Time Period for developing lymphedema?

carol57

Chris, I had to argue and raise a stink with the nurses to get them to understand I did not want my SNB arm to be used for anything. And that was 2 days after my surgery, when one of the residents told me that my 'sentinel' node biopsy required removal of five nodes. That's when I became excited about LE precautions, and honestly at the time, I knew virtually nothing about LE.  All I knew is that it can happen after node removal, and that I had just said goodbye to five of them.

The nurses still maintained that it was hospital protocol to not do arm precautions on SNB, five nodes or not.  I don't think I was a very friendly patient that day! One nurse finally saw it my way and took the initiative to post precautions for me.  I asked the chief resident later that day if precautions were truly not needed, and she more or less  finessed the answer; seeing how distraught I was, she may or may not have have wanted to give me a straight answer on hospital policy or on the research, so I think she just dodged the question by telling me that she had put an arm-precaution order on my chart and was sorry the nurses had not followed instructions. Finger pointing is a heckuva way to run a hospital.

I'll never know if those first two days made a difference, but to this day it steams me that there was any question whatsoever about avoiding a nodes-removed arm when another arm had untouched nodes.  We're already at risk just by losing the nodes in the removed breasts (Kira says there are nodes in our 'tails of spence'). I have zero patience for the purposeful taking of risks that are not necessary, and BP and IV on my SNB arm were not necessary.

I did the Cleveland Clinic estimator too (I love that place; they performed a miracle fix on my son's heart; he was number 3 to get it after FDA approvals, saving him from open-heart surgery and transforming a months-long recovery to a 2-week keep-quiet period!). My theoretical LE risk was about 17% I think; don't recall exactly.  Much more than my BS quoted (1-3% with 'only' SNB).

I don't mean to sound bitter, but I am just angry enough to be spending tons of time working on a variety of LE patient-education initiatives. I'm glad you're poking around for information, because I'm afraid that way too many women who get the BC diagnosis have no clue they're at risk and don't know that there are some, pitifully few but nonetheless important, precautions they can take right now.

'Nuff of the soapbox speech.  I hope you're not shy, so you'll be sure to advocate for your LE protections every step of the way.

Carol 

carol57

One more thought is that my arm-protection gymnastics are nothing compared to the women who had bilateral nodes removed and go to extraordinary means to secure cooperation in avoiding both arms.  We have some amazing women in this forum. If we could channel that energy and determination into politics, all manner of national problems would be solved.  Ooops, better not go there..but you know what I mean.

FLwarrior

At my hospital during pre-op procedures they put a 4 inch long red knitted band/sock looking thing with "NO IV -  NO BP" on my arm that that was on the surgery side.  I had that on the whole time I was in the hospital.  They also put the BP cuff on my leg because it made the IV in my (unaffected side) hand really HURT when the cuff on that arm pumped up.

I had 4 nodes removed / UMX.  I was sent home with directions for stretching exercises.  Even had a home-health nurse come every day the first week and she had me do the exercises while she was there.  I went to an OT and got massages and did excercises for a month.  It helped and I got all my ROM back.

I have not slept on that side at all since surgery.  I used to be a side sleeper...sigh...

I am lucky so far that I have not developed LE.  I do worry about it happening.

2 things that I question... First, I wear scrubs to work and when I get home and take off my scrub top while pulling the top over my head I always get a pain in that soft triangle area at the base of my neck just under my collar bone on the surgery side.  I never had this before surgery.  Has anyone experienced anything like this?  I know that there are some lymph nodes in that area, but the ones I had removed were axillary.

Secondly, At the end of the day when I take my bra off I have a pretty evident indention from the bra elastic it is more noticeable and deeper on the UMX side.  I had a professional fitting at a MX boutique and they insisted that it needed to fit snug. It makes me wonder if I have a mild case of trunkal LE... What are your experiences in this area? Thanks.

Anonymous

Once again, I have to say I was not told.  I have been having blood draws in the same side as nodes removed.  At least the bp was done on opposite.  Worse, I had a 3 1/2 hours IV done in same side last week.  Geeze, the surgeon should have told me all this. 

The thread is a wealth of info.  Thank you all for sharing.

