When did you notice first signs of Lymphedema?

I had cording immediately right after my BMX and 9 months later after my DIEP.  Between the BMX and DIEP I worked out vigorously, including lots of upper body weights.  Two months after my DIEP I flew cross country.  A month after that the swelling was so noticable that I finally got a scrip to see a LET where my LE was DX. 

I can't peg a specific trigger - as you can see I engaged in a lot of behavior that I now know was risky.  When the cording occurred I'd did research and found info that it might be related to something called lymphedema - a condition I'd never heard of.  I repeatedly asked surgeons and PAs at the breast center about getting an evaluation with a LET and possibly being fitted for compression prior to my flight.  My concerns were dismissed.  I was told that virtually no one at the center had ever developed LE, and that I should put it out of my mind.  I was given no education about LE or LE risk prevention measures. 

In my mind, the "trigger" was the indifference and denial of my medical team about lymphedema.

I had simultaneous bmx and diep recon, and over the next three months, normal post-surgical swelling went down in all but one area on my side, below my axilla where I had snb with the surgery. My care was being managed by my PS, and he was 'sure' it was still post-surgical swelling. At about 4 months, we were talking about doing stage 2 recon work, which involves lipo, and I was worried about making the swelling worse, if it was LE, which I was suspecting after doing a lot of reading in this forum.

So I insisted on a referral for evaluation and treatment, and I went to a clinic that uses a perometer to measure. They measured my arms as a matter of routine, agreed that I likely had LE in the trunk, and to my astonishment, the perometer measured the arm on that side 10.3% larger than my other arm. The LE arm is my non-dominant arm, so normally it should be smaller, not bigger than the other arm. The swelling was not at all visible, but the sensitive perometer found it, and it explained symptoms I had not realized are typical of Stage 0, or latent LE--heaviness, tingling, and ache.  

Wrinkles to my story:  

Wrinkle #1: Before choosing the LE clinic with the perometer, I had called a much-closer CLT-LANA to ask questions and was expecting to schedule the evaluation with her. She asked if I had any arm swelling, and I said no--because it was not visible, and I did not think I had any. She then said that my under-armpit area could not be LE, because truncal LE does not exist without arm involvement. Wrong!  From reading here, I  knew that was not true, so I just ended the conversation and went elsewhere.  

Wrinkle #2: The LE clinic with the perometer is managed by a physician who supervises the clinic 6 hours a week; normally he is the hospital's wound-care specialist in their diabetes clinic. Looking at my perometer measurements, he said he wanted to do some tests, and he proceeded to press his thumb against my skin at various points along the arm. Finding no pitting, he pronounced me NOT to have LE, although he acknowledged that the perometer reading meant it was probably on its way to developing.  He said to come back in six months for another evaluation, and no LE treatment or garments were needed. ARRGGH!  

And...two weeks later, I flew across country for work, wearing an UnderArmour long-sleeve compression shirt, which was not enough compression, evidently, because my arm swelled visibly, as did my poor truncal area that started my LE journey.  I was PO'd beyond words, because there I was, in a hotel far from home, with swelling and tenderness. I knew there were techniques to help reduce the swelling (MLD) but had been dismissed even in an LE clinic, and had no LE management tools at my disposal.  

On returning home, I made an appointment with yet a third clinic, with someone who is not LANA certified and who took her LE training from a source I never heard of.  My swelling had receded by the time I could schedule with her, and she has never found but the tiniest difference in arm-to-arm measures using a tape measure. Fortunately, she fully understands the implication of that first perometer reading and my experience after that flight using inadequate DIY compression. She taught me MLD and got me in a sleeve and gauntlet, which I use for stress times, such as exercise and flying, and when my arm simply feels crappy.  

Knock wood, I rarely experience visible swelling, just aches and other sensations, so it turns out that my LE is indeed very mild.  But 'mild' doesn't mean it shouldn't be managed, and like many, I sure had to go through some ridiculous hoops to finally get the help I needed to learn to manage it on my own.

Sorry this has been long: the moral of the story is--be persistent! 

