Would/does lymphedema work this way?

AuntPaula, welcome! Sorry you're dealing with this, but we're all sure here to help any way we can. I'm sorry to say that your symptoms do sound like possible lymphedema. Some of us do have lymphedema on the "no-node-dissection" side, unfortunately. When it happens, it's always a nasty surprise.  

Best bet is to find a great, well-trained lymphedema therapist near you, and get a referral from any of your doctors. Here's how to find one:

http://www.stepup-speakout.org/Finding_a_Qualified...

Let us know what you discover. Gentle hugs,
Binney

Welcome and ask any questions. The girls here are very LE smart. Please consider taking off your ring if it is tight as you may make swelling worse.

Stick arm straight up in air and pump fist slowly 25 times a few times a day to drive the fluid out of that hand and arm but don't tire arm out. Elevate arm comfortably a bit above heart level. Deep belly breaths to. See the tai chi breather thread. Yes it can be a downer but you have come to the right place and we will build you up.

Hi Aunt Paula,

A number of things come to my mind as I read your messages.

With respect to the fast-appearing swelling in your shoulder and neck, ask your surgeon whether these could be a seroma, which could be drained. Also, ask your surgeon how many nodes (levels 1, 2 and 3) were removed with the breasts. This is different from and in addition to the nodes removed as part of the sentinel lymph node dissection, a diagnostic procedure.

Have you had radiotherapy? This is a double-whammy after surgery with respect to risk of lymphedema. Breast irradiation is linked with breast/chest lymphedema (or delayed breast cellulitis) and radiation of the axilla would double the risk of upper extremity lymphedema.

Be aware of the difference between upper extremity lymphedema, truncal lymphedema, and breast lymphedema. They affect different parts of your body and will require slightly different treatment. Upper extremity lymphedema is the site usually referred to when the word is used, and there is less awareness of lymphedema of the trunk, breast and chest. 

With respect to your upper limb swelling, this could be post-operative swelling (short term) or lymphedema (long term). But either type responds well to EARLY treatment. Recent studies have indicated that manual lymph drainage started as early as 2 days after surgery and continued for six months was effective in preventing lymphedema [Zimmermann] and that wearing of compression upon the earliest indication of swelling [Gergich-Stout] could slow down or even prevent the tissue changes that result in later stages of lymphedema. So don't wait until you are diagnosed with "clinical lymphedema". 

Good luck, and be strong. Keep us informed as to your progress and problems. You can draw on many centuries of experience to help you.

LymphActivist

www.lymphactivist.org

Like Aunt_Paula, I've been surprised by post-surgery issues.

In August 2013, I had a bilateral mastectomy with 3 sentinel nodes removed on my left and
right sides. Radiation wasn’t necessary and I chose not to do reconstruction.  Despite taking things quite gently, within weeks of surgery, I
had seromas, then cording and persistent swelling that were helped a bit by pt and mt started about 8 weeks after surgery.  Seven months later, I continue to have swelling under one arm and
across my chest to the other side and some cording that flares up that my pt says is likely caused by truncal
lymphedema. So far, I haven’t had a problem with lymphedema in either arms. I’ve had conflicting
advice – one pt advised me to cut back at work during flareups and another
felt that resuming pre-surgery exercise and a full work schedule might help with the
swelling.  My surgeon wasn’t concerned or supportive. I’ve been doing MLD daily
and exercising (treadmill & adapted yoga to avoid some positions like
downward dog) but haven’t found a magic combination that works reliably, though I find Stepup-Speakout reassuring.  I have
an extra slim build and have finally found a bra by Wacoal that feels like it might help with the swelling that runs across my chest above
the scarring.   Has
anyone had cording that flared up months afterwards?  What
works for you to get it under control?  It’s frustrating that seven months after
surgery, burning, swelling and cording can
persist

jsquipu, I'm assuming you've read the StepUp-SpeakOut page about cording (Axillary Web Syndrome). You might want to share it with your therapist, as there's a link for therapists only to request videos of a cording massage developed in Scandinavia. 

Cording definitely can reappear--bummer! I hope you'll soon get relief and that you've seen the last of it.

Hugs,
Binney

i don't understand....why the LE happened on the non surgical side?? i am very curious...bc i carry everything on my left side now since i had 35 nodes taken out on my right side.

pls keep us posted....i would like to know as well.

