Lymphedema threat: are we ever out of the woods?
Dear all,
It's been nearly 10 years since my lumpectomy. I had 11 nodes removed total. Since then I've been religious about using my left arm (lumpectomy done on right) for everything-blood draws, BP cuffs, vaccines (including Covid), etc.
I should add I never had any sign of lymphedema, ever. I'm in great physical shape (no circulatory probs) and at the low end of lean for my height. I remember that sometimes weight can put some of us at higher risk... (?)
Anyway-my question is-are we ever able to use our lumpectomy side again for the above procedures? Is it an off-limits thing for the rest of our lives? I wondered since I got the Covid vaccine from my car last week, and I was sitting in the passenger side, forcing me to twist in my seat. It was fine-but it made me think about my question and wondered if anyone knew the answer.
Claire in AZ
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I do not have lymphedema either though continue dealing with persistent stubborn cording so believe I am and will continue being at greater risk. Still get swollen nodes, esp. in my elbow and esp. with physical activity too - can't tell which activities make this worse for the most part tho - some are obvious. Others who actually have lymphedema will come along and comment I'm sure. I just saw your solo post so thought I'd jump in. I've seen many post on this site about the risk is always there, some even developing lymphedema years later when something triggers it. My L.T. said lean folks are at greater risk for cording. I'm average weight though am quite lean which is why she made that comment. I have scleroderma so we believe that is why the cording is so persistent. I no longer see my L.T. - her outpatient place closed for good and the other place she works is not allowing any outpatient due to COVID. She thinks I'll be ok.....??? Cording better though still an obvious presence - can't see it though it's all still there, including in my diaphragm....I'm kind of use to it now....
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im certainly no expert but I'm thinking we should always keep our guard up. I had a lymphadema flare 10 years after treatment.via had been pretty careful - no jabs, blood pressure, watching for cuts, but had not paid attention to sunburn, mosquito bites & think that's what did me in. I'm also in good physical shape - 5 4", 115, so you certainly don't need to be overweight to have a problem. Keep up your vigilance & know to watch for the signs of a flare. I let mine drag on for a bit because I didn't recognize it at first. My best to all:)
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Claire - I got my Covid vaccine my thigh. No problems. I agree with Amanda - we are never "out of the woods". I knew a lady who developed LE at 25 years after just minor risk factors. I will continue to insist n ankle blood draws and mimimum procedures on my arms.
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I had 11 nodes removed also & have never had a problem with lymphedema either (knocking on wood). As I understand it, although the risk goes down with time, we are never completely out of the woods. It just makes sense to continue with the precautions. They at be inconvenient at times, but not as inconvenient as developing lymphedema!
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I have a question. I am having carpal tunnel surgery on both hands in 2 weeks. Does this mean that even though I have never had a problem with lymphedema I could develop it due to the trauma of surgery on that hand? I have already told the surgery center that my right arm is not to be used for anything.
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Yes, it will increase your risk, but it's not a given...you might well have no problem. Just be aware of the early signs & keep a good watch. If you do think it's Flaring up, see a lymphadema therapist as soon as you can.
Good luck with your surgeries!
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Boy Ruth - how lucky. cm2020, good luck with your carpal tunnel surgery.
Below is a link that has lots of good information about LE for those of you who haven't seen it.
https://www.stepup-speakout.org/
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Thanks to all of you! I guess it's similar to the fact that we can be NED, but really that's about it. There will never be a time where we hear "you have no more risk for breast cancer". Which, in reflection, is a statement that can be applied to anyone-those of us who had it or those of us who never have.
Claire
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Thank you amanda and MinusTwo. I appreciate it.
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LivinLife - You get swelling in your elbow? Whereabouts - inner?
I just had that happen - just a tiny bit - I just noticed it earlier this week - though my arm has been feeling odd for a few weeks. My lymph nodes were feeling a bit swelly too. I had lymph drainage today which softened them right up. Other than my tailspin panic about possible recurrence - I do get the impression it is more like to be some mild lymphadema.
Yours comes and goes?
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Palbuddy my swelling definitely comes and goes. I cannot find a rhyme or reason to it. Sometimes I feel like I can point to physical activity, sometimes not. My swelling in my elbow occurs more on the back side of it, but thats just me.