I think I could have some LE, the arm feel so heavy, always has though, and I was swollen like a small football under there after surgery because a drain was not placed with 11 nodes removed, butthe incision opened on its own and drained for a few WEEKS! infection and all, and I did recover.  What I worry about is the fullness in arm and around side rib area, feels heavy but was told there would be nerve damage and to expect it to feel funny and for pain to be in back of arm for a long while.

beth1965

Kira-i just wanted to say thanks for that info you posted

Binney4

Essa, any member of your medical team can write you a referral for an evaluation by a well-qualified lymphedema therapist -- even your PCP. The therapists are the medical professionals who are trained to evaluate and treat lymphedema -- everyone else is only guessing. Here's how to find one near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

When lymphedema is spotted and treated in its early stages it is much easier to treat and to manage long-term, and much less likely to result in serious infection.  Be sure any therapist you see is fully trained and has experience with truncal lymphedema.

Keep us posted! Hugs,
Binney

Mimi8

I've been reading all your posts. Just had a mastectomy of my left side and a PET scan that showed no more cancer. Worried about Lymphedema bc I would like to resume playing tennis once the rest of my treatment is finished. Is that even possible? Any tennis players out there with LE?

Mimi8

kawee

Well, here I am back again.  My last post was January.  Went to BS, she wrote me a script for a month of lymphedema therepy.  I had cording from underarm to elbow.  They broke that up and got rid of the swelling except for next to my breast.  The PT told me she thought it wasn't lymphedema but edema from the cording.  Now, a month later swelling is bigger next to breast and I have it under my arm and in my elbow fold. When I go back to the BS on Tuesday they want me to get a sleeve script from her.  Sounds like I need more than a sleeve.  I'm confused on what to do next.  Guess I'll have to see what the BS says.  Is there some other kind of Dr. I go to for this?  The PT I go to are supposed to be trained in lymphedema.      

Binney4

Kawee, maybe the PT was just guessing on that and hoping it might resolve. Have you called her to tell her it didn't to see what she suggests? You might ask her how much experience she's had with truncal LE, and if you're not happy with that, request a referral to another therapist. Any doctor on your team can give you a referral, even your PCP. Here's a link for finding well-trained LE therapists near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

And here's one about truncal LE. At the bottom of the page are links to several kinds of options for garments that might help:
http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

Do get help soon, and let us know how it goes.
Gentle hugs,
Binney

carol57

Mimi, I see no tennis players surfaced to help with your question.  I am too uncoordinated to ever imagine playing tennis, but I will say that there are amazing women in the LE forum who have put LE in its proper place and refused to concede their favorite sports to the #@%@! condition.

You need upper body strength for your sport, and as you work to restore any strength you might have lost during your treatment, just keep in mind that slowly progressive strength training is our LE maxim when we want to get arms and trunk ready for lifting (and swatting in your case!).  Look in the 'just call me paranoid' thread for a post about the PAL Protocol to get you thinking about your back-to-tennis prep strategy.

And I do hope that there are some tennis players in our forum who will share their experience.

Carol

Laurie09

I'm about 2 1/2 yrs post mastectomy and axillary dissection followed by radiation to my axillary and superclavicular region.  I had lymphatic cording for a while after the procedures that got better with time and PT. 

Just hte past couple weeks I have noticed I have some mild LE in my hand.  

Thankfully it's mild, and I'm seeing a LE PT so hopefully I can keep it from getting worse. 

kira66715

Laurie, good for you to get into therapy. I also have hand issues, and gloves are an "art form", but have luckily found the ones that work for me.

Please let us know how you're doing--it can be a steep learning curve and a royal pain, and we're here. There's also an emotional component, and we've all been there.

Carol: I am a former tennis player, who played up until my surgery, about 3 times a week. I'm left handed and got my LE early on in my left hand--I had pretty bad tennis elbow at the time of my surgery, and that may have added to my risks. I do remember my BS who has no mental "filter" noting my hand swelling, but telling me my arms were "buff" (?!). I live next door to my former tennis partner, and she always asks when I can rejoin the game, and I tell her I want to hit a few balls first, but I remember playing with the better players in another league--the younger women who played in college, or even my daughters, and returning their serves, I'd feel it in my whole arm. Frankly, I'm afraid. You get into the game, and it's fun to hit hard. I think JoAnn Rovig told me about a woman who went back to tennis and she would swell but it was worth it for her. 

