Do I Have Lymphedema?

Denise,



My arm and breast started swelling two wks after my SNB. I got a referral from my surgeon to a lymphedema therapist and I indeed did have lymphedema. I recommend you get a referral either from your surgeon or primary care to a certified therapist. I have had some friends who had similar swelling like mine and did not have LE just swelling from surgery. If it is LE, the earlier the treatment the better. In the meantime stay hydrated, keep arm elevated, and use the arm with care. Good luck!

I was just diagnosed with lymphedema about 12 weeks after surgery. It started with swelling on the top of my hand, then fingers and palm.  Being right handed, I couldn't comfortably hold a pen.  I have been working with a physical therapist for the last 4 weeks and she has been great.  Keeping your arm elevated above your heart will help alot with swelling (whether or not it's lymphedema) but yes it is important to still use your arm as is comfortable.  PT taught me a special gentle massage to manipulate the trapped fluid and I've been wearing a glove and it helped alot.  Moving to a compression sleeve next.

Lymphedema is frustrating, but with guidance it can be helped.  I wasn't very patient but realize now, even 18 weeks after surgery - I still have some surgical swelling.  Every day is better  - hope this helped LiLi1964.

LiLi, please don't feel embarrassed to ask questions!!  We've all been there, at the beginning, wondering what is what with the swelling and other LE worries.

I had SNB, which in my case meant 5 nodes went out (ask for that info if you've never been told it was literally just one node).  I sought an LE evaluation from a lymphedema clinic at about 4 months post-op (bilateral mastectomy with immediate diep reconstruction). I was worried about swelling and tender feelings under my armpit, running down the trunk a bit, and that's what I wanted evaluated.  The clinic uses a perometer (a very sensitive measuring device) and wanted to measure both my arms as standard procedure; there is no way to measure for truncal or breast LE, but they wanted to screen me for arm LE.  I was sure I did not have it in my arm, because I saw zero swelling.  Well, to my surprise the Perometer measured my SNB arm at just over 10% more volume than my other arm, and by rights it should have been smaller, because the SNB arm is my left, and I am right handed.  SO, I had swelling that I could not see with my eyes, and LE there without realizing it.  It is said that we can have up to  20-30% extra fluid in a limb before swelling is visible.  

I'm not trying to spook you--truly the risk is lower with SNB compared to axillary dissection, but the studies that say the risk is 1% to 3% are not necessarily good studies; LE studies are difficult to interpret, because they often limit the follow up period to 6 months or a year, when our risk is much longer than that; there is no standard measurement criterion for a lymphedema diagnosis--some studies use 5% volume difference from one arm to the other; some use 10%; some use a 2 cm circumferential difference at one of four points on the arm; some use a 5 cm combined differential measuring at multiple points, etc. Measurement technology is not standard, either.  So we have a bunch of studies that are apples and oranges and do not test each other --i.e. try to repeat an earlier study's conclusions--because no one has established standards for study design.  Some studies put the LE risk with SNB as high as 15-17%; others as low as 1%.  

My conclusion from the study problems is that we need to educate ourselves about LE risks and know what the symptoms are, so we can get help asap if something develops.  One thought to you is to get a referral to a qualified LE therapist, as someone else suggested, and not only get evaluated, get some baseline arm measurements now, on both arms.  The therapist will do that as part of the evaluation, but ask for help to create your own set of measurements, at body landmarks on your arms such as moles that do not move, so you can be sure that you're able to measure yourself at the same spots each time you check.  And then check ever so often, and write down your measurements. If you see a difference, call the therapist and get re-evaluated.

For accurate, evidence-based information about LE, take some time to investigate all the many amazing info pages here:  www.stepup-speakout.org. 

Last thought:  LE is annoying, makes us crazy, can be uncomfortable, and you kinda have to wear it on your sleeve, so to speak.  But it does not have to rule your life.  I'm more active than I ever was; about to hop in a kayak for an afternoon of paddling and generally do what I want, but mindful of some guidelines for not aggravating the LE.  We can answer all your questions about those considerations, but for now, I hope you'll focus on getting a proper evaluation, and your surgeon should really help you with a referral for that, to an appropriately qualified therapist.  The stepup-speakout site has a page all about finding one!

