoms (ache, heaviness, tingly, and of course, swelling).

    --Then there's the question of wearing compression while working out.  Anyone who already has LE should be wearing a compression sleeve and hand compression (glove or gauntlet) while lifting weights, and probably while doing cardio work, too (because just raising your core body temp during cardio adds load to the lymphatic system, and then you add to the challenge by using arms for long, repetitive motion in some kinds of cardio work).  The National Lymphedema Network says that whether to wear compression or not is a judgment call when you do not have LE--but are 'just' at risk (oh, and risk after SNB is not trivial--up to 17% for arm LE and much, much higher for breast LE if you had SNB and breast-conserving surgery, and especially if rads are thrown in).  To make that decision, it's best to consult with a qualified LE therapist, generally a PT who is also a certified LE therapist, hopefully with the letters LANA after his/her name.

    (I'm killing you with info here, I know, but LE rots and we do what we can to avoid it, or to minimize flare-ups when we do have it.)

    It's a great idea to work out with a certified personal trainer at least a few times, and a trainer can request the actual PAL workout guidelines by going online here: 

    www.penncancer.org/physical-ac...

    I live in a rural part of w. Michigan and am nowhere near any gyms that offered PAL-compliant personal training, so I recruited support from two hospitals and brought one of the PAL researchers to town last December, for a one-day workshop she gave to a group of personal trainers and LE therapists. So now we have some good PAL training resources here.  You could do that too, and if interested, I can get you started on how to make it happen.

    To read the original PAL report explaining how strength training guidelines were developed for breast cancer survivors who have lymphedema:

    www.lymphnet.org/pdfDocs/PAL_N... .

    Then there is the PAL-Trial evaluation of weight-lifting risks to women at risk of lymphedema,  available at: jama.ama-assn.org/content/earl...

    Lead researcher Kathryn Schmitz wrote an article clarifying misconceptions about the PAL Trial results, which were poorly reported in the media when the study was released:

    www.lymphnet.org/pdfDocs/Weigh...

    The Livestrong program is great, definitely designed for cancer survivors, but their trainers get only a little background in the PAL guidelines.  So at minimum, I hope you'll read the resources I linked here, so you'll know what to ask about and when to object if an unwitting trainer suggests a move that's not really good for you.

    Do lift...but do lift intelligently!  40% of us will get LE after BC treatment, and the risk is particularly high during the 3 years post-treatment.  Some lucky women in the 60% club can lift, push, pull, do pushups and yank on resistance bands and never get LE.  No one knows why some get it, some don't.  You cannot know if you're in the 40% or the 60%, but being careful to do smart weightlifting could help nudge you away from the group that gets this crazy condition.

    Wishing you only the best--

    Carol

  • Rockym
    Rockym Member Posts: 1,261
    edited September 2012
    Great information!  If I knew more before my swelling, I wonder if it may have been avoided.  I had a fine needle aspiration the first week of May and our weather was over 100 degrees while I was out walking for exercise.  A few day before my swelling, I was back at the gym doing tricep presses with almost my full body weight.  All three of these things probably pushed my system over the edge, but could have been avoided (maybe not the biopsy) if any one of my doctors gave me a LE sheet after surgery a year ago.  Don't you think that should be normal standard of care?
  • doubleAA
    doubleAA Member Posts: 37
    edited September 2012

    Wow!! Thank you for all the great info. This is all so overwhelming, but with knowledge comes power. I think I'm going to insist on seeing the pt's at the hospital they are trained le specialists. So I guess using the elliptical and using the arm are not a good idea?





  • BeckySharp
    BeckySharp Member Posts: 935
    edited September 2012

    doubleAA--I had cording and started out using the elliptical without the arms involved.  As the cording resolved I would use the arm bars every third minute.  Now when I do 45 minutes on elliptical I will take a break from the arms about every fifth minute.  So far no problems.  But listen to your body.

  • kira66715
    kira66715 Member Posts: 4,681
    edited September 2012

    Rockym--I also got no information, and was hanging from door frames within a day of surgery and got a whopper axillary seroma and about 12 cords--and then I went to see a PT who was supposedly trained in LE, and she had me doing more repetivtive motion and stretching, and I got some bug bites, and LE.

    I may never have dodged the bullet, but I was set up to overwhelm the system, with the seroma (not aspirated for 5 months as my breast surgeon asked ME what to do about it....) and the advice I got from the PT was plain wrong.

    Now, I know to avoid putting stretch through the axilla for 10-14 days post op and aspirate axillary seromas. Wish I knew this in 2008.

    Back to exercise: Carol and Becky are experts on it, and I think there's a real risk of avoidance and there is a safe way to exercise.

    Kira

  • Rockym
    Rockym Member Posts: 1,261
    edited September 2012

    I've exercised most of the summer, but with lighter weights (and yes, it seems strange and almost embarrassing).  I used to bench press 100's of pounds and now I am working up to what feels like a normal light amount.  My PT seems knowledgeable enough so I am also listening to his advise.