I'm kind of a sports nerd, but both my daughters played high school tennis, and I got tired of being the ball girl, so I started to play, and really enjoyed it, and was always taking lessons from their coach who was/is a riot. We'd laugh through the whole lesson. I do miss it.

Kira

Bogie

Kawee, I was just told too by my BS I have breast lymphadema yesterday. I had MX with reconstruction done 4 months ago and the swelling is worse on the side and under my arm where nodes were removed.



I have to see a physical therapist. Please let me know how you are progressing and what your PT did.



Just finished surgery for capsular contracture now this is on my other side. Does this ever end!

meny

Hello:

I'm a little confused about the LE prevention instructions posted here.  Not sure I understand.  First are the elevating instructions without bending the elbow?  Keeping the arm straight out?  Also 

Carol - you say "do not allow any stretching or range of motion exercises on that side that elevate your arm above the shoulder, for two weeks after surgery. "

 But then Kira says  "Lie down and raise your affected arm above the level of your heart for 45 minutes. Do this 2 or 3 times a day. Put your arm on pillows so that your hand is higher than your wrist and your elbow is a little higher than your shoulder. This will help decrease the swelling that may happen after surgery"

 What am I not picturing correctly?  If your elbow is higher than your shoulder then your whole arm is higher isn't it?   I'm missing something here.  Are there pictures illustrating this anywhere? 

Also, if there's no time to go to a Lymphedema specialist for a baseline measurement how can one take it onself? 

thanks!  having surgery Tues.  SNB

carol57

Meny, Picture lying down on a bed--you can raise your arm above the level of your heart--straight up in the air--without raising it above your shoulder.  A better way to picture this may be to do it standing up.  Put your arm stratight out --literally straight--but not pointed up, so it's not above your shoulder.  I think Kira is saying that you can lie on your back, with arm elevated on a pillow next to you, so that it's higher than your heart, but still not above your shoulder. She says 'elbow a little higher than your shoulder,' but that's a rotation of the elbow, which is different than an arm reaching above your head for the sky.

Kira checks the boards pretty often, so I am confident she'll see your post soon and shed additional  light.

On the self-baseline measure, in a pinch, I imagine you could measure (better yet: have someone else measure you) using some reference points similar to what you see in the drawing at this website:  http://www.recoveryelements.com/juzoarmsleevesizechart.aspx . Take care not to tighten the tape measure to where it indents your arm, and one hint others have suggested is to find some anatomical reference marks, such as freckles or moles, so you know for sure you are always measuring at the same points along your arm.

If Kira or Binney or someone else has a better resource for you, I am confident someone will post it for you.

Stay positive--it's amazing and wonderful that you're focused on your LE precautions--best wishes for surgery and the recovery to follow!

Carol

meny

THanks Carol:

What amazes me is all of the medical professionals dismiss SNB as an LE risk.  Yet, I'm reading right here that there certainly is a risk.  I understand that most people who post are those who ARE having issues and there are most certainly tons of people who have no issues at all - yet as evidenced here there is a real risk and if  there are measures to help prevent LE we should be informed no matter how slight the risk is so we can be proactive. 

 And thanks for the explanation.  I WAS picturing it incorrectly.  I was picturing my arm laying on the bed along the side, not in front up in the air.

carol57

Meny, I think Kira's suggestion for elevating the arm is intended to be done from the bed, wih the arm at the side on pillows.  But when she says 'above shoulder level' there, she means raising the wrist and elbow, and I  think the elbow should be bent.  The caution about not raising the arm above shoulder level is to prevent us from stretching the tissue of the armpit--the business of 'reaching for recovery' to stretch the axilla area, to prevent 'frozen shoulder.'  It's common to tell BC patients to do 'wall walking' --where you stand facing a wall and literally walk your hands upward, doing a little more stretching upward with each try, several times a day.  This exercise really does help alleviate the tightness that often follows breast surgery, and 'frozen shoulder' is a real problem we want to avoid by stretching early.  The problem here is the word 'early' --it is exactly this kind of stretch, or any arms-up-high movement, that can interfere with the critical 7-10 day (and the LE experts are saying assume 14, to be cautious) window in which the damaged lymphatics are trying to regenerate.  One study demonstrated that delaying the shoulder-movement exercises by 10 days reduced LE incidence dramatically without impairing movement and function.