You're asking all the right questions, so with persistence you'll find what you need.  Best of luck, and keep us posted on how you are doing.

Carol 

Thank you both for the information.  It certainly makes clear nobody explained anything nearly enough (OK - not at all!) to me on the risks involved after surgery.

I visited the www.stepup-speakout.org/ site very briefly and can see it offers a wealth of information.  I will definitely be spending some time there finding out what I need to know (you ladies are so great helping me navigate this strange path I've been thrown on out of the blue - in fact, it's done me a wealth of good being able to connect with others who have traveled the path before me!!!).  I hope and pray I can be as helpful in the future after I've traveled a little further on this path so as to help those who follow behind me (and unfortunately there will be too many that will).

After reading what's there, I'll contact my doctor about a referral.  It does kind of scare me that lymphedema can happen at any time in my life from here on out and that the symptoms might not be discernible by sight alone.  But heck, I've been scared plenty since my diagnosis and I'm getting a little used to it - so at least it doesn't cause me any anxiety.  Just makes me ask questions and I'm fortunate to have you all to turn to for help in that regard.

Thanks again!  I will certainly follow thru and keep you posted.

yeah, my LE is in my trunk, it is actually seen on a mamo as a layer on the boobie.

and my arm, is thinner on that side, my LE therapist asked if I was favoring my left side?  duh, thought I was supposed to not carry my handbag on that side?

recently my cancer trained PT has convinced me to start to carry my coffee cup in the left hand...just from the car into the gym as I was not!

so I have a wierd shaped boobie and do get rib pain if I wear the wrong bras.....but dealing

no one tells us this junk...cept for Binney and co!

WOW!!! when I came in here last night there were no answers to this thread and I didn't have time to so I came back just now and lots of great posts here. Thanks for your post Carol. I have been thinking about a recent measurement difference of 5cm and your explanation has helped me get a wider picture of that.



Ariom, I have very minimal (almost zero) swelling in the hand and that is only fairly recent. My LE started in my upper arm and just this year has become quite a problem below the elbow for no apparent reason.



Lili never ever ever feel embarrassed to ask questions. The only dumb one is the one you don't ask. Hope that puts you at ease. Gentle and warm hugs. Regarding drains, I remember being told that the longer drains stay in the more chance of infection and the general consensus was that it was about 3 weeks max that they would leave drains in. Maybe things have changed now but one thing we all either know or come to know, there is a serious lack of consistency as to what constitutes dx, treatments,etc, but maybe that's because we're all so different. Sometimes we wonder...the only consistency is the inconsistency of it all and LE sure falls into that category.



proudtospin I hear you on the wrong bras... just last night I had to ditch em because they decided they werent going to be good girls like they usually are. The trouble spot was where I had a seroma on my prophy side (11mths after 1st mx) and the fluid has never really dissipated. BS told me it was just fat .... yeah right, great deduction since my BC side doesn't have this "flab".



jarris thats an unusual situation for sure. Good on you for getting onto it. At least you were informed that it's possible, unlike some of us and it is a good thing to be informed early on about LE. Lets hope your appt goes well for you.

Ladies, 

You’re all kind of making me worry and perhaps without need to.  I had NO clue that you could get lymphedema anywhere except the arm.  The web site that carol57 referred to has a ton of info I had never seen before and am shocked by what I see.  OK – worry is not the right word, I think, perhaps concerned is better.  And no doctor, nurse, or any other medical professional mentioned lymphedema to me at any time on this journey.  The only way I knew anything about it was from reading Dr Love’s Breast book and from what I was seeing when researching breast reconstruction sites. 

Now tell me something, since you all have much more knowledge than I on this subject, how is one to know if they have truncal lymphedema?  I mean, after MX and reconstruction, there is obviously swelling in the area and the incision itself is raised (so how is one to stay it is swollen?).  What would be the indication that lymphedema is developing in that area and how can you know? 