AuntPaula, glad you'll be getting to consult with a trained therapist. Anxious to hear what she has to say--and even more anxious for you to finally get on top of this!

Hugs,
Binney

Hi- I had DMX on Jan 28th, with 9 lymph nodes removed on right side. Lymphodema started before surgery- MO says most likely from biopsies. Went to therapy several times, hen was fitted with compression sleeve, gauntlet and night sleeve. My problem is that my hand gets worse when I wear the compression garments. Has anyone else had that problem?  I will be calling the therapist for an appt tomorrow. I am also a little concerned that she hasn't given me any exercises to do. Any suggestions or advice?

Anneb - compressions garments come in different levels - some of us are more sensitive to the the level than others.  The first set ordered for me were heavy compression.  Within me driving 35 miles to my rads appt, hand had doubled in size.  Turns out that I need low level compression. (We're all so diferent!).  I do have a gauntlet that I use for some specific sports activilities but for over all gloves are much better for me. My garments are custom as I do not fit the OTS measurements availiable in low level AND I'm really weird - my hands/fingers are somewhat 'webbed' (toes are worse) so standard goves cut into the webbing causing sores.  So you may not have the right level compression or it could be a lot of other issues that you can work through and learn what works for YOU - not necessarily works for anyone  else.  Also might not have the right fit.

My night sleeve has a gauntlet style hand but what works best for me is to wear an opera length isotoner glove under it.  My CLET guy is the one who had me start doing that/gave me the medical isotoner.

We are all so different so have a lot to learn and keep learning what we have to do to live life.

Hi everyone, I do want to drop a few thoughts about exercise into the discussion, as Binney suggested. Have you seen the exercise guidelines posted on stepup-speakout?  Here's  a link: http://stepup-speakout.org/Handout%20doc%20for%20...

Exercise can be so helpful for our LE and even to help reduce our risk of getting LE after BC treatment.  But if overdone, it can have a boomerang effect, so precautions are in order.  Any kind of stress to the body sends a signal to the lymphatic system to send out reinforcements, so to speak, in the form of added lymphatic fluid, or lymph.  A cut or an insect bite is an obvious stress that sends out the 'help please' signal, but so does lifting unaccustomed weight or a lot of repetitive motion, or even a cardio session that raises the core body temperature.  

The good news is that exercise gets our muscles in motion in ways that also help to push the lymph along. Muscle action pushing against the vessels plays a key role in sending the lymph along the  lymphatic pathways.  When our lymphatic system is intact and healthy, the added lymph from exercise or weight lifting isn't something we notice, I suppose because there's adequate transport capacity and a nice balance of added lymph plus added muscle pumps to keep it moving.  With our surgery or rads-induced blockages, however, we get the added lymph volume from exercise but we don't necessarily have the transport capacity to move it out normally.  

So.....the trick is to discourage the piling on of added lymph, to minimize the overload from exercise, and we do that by reducing the 'unaccustomed' part of the exercise.  Meaning, slowly and gradually build up our strength and our cardiovascular capacity for exercise, so that when we exercise, including lifting weights or other resistance activity, we are used to the 'load' and the body is less likely to perceive our effort as a stress.  The document I linked to above explains this but more importantly gives suggestions for how to adapt a variety of exercise types and/or craft an exercise strategy so that we're doing our best to accomplish that gradual buildup.  

I have been pretty successful at this, and I was highly motivated to develop strength in my arms and torso that wouldn't trigger LE flares because I was diagnosed with LE soon after the birth of my first grandchild. The thought of limiting my lifting of anything to 5 pounds or so horrified me--Ellie entered this world at nearly 9 pounds!  So I began weightlifting in the gym, with a personal trainer to help me with form, and starting with one-pound weights.  That was about 2.5 years ago, and we have added the weights in tiny increments, only increasing weight every other week or so, so that now I'm lifting 20 to 25 lbs per dumbbell on biceps curls and can lift 50 lbs on a chest press (which uses both arms but mostly works the pectoral muscles, i.e the chest).  I travel a lot for work, so that means I miss more gym time than I'd like, and whenever I've been out of the gym for 7 days or more, I back the weights down by 5-10% for a few sessions, and then move forward again.  Sometimes it sure does seem like two steps forward and then a step backwards, but gradually, I have reached the point where I'm able to toss the kids around as I please (two of them now and well, they're still little...) and I'm strong enough to manage kayaking for 8-hour paddles, 6 or 7 days in a row.  My arm often aches after exercise or other high-load activity, but so far (knock on wood) I've avoided any nasty flares.