As to the risk with SNB, there's unfortunately no consensus on that, but study results show ranges from aboug 3% to as high as 17% of women getting SNB will develop LE.  The reason the range is so huge is that studies differ in two key areas:  how they define the diagnostic criteria for LE, and how long they follow up the patients during the study period.  Almost all studies of LE incidence focus on arm LE, which can be measured (although fluid volume can increase 20%-30% in an arm before the LE is measurable, so already that means under-reporting of LE!).  But breast and truncal LE defy measurement (as Binney says, we do have to breathe!), so it's not being watched for in most of the studies.  Yet there is some thought that for women with breast-conserving surgery, SNB has actually increased the incidence of breast LE, possibly because by definition, the node(s) being taken are the most direct path from breast to lymphatic filtering and processing of the lymph fluid. 

Oh--and SNB does not necessarily mean just one node (it was 5 in my case)--and it's only common sense that the more nodes removed, the higher the LE risk.  Having said that, plenty of women here got LE after losing 'just' one node.  But you are certainly right that many fortunate women who have no issues after bc treatment move on and do not seek the online support community. So yes, we have a disproportionate number of problems being reported here.

The women who created the Step Up-Speak Out website have a printable page that is meant to be given to our healthcare providers, so if you have not looked at that site yet, do spend some time there, and download the pdf file so you have something to discuss with your doctors if need be:  http://www.stepup-speakout.org/what_we_need_healthcare_providers_to_know_about_lymphedema.htm

You are getting mighty close to your surgery. I hope you're feeling strong and confident going into that--wish you the very best as you use this weekend to prepare. 

Carol

meny

Prepare?  That's funny!  I've been too busy to prepare.  I have work to get out and other things to take care of.  I've spent so much time over the last few months researching so as to make the best decision for me that I've been in crerebral mode - not emotional mode.  I do have a fear that when I get out of surgery and realize what's been done, I'll freak out.   But at least I'm aware of that possibility.  And in any case I then grab a flight just a few days later to start my reconstruction - (2 surgeries in less than a week!)  so there won't be too much time to dwell.

Hmm, speaking of flying.  Any suggestions about what I should do to prevent LE?  I know flying is a risk .  My flights are 3 hours each.   I did ask the nurse educator when we spoke yesterday because someone here suggested I get a light compression sleeve, but she said no - not for a 3 hour flight.    Anyone want to chime in?  I've so learned the doctors don't have all the answers.   I had no idea about the 7-14 day window.  Maybe that's what my BS meant when she said I won't be doing PT for  a few weeks.  Oops ...  if so, then I owe an apology for the email I sent ....  She's usually very good about explaining the reasons for things because she knows I like the details - I have to understand the process.  She didn't elaborate on the no PT for weeks.  And oddly enough, I didn't ask. 

kawee

Bogie,

The PT broke up cording I had and did lymph drainage massage.  It worked pretty well.  But after I quit going (one month later) it came back.  Now they have fitted me for a sleeve and I'm going to get a bra that puts support on the side of my breast.  One neat thing (if there is one) is that the sleeves comes in colors, pastels even.  I still have some swelling under my arm but the only place that is seems to progress is in my arm, especially around my elbow.  I'm sure the lymphatic message will do wonders.

 

kawee

HAS ANYONE DEVELOPED CELLULITIS?

I noticed on the area where my arm has fluid there is a small flesh colored blister.  It's very small but I can tell it has fluid.  It is NOT red, feverish or anything.  Just this small little blister like thing.  Anything to worry about?

carol57

Meny, Compression while flying is such a judgment call!  The NLN says if you have an LE diagnosis, wear a sleeve, otherwise, use your judgment (helpful, huh?). 