In order to find my answer quicker (than researching online) can someone give me their opinion on this…..about 10 days post surgery we had a very hot day.  I put on a pair of slip-on capris and looked down at my feet and freaked.  My feet, ankles and calves were swollen and I’ve never experienced that before – not even with my pregnancies.  I called urgent-care (it was a Saturday) and had to go thru the whole spiel of “I have a bilateral mastectomy on 8/7, blah, blah, blah” and then went on to explain the swelling I was seeing.  The only thing going thru my mind was lymphedema.  Well, the nurse was obviously a little overwhelmed that she had to deal with a patient who had been thru a major surgery and out of the blue developed this issue so she said to me “please hold on the line, I need to contact a physician to get advise before telling you anything”.  I held for about 10 minutes and she got back on the line and said they were concerned about congestive heart failure (ok- now I was even more freaked out as that never crossed my mind and sounded much more worrisome than what I had been thinking).  Anyway, the short of it was I decided I didn’t want to run down and sit in a clinic waiting to be seen (she wasn’t even sure if they should be the ones to see me or if they should get my surgeons office on the line and have them advise me where I should go or if I should just go to ER) since my BP was fine, no fever, swelling was not going above the knees, no chest pain or shortness of breath.  As suggested, I elevated my feet to see if this might bring the swelling down and by next morning, sure enough, swelling gone. 

I know that was a long story – sorry – but could that have been a sign of lymphedema?  I know any major surgery takes a great toll on the body and every body acts different but now that I see LE can happen in many areas of the body I didn’t know, I wonder…… 

I’m interested in your thoughts.  Both on the question on how you know there might be something of concern in the breast (ok – lack of breast) area and if that strange swelling I had for a short period of time might be a sign of LE. 

I’m trying to “get all my ducks in a row” because my doctor is the type that rolls her eyes when I say “you know, I was online researching XXX and found XXX” – she also came to visit me in the hospital and again told me she didn’t think I should be going online to research because it only causes me to worry (not worry – it causes me to ask questions) and I know she means well.  I also know she is no different than every other doctor I’ve seen for any medical issue – they all seem to HATE it when patients get themselves informed – (I’ll never understand that!).  Do you all know what I mean?  I want to be able to go in, tell her I’ve read up on LE because of the swelling issue I had 10 days post op and then lay out my concerns (without going into detail just how much I’ve actually read online and found out at this forum – why rock the boat, right?).  I guess I’m just trying to find out the best way to approach the issue with her without getting poo-poo’d and being told not to worry.  And from what I’ve read from all you very informative gals is that you’re dealing with this and perhaps your input will help me formulate a way to bring up the issue with my doctor. 

Thanks again for all the information and assistance.  You all are so kind and caring!!!

carol57 - you crack me up with your 20 year old boob description!

musical - i know the tube issue and 3 weeks thing is out there.  my PS thinks that these tubes will HAVE to come out next week and they'll start the expansion process at that time to try to take up some of that "dead" space in order to minimize any fluid build-up.  Seems there is no concrete medical studies out there that say the tubes MUST be removed at 3 weeks - there are those of us unfortunate ladies who end up on the outside of the norm and have them a little longer.  I'm still on antibiotics while the tubes are in to also minimize the risk of infection.  I want them out, but not if I end up w/infection because they come out too early and then end up gettin the TE's removed.  If that happens, then my future is w/prosthesis - I won't even attempt reconstruction again. 

Binney, 

You are such a wealth of info!!!!  Yes, the nurse was concerned about a possible blood clot when I had called regarding swelling but because I didn’t have any other symptoms, I felt comfortable trying the elevation first.  I assured her I would watch very closely for any of the signs she discussed with me and would contact them immediately if any arose – none did.  And yes again, I was on 3 new medications so that may have been the issue. 

Glad you cleared that up for me on where LE affects the body.  

Thanks for all your help!  Are you a nurse?  You amaze me with your wisdom!