    It's true that maybe I would have got this anyway.  Sometimes I try to look at the silver lining and think that it's better I got this now while I still made the connection to BC instead of later when I was more on my own.  It's also my left breast/side which is a plus because I'm right handed and the final silver lining....

    If it stays under control as a D cup, then I got half a boob job for free (I just put a Walmart cushion in the right side of my bra) :-).

  • carol57
    carol57 Member Posts: 3,567
    edited September 2012

    Let's look for a bright side. The good news on doing the elliptical without the arms is that if you just keep them at your side, meaning don't hang onto anything, it's a great balance exercise that also works your core!  Whether walking outside, walking on a treadmill, or working on an elliptical, I pump my unaffected arm just as I would if walking, and I put my LE arm on my hip, sometimes tucking my thumb into the waistand of my shorts/pants to help support the hand.  Some with LE walk using poles to support the arm, and I'll try that sometime, but it would be a bit problematic on an elliptical!

    Rockym, did you see the video I linked to on the Frustrated with LE and Exercise thread?  Debra Cordner Carson has leg LE and came back after that diagnosis to take 13th place in the Cross-Fit competition. She talks about the frustration of the diagnosis, quitting competions entirely, and then deciding to not let LE rule her life, and returning to elite-fitness competition.  When I think about how I have to take lifting precautions with my arm, I am humbled to realize that she has to worry about her leg with almost any kind of weight lift.  At least with the LE arm, we can continue to work pretty hard on most of the lower-body moves without concern for the baby-increment approach. And the weights she is lifting on the video I saw at NLN would likely look very familiar to you!

    Carol

  • BeckySharp
    BeckySharp Member Posts: 935
    edited September 2012

    I do not let my arms hang at my side when I exercise.  My hands swell (not LE swelling) if I do.  I swing them with my forearm parallel to the gound even on the elliptical.  Actually even easier than letting them hang.  I do pump my arm every 10 minutes when doing any kind of exercise--even walking (as per instructed by my therapist). 

    Rockym--keep working up slowly and you will get there.  I am now up to 10 lb wts starting from 1 lb last year. 

    I attended a session at NLN on exercise.  I will try to report on it in the next few days.

  • Rockym
    Rockym Member Posts: 1,261
    edited September 2012
    carol, thanks for the information and Becky thanks for the encouragement.  I'm using 5 pound weights right now.  I'm not sure if I will ever get back to doing a lot of upper body.  I asked my PT about cross cables since that was one of my favorites and he said I could try and if I see swelling then I could stop.  I feel best avoiding it for now since I don't want this going to my arm.  The cording right right hurts and although it felt good after he did the massage, the pain came back later that evening.
  • Denise-G
    Denise-G Member Posts: 1,777
    edited September 2012

    I discovered a couple of lumps along my MX scar before I started rads, which was 10 months post MX.  They were in a line under the scar and felt like a noodle with a break in the middle.  My MO and NP thought scar tissue as did the RO, but all said, "we'll keep an eye on it." Of course, it all terrified me.  I didn't want tumors obviously.

    I was telling my LE Specialist about it today.  After her examination, she said it is cording or Axillary Web Syndrome.  After she explained it, it was those cords exactly.  She showed me stretching exercises that will help.

    She just got back from a large LE conference in Dallas.  She said that they are thinking cording starts when exercise is done too soon after MX.  The lymph system goes crazy and doesn't know what to do.  People who wait about 7 days after surgery to start exercises have less chance of developing cording new research shows.  I know I started exercise the day after surgery...

  • jpmomof3
    jpmomof3 Member Posts: 643
    edited September 2012

    I also just posted on the grrrr LE thread. I recognize a few names here too this is my first post on this thread. I have fairly bad cording which was just worked on this past week by a LE specialist. She broke up a bunch of my cords and my range of motion is much better and my pain is almost gone.



    But side then either because of the treatment or because I am concentrating on it I have noticed that the skin on my affected arm has a different texture and tonight when I wore a fairly snug jacket I had lines imprinted on my forearm from the clothes that were not present on the other arm. I am unfortunately fairly sure that I am getting the beginning signs of lymphedema. Did anyone's LE start this way? My arm is not measurably different in size yet but I very much fear this is just the beginning.



    I hate this. I hate this with all my heart. This disturbs me more than the mangled breast and losing my hair. I am just starting radiation too so there will be even more damage going on to my axillary nodes since I am getting radiation treatment there. I know the this is all to save my life but goddamn I hate this.

  • Binney4
    Binney4 Member Posts: 8,609
    edited September 2012

    jp, I hate this for you with all my heart too.Frown You need good care starting now, so get a referral for LE evaluation and treatment. It will really help, and you'll soon be on top of it. Complete LE therapy can't be done during rads because of tender skin, but a well-qualified LE therapist can provide you with sleeves to use during treatment to help control new swelling and tips for keeping it at bay while you wait for rads to be done.