Mine started between 9 and 10 weeks post MX 3+ yrs ago.  I was in the middle of 12 weekly Taxol when it started.  (Actually it coinsided with having to start taking mega doses of K [potassium] to keep my K levels within normal - still have to to keep level in 'normal' range.)  I had done neo-adjuvant A/C and had 3 weeks off after surgery before starting Taxol.  This was during winter so I coouldn't get out and do all that I normally do so I was a 'very good girl' and did everything that is said to do - didn't help - 'it' developed anyway doing exactly as the 'experts' claimed you had to do.  Thankfully my Certified LET is not of that idea of being afraid to live.   He has always encouragged me to be as active as possible/I want to and it definately is the right 'thing' for me as I have much less issues with it during summer than winter as I'm outside most of the time living - careing for riding my horses, moving yards with my push mower (mine and several other yards but this year those who I helped out with mowing have moved away but I have made a deal with a company where I will keep his business property mowed and he will make a donation to the BC section of our local Cancer facility, fishing, anything that sounds like fun!  I have found that doing fly tyeing, rod building and tatting helps during the winter.  

I wear my day garments daily, my night garments and use my FlexiTouch daily year round but it stays under 'control' so much better during summer/living time than winter/existing time.    Is how I live 'right' for anyone else - probably not but there is no reason to blindly accecpt anyone's choices for them as being 'right' for you in anything.  Certainly learn what 'works' for others but we are each unique THANKFULLY and there is no "One Size Fits All!"

Another point to remember that some have many other health issues that will limit what is possible for them to do.   Also not everyone starts out as being an active person.

Had BMX on 11/1/10, ALND 12/6/10, several assorted skin excision surgeries for necrosis on the non-cancer side.  Began chemo delayed due to these other surgeries - in the middle of chemo, approximately 4 months after lymph nodes were removed I experienced a sudden and body-wide severe swelling event.  This triggered pretty severe axillary web and cording - LE started from there.

I was worried about lymphedema from the beginning and got fitted for a sleeve and guantlet right after radiation ended. The nurse pratitioner there was the only one who seemed to take my worry seriously. My breast surgeon said not to worry; my oncologist didn't know much about it and said not to worry; my plastic surgeon wasn't concerned. But thank goodness for the NP who also wrote a script for preventative PT which gave me exercises and taught me MLD.

In the past 4-1/2 years since then, I wore my sleeve whenever I knew I would be doing heavy chores or when my arm developed a heavy, achy feeling. MLD gave some relief, too.  But a year ago, I was switched from a desktop to a laptop computer at work.  I used the bulky shoulder bag they provided to bring it home at night and that set off my lymphedema to the point I could see the swelling in my hand and arm. I bought a rolling carrier immediately.

It's not really apparent unless I point it out to people. It comes and goes, depending on many things...weather, clothing, activity are all factors. I worry about cellulitis all the time, now.

My doctor mentioned possible side effects when she recommended I have an axillary lymph node dissection. She said some women develop swelling in their arm. The word "lymphedema" was not mentioned. Two months after the surgery I was helping my son move out of his apartment. We worked very hard that afternoon cleaning and packing. On the drive home (about a 7 hours drive) I noticed my hand and arm were swollen. I also noticed my watch was tighter than normal.

I called my doctor and they set me up with a certified lymphedema therapist. She was very knowledgable. I am thankful I found help for the lymphedema very quickly after the swelling started.

I  saw a different certified lyphemdema therapist toward the end of my radiation treatments. He was also very good but I am more comfortable having a female therapist doing the massage.

Again, I am so thankful for this group....wishing you all well!

My BS gave me a script for a sleeve after surgery sometime. He said my risk was low given only 10 nodes on once side, 4 on the other and no radiation. I started chemo 5 weeks after BMX. I thought I noticed my arm feeling a little heavy or maybe a bit of swelling but wasn't sure while on chemo… but after my 4th chemo I knew because the tendons in my arm couldn't be seen. Most people didn't see the difference but I did. Sent a picture to my MO and she said I had LE 10 node side. So far the 4 node side is fine.

The sleeve I originally got was actually too short and I had to return it. Never went back to that place again. I also told my BS office about their screw up.

My LE is managed very well. I do exercise so I think that helps. I also wear my sleeve every day. I have some thickness and a little swelling but like I said most people wouldn't even know if I showed them my arms. I caught it fairly early.

I had simple LX with SNB....2 nodes out ( One was the plan so not sure what happened there, but ..)
All looked fine to me except for some normal post surgical  swelling of the breast.

I was three weeks out when I fell asleep with an ice pack in my bra ( it had been provided to me as safe to use ) .  When I woke, I noticed a little sort of an ' indent' in the skin that you would not expect. It would not go away. I showed it to the BS and she said it was nothing.

Over the ,months, I kept noticing that area had a  subtle difference and the breast remained swollen. I periodically called on the DRS on my team to ask what it might be ( I did not have radiation) and every one of them said it was NOTHING.  I began to feel like  a pest. My BS said : " You've had  a surgery... you simply have to learn to live with the fact that your breast may look different"  BUT, the poont was it did NOT look different 1 week post or 2 weeks post .. or until I used that da*#@ ice pack!