Before my formal LE diagnosis, on the advice of wonderful women here, I wore an Under Armour compression shirt, one size too small, inside out.  I ultimately found I have truncal LE in addition to in my upper arm, so the shirt was a good idea for me, and now I travel in a compression cami plus my genuine LE sleeve and gauntlet.  A compression shirt might work well for you...on your way TO your recon.  On the way back, not having a clue about your recon method, compression from a UA shirt might or might not be feasible. 

If you're in compression after surgery, the shirt over the surgical compression might be difficult or not advisable--no clue on that one.  Wish I had a better answer for you.  I do know that when I fly (which I do very often for work), I almost never have issues on short flights--I think 3 hours is right on the border of 'short' for me.  When I cross country, even in my compression I feel achey afterward, which for me is a strong sign I'd better to manual lymph drainage immediately on arrival to my hotel.  But then--I definitely have LE, and you do not. And hopefully never will.

In flight, you can do a few things to ward off LE.  You can periodically make a fist and put your arm up in the air, pumping your fist 20 times, slowly.  You can drink tons of water and then get up and walk to the icky bathroom--water and movement are very beneficial.  You can do deep belly breaths:  breathe deeply in a way that expands your belly, making your belly button rise so you look pregnant. Then, purse your lips to form some resistance, and slowly exhale, ending each breath by pushing with an ab contraction. That way, when you inhale again, you really move the diaphragm inside, and that has the effect of pushing lymph out of deeply located lymph nodes, which in turn encourages lymph to vacate from the area under your arm.  Five breaths like this in a row, slowly, allowing a slow count of two in between breaths.  Do it once per hour, maybe.

And if you feel silly doing all of the above, well..welcome to the club!   Recently I was in a departure gate area and saw another woman in a sleeve. We just kinda raised eyebrows in each others' directions.  I was farther back in the airplane and could see she was fist pumping.  Maybe she's reading this post...hello fellow aircraft-belly-breather-fist-pumper!

Carol

Bogie

Kawee, thanks for the info. I'm wondering since I had this same swelling (edema)around breast area armpit and chest on lymph removal side why didn't my surgeons give me a compression cami. I did have a tight wrap tube top thing but was swelling over the top and he told me to take it off and I never put its on again. I also saw my PS weekly and he knew I only wore a tshirt.



Is my bloated stomache below the ribs swell from lymphatic fluid, doc won't give me an answer I don't think they know! I'm 4 months out from my bilateral masectomy.

Ginger48

I would keep an eye on it. My PT says to call the dr if it gets red, hot or I run a fever.

kawee

Bogie,

They really didn't want to do much about the fluid on the side of my breast either.  PT said sometimes that is just where the fluid decides to settle.  Also my breast is enlarged a little.  Don't say much about that either.  Mainly everyone is concerned about the arm,.  Have you seen those compression bras?  Oh, my goodness, don't think I could wear that thing.  I've been to two different PT.  The one I'm seeing now is at a lymphedema clinic.  

kawee

Ginger,

 That's what I thought I'd do.  I got it after trying on the compression sleeve they were fitting me for.  It was so hard to get on and I just kept rubbing in with that glove trying to get it on.  I think maybe I just rubbed a blister.  But, who knows.  I haven't popped it.  Thought maybe that wouldn't be good.

meny

Thanks again Carol.  Oh and I forwarded that speak-out link to my Dr.

carol57

Meny, let us know if the dr. gives that information a warm reception!

kawee

Just got fitted with my first compression sleeve today.  It makes my shoulder and down the back of my arm ache.  Anyone experienced this?  This is even less compressive than the one I should wear.  Just hurts my arm.  Do you get used to this?

Bogie

Question....did your surgeons biopsy your lymphnodes first or just straight to removal? Mine just went in and took out 5 lymphnodes during my MX. I found out later after talking to someone else that her surgeon just biopsies. Now I'm very angry because I have Lymphadema.

kawee

Removed one node (the sentinel node) and biopsied that.  I just had a partial mastectomy.  Like I said, it's been three years ago and with only one node removed I NEVER thought I'd get it.  I guess even the radiation can be the culprit.