    There really is help for this, and it really does get manageable.Smile You can do this! Tell us how we can help, please.
    Gentle hugs,
    Binney

  • Rockym
    Rockym Member Posts: 1,261
    edited September 2012
    jpmomof3, I worry about my arm a lot too.  My measurements showed that all was okay, but my watchband made some marks today and my heart skipped a beat.  I am so careful now with my arm, but I know your frustration.  Some have said the arm started with cording, but I've had the cording come and go twice now and all way okay.  I'd say to keep a close eye on it.  I know what you mean about the indentations.  I even get them on my breast when I'm sleeping and it does happen with the other breast.
  • jpmomof3
    jpmomof3 Member Posts: 643
    edited September 2012

    Thanks ladies for your words of support. I am just in the obsession and anger phase. It feels like a barely milder feeling like when I was diagnosed with breast cancer. I am obsessing over the arm. Now I am sure it is an issue. I notice it after getting a bunch of the cords broken by a LE therapist. It was more notable last night and this morning than ever. Someone on another thread mentioned that some are recommending to NOT break the cords. I wish I had known that beforehand. It helped my pain and range of motion immensely but I would have dealt with that if it meant not triggering the LE. Chances are it would have happened anyway so I know I should beat myself up about it but I cant help it. I even asked the therapist beforehand and she said that the lymph vessels weren't working anyway so no harm in breaking them. Now I question that.



    Goodness I hate breast cancer.

  • jpmomof3
    jpmomof3 Member Posts: 643
    edited September 2012

    When do you guys wear you sleeves? I am getting. One this morning. All the time? Just during exercise? This stuff is all so confusing and stressful.

  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited September 2012

    I just realized this weekend that I have a little bit of cording.   I dont know how long its been there...I always felt my armpit area looked wierd...but never knew why...Last week I had looked at some of the pictures of cording on SUSO.

    So when I looked at my armpit on Saturday...I thought- wow- its cording : (

    That could be affecting my range of motion that I didnt realize also was bad until my LE therapist pointed it out.  Both my good & bad arm I dont have full range of motion of

  • Denise-G
    Denise-G Member Posts: 1,777
    edited September 2012

    My LE was pretty much under control all the while I sat around during Chemo and Rads.  But now that I am getting back to some "normal activities" it is acting up.  I wear my sleeve or am supposed to wear my sleeve when I am gardening, yard work, exercise, or anything really strenuous.  Like the other day I painted a closet - but it was with my right arm.  Didn't think it would bother the LE left arm, but it does. 

    I have had to change my thoughts on Lymphedema.  I really hated it at first.  I was so mad at it.    I thank God I am struggling with the LE because my lymph nodes caught the cancer.  They were doing their job.  Some people's nodes don't catch it and it goes directly to Stage IV.  I was held at Stage III thanks to my 9 nodes.  Now I know this might sound hokey, but it works for me:  I thank the nodes that "lost their lives" to save mine. 

  • Rockym
    Rockym Member Posts: 1,261
    edited September 2012

    Denise, once my anger, resentment and all those other feelings calmed down, I also had to find some silver lining.  That is usually the way I look at life, but when we are told that LE is a chronic condition and that it doesn't go away.... well that can piss any of us off big time.  Just when you think the whole cancer things is almost done and you're out of the woods, then you have a whole new thing to deal with.

    I also caught mine early and started doing massage and stuff from day one, so I now think I am lucky that it doesn't look like some of the pics I've seen.  I also don't look like some of the ladies I've seen at my PT.  I was stage 1 from the start and there is this small part of me that thinks it may go away as it has for some of the other breast LE ladies.  If not, I call it my free half boob job and I move on.  The cording I have now hurts when I stretch way above my head.  My friend said, "Then don't stretch above your head."  Of course we do this to make sure it doesn't get worse. :-)

  • jpmomof3
    jpmomof3 Member Posts: 643
    edited September 2012

    Ack, I have always hated that comment "well just don't do ...". When you do something that hurts. We should be able to stretch above our heads dammit! This BC stuff has all been so rotten getting the beginnings of LE is like shit icing on a vomit cake (as someone else said somewhere). But Denise, you have the healthier attitude. Once i get over being pissed off that is the way I should think about it and hope to at some point. Rocky, like you I hope that this won't progress at the least and certainly can hope that it will go away. It is possible that what I am seeing here is due to increased inflammation from having those damn cords broken. And maybe there is still a chance my body can re route this fluid. But I am just at the beginning of radiation and have a lot more damage to be done to my poor lymph system before any of this is over. I guess it will never be over really.



    I got measured for my sleeve. Still not sure exactly when I will use it. What I am seeing with my arm doesn't get that bad and doesn't change all that much with exercise etc yet but it probably will. Just need to watch it and adjust my treatment accordingly. Off to do some self MLD for today. I am a little concerned about doing it on radiated skin though. I don't have any redness yet but don't want to make it worse. Ahh isn't this fun...

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