Nobody would listen.

Many mos later, my wedding ring would not budge, and I knew.

It was still denied for more months (thank God for this forum which eventually led to my tx)

My BS finally admits I have LE.

She suggests I should get my rings re-sized!

I have to add that I mas measured with a perometer before my surgery but never told it was due to LE risk ( Go ahead- call me stupid) and NO LE info was ever ever ever given to me ... until I came to this forum.

lago, you're in Chicago, where Dr. Joseph Feldman specializes in LE, and he is chairman of LANA.  Did you have your surgery at a hospital or by a practice that is in any way affiliated with Dr. Feldman?  I find it very unusual that your BS not only acknowledged LE risk, he gave you a script for sleeves so you might take some precautions, presumably telling you to wear the sleeve when exercising, etc. 

I had my surgery in Chicago, at Northwestern Memorial. I specificially asked my BS about my LE risk when she proposed doing a sentinel node biopsy. Her answer was to say my risk was 1-3% according to 'the studies' but that in her practice, the incidence is practically nonexistent, so not to worry in the least. And so I did not, and did not receive any information about precautions, etc. My snb turned out to mean 5 nodes removed, and I now know that the studies are terrible and all over the place on diagnostic criteria, measurement method, and patient follow-up period, so to find one study that says LE risk with SNB is 1-3% is easy but not at all a good foundation for a meaningful risk discussion. Hindsight does nothing for me now, of course, but I do wish I'd chosen a hospital or practice group that takes LE risk more seriously. Not that I would have ever known to ask about that!

I'm wondering if you were just lucky to land in a place within Dr. Feldman's sphere of influence, so to speak.

Thanks for posting the photo again. It's one of those 'picture says a thousand words' images.

Carol

Lago, the inconsistency with which LE is approached during BS treatment and afterward is incredible. Our very different experiences in two highly respected institutions in a very large city sure do illustrate that.  

I looked once at the compendium of cancer standards of care established by the NCCN, National Comprehensive Care Network, looking for the 'L' word.  NCCN establishes treatment protocols for all manner of cancer, including for side effects, and they have become 'the' standard-setting body. But lymphedema?  Not mentioned, at least that I can find.  I spoke with their continuing education division, because they provide free online practitioner training on tons of cancer-related topics, and  nope, there's nothing in the catalog about LE.  IMHO, this is the root cause of the problem with secondary LE-- there's no agreed-upon approach within the cancer diagnosis-and-treatment community.  So whether we receive information and any help adopting proactive risk reduction precautions seems to be a function of whether we bump into a practioner who 'gets' LE.  

Way too happenstance, and the confusion that pops up in posts by LE newbies here is testimony to that, too.

Lago, thank you for posting your picture again.  As they say, a picture is worth a thousand words.

I apoligze if this is not the forum to be asking this question-

My surgery is scheduled for May16-My surgeon did mention LE to me-- but in what context I could not remember. So much information it is hard to grasp it all. In reading over your posts I am thinking that LE is associated with having lymphnodes removed, and that is why they he is doing SLN-fewer nodes and less risk of LE???

Hi sara

Welcome!

You came to the right place...I sure wish I had visited this thread prior to my surgery.

I had SNB with 2 nodes out and have breat/truncal and  then arm/ hand LE.  Having said that, there were risk factors I was never ever informed of and things you can do to less your risks.

ALSO- you should ask a medical person to meaure your arm PRIOR to surgery to have  a baseiline measurement.

Carol is spot on with limiting that  'deep stretch' too soon after surgery. (I was  actually told TO do that )  It can wait.  Do not do any repeteitive arm movements like raking,  vaccumming , etc...or lift heavy objects.  Limit your salt and do NOT wear tight watches  or rings.

Be careful of manicures and massages ( I did both!)

Eat a healthy low fat low salt diet and keep your weight in check.

Above all else, no needle pricks or BP readings AT ALL on your affected side- ever.

Check out this fabulous SUSO site (created by many of the gals right on this forum) that will tell you more then you ever wanted to know about LE:   http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm

Hopefully, armed with this knowledge you wll be prepared to reduce your risk of LE..

Good Luck to you!

mamglam

It's sad to say your story is not unique.  :>(
I  do hope you have found  a good LE therapist, which can also be a challenge, but well worth the hunt when we finally get one !

ok, I am jumping to the bottom, and answering the question.

About 10 months after surgery, which would be 5 months after rads.

I was moving, and doing OT, and it was just too much.

Presented as a bubble.