That's my story, but it would be so unfair to give the impression that following the exercise precautions guarantees no LE trouble, but sadly that's not the case.  Following the precautions and guidelines helps to reduce our LE flare risks, but it does not make them go away.  Plenty of highly motivated people have been confounded and frustrated by their LE, triggering LE flares no matter how cautiously they approach exercise. I wish I had a good answer for them, but I don't and the research doesn't explain it, either.  So my thought for anyone who wants to start an exercise program--it's so good for us if we can do it! --is to read about LE precautions, try to get guidance from a qualified trainer, to avoid injury that would add super stress to the body and trigger a huge inflammatory response--and proceed cautiously, wearing your compression garments, and see what happens with baby steps. If one form of exercise bites you with an LE response, try another form, cautiously, and controlling for other confounding factors such as hot weather that makes us tend to swell whether we're exercising or not.

It's important to have your LE be stable before you start an exercise program. That doesn't necessarily mean you have no visible swelling; it just means that wherever you are, you're not experiencing big changes from one day to the next.  It's also incredibly helpful if your LE therapist is full on board with your exercise program and can offer guidance, and if your exercise coach (whether personal trainer or fitness class instructor or pilates teacher, etc.) understands what LE means for your exercise program.  There's a handout for trainers and fitness teachers that is quite detailed that you can print for these folks:  http://stepup-speakout.org/Trainer%20doc%20for%20...

One other thought is that the old exercise mantra 'no pain, no gain' is about the worst approach to exercise when you have or are at risk of LE.  It's true that to gain muscle mass, the usual approach is to work your muscles to near exhaustion, which breaks down muscle fibers, which in turn repair themselves bigger and I guess stronger.  But with LE, this triggers an inflammatory response that the body isn't equipped to handle, so we don't want to exercise to the point of soreness afterwards, known as delayed-onset muscle soreness, or DOMS.  

And...I'm no exercise physiologist, nor am I a lymphedema expert, so my explanations are my best understanding of how these factors work.  The documents I linked to here have some great references to studies that can help you learn more about exercise and LE.  

Carol

Carol...thank you so much for your advice and support here.  I have learned so much from this site...especially from you and Binney.  

Anneb...I also have most of my swelling in my hand and lower arm.  I am interested that you wear your sleeve OVER your gauntlet at the wrist?  I have deep grooves there from the compression garments.  Maybe I'll try your way of wearing it....    Tomorrow, I am planning to try a gauntlet with a higher level of compression (30-40) compared to the sleeve.  We shall see.  I do have swelling in my upper arm, too.....I thought it was starting to get better and then wham....

What is the difference between a "flare" and some aching/swelling?  I don't really know if this is a flare, or if I still haven't figured out how to manage this.  I stopped doing MLD when it consistently made my swelling worse (I always measured before and after).  Since I have been away from it for awhile, and my swelling is worse, I am trying it again tonight.

I have my exchange surgery on Thursday and I am worried sick....obviously for the surgery.  I don't like surgery!!  But, I am also worried about this LE getting worse with surgery.  I won't be able to put my arm above my head (for fist pumps), and I am thinking it will be challenging to get the garments on.  That is always a wrestling match....and I am not supposed to be lifting anything....UGH! I can picture my arm swelling, and me not knowing what in the world to do about it! 

My PS said I could certainly wear my compression garments during surgery.  He said many people do, and considering they give you so much extra fluid during surgery, he thinks it is a good idea.  He forgot that I have some skin tags under my arm that he said he would get rid of for me.  If I wear my sleeve, he won't be able to get at them.  

So much to think about!  I appreciate all of you!!!  Praying for quick and easy answers for all of these things for all of us!!

Good morning everyone

I have found a "Silver Sneakers" class at a local Y. It always says to check with Dr before starting any exercise program. Any idea which Dr I should call- MO,BS.RO or LE therapist? And does anyone know anything about this program? Is it good for LE.? Thanks