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Yes, PalBuddy - inner left elbow. That is the side I had the node removed too. It feels an odd squishy and tender when it's swollen. It happens 2-3 times each week. The L.T. saw it a couple of times and yet still told me I don't have lymphedema???? I also just realized I get a swollen area in my right chest-lower rib area... I think it's been there for months (on and off too) though I thought it was just tissue settling yet. It may just be fluid - not lymph-wise...?. My L.T. was not connected to the medical center I go to - she was outpatient at a local rehab center.
I was nosing through my local med center portal looking for some other test results yesterday and happened to see my L.T.'s name with the diagnosis Lymphedema, NOS (not otherwise specified) /???? I think this may have been just for billing purposes b/c it looked like insurance was initially denying for weeks and then all of a sudden everything went through and was paid for. A few weeks ago I decided to get the progress notes from the LT appointments I had b/c I want to pass these onto my rheumatologist. I just got the blank release of info today to fill out.... After seeing the NOS diagnosis I'm really curious to see the notes at some point... I still think it was more of a billing diagnosis though I've obviously got something going on here....
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LivinLife - Check to see what training & certification the LT has. I had a wonderful PT for a frozen shoulder, but she was not LE trained and let me know that. If your doc hasn't diagnosed (which we know many docs don't/can't), maybe she's hesitant to commit? Could well be breast/truncal LE which is really hard to diagnose.
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Thanks MinusTwo! I got her off the Lymphedema website that you list often. She is trained as an O.T. as well and I'm assuming that is the bulk of work she does. I also got the sense her L.T. work with breast cancer is NOT infrequent - just now sure how often that means. Both of the settings she works in - now only one since the one I saw her at closed for good - were rehab centers. She works prn outpatient so may not do that much lymphedema work anymore. I hadn't really thought about any of this until you mentioned it so thanks! I believe this may be quite mild or an NOS lymphedema for real. I also realize from you all it's important to get and stay on top of this or..... I actually e-mailed a place today in town that does lymphedema work though does not have my insurance listed. I will call them on Monday to see if that changed and they just didn't update their website...
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P.S. My PCP is worthless on any quality of life issues. I think he would put lymphedema in the quality of life issue that isn't a big deal... grrrrrr. I think he really has my back with "more serious medical issues" and I do like him - he's a nice guy.... I'd change though this seems to be the case with so many of the docs I see any more... I'd probably just get another one like this or worse. So I'm just going to see these folks less. I have just been sooooo frustrated lately with these kinds of things and when I mention these kinds of things they just look at me and then move onto something else.
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Even my BS said - oh no problems. When she finally recommended a popular place to go - both my RO at MD Anderson said, "oh not there".
Interesting how many of us now drive our own bus - instead of relying on existing docs. I too like my new PCP (although I've only seen her twice), and have somehow convinced her to order all the blood work that all the other docs want - MO, Cardiologist & etc. I hope that lasts. Fortunately I have traditional medicare so I can go anywhere I want.
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Hi LivinLife,
I just heard about cording and I'm convinced I have some form of it. I've been complaining about this pulling feeling since day 1. It went away for a while and now it's back. What does it feel like for you if you don't mind sharing?
Thanks in advance! 😊
cwins
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HI cwins! When I first noticed it I could actually see the rope like cords running from my armpit area down my arms to my elbow - both sides though I only had one sentinel node removed on my left side. It literally felt like a cord or rope pulling and keeping me from fully extending my arms- though after some of the stretches PT showed me to do daily at home I did have my full range of motion - it was tight and I could still feel the pulling tho - eventually I could not see the cords except for a tiny bit in the upper inner arm - I can still see that a little on the rare occasion I look. the other gross kind of feeling was in my elbow area - inner elbow where it was more than a pulling - it was like the cord ended there and the cord was attached to more and pulling on more in that elbow area - hard to describe. I still get swollen nodes in that inner elbow so the cord was/is (still happens some) pulling on a lump of swollen nodes?
Also I still have a thick area of cord from my sternum going into my diaphragm area - it seems to end but I'm assuming it's down under somewhere? The lymphedema therapist wasn't able to do anything with that - as she worked on it it would seem to become less thick though not by much really. She thought that area was from my drains (from the armpit area, across my chest and to the sternum area) which makes sense. I did have cording pulling from my armpits down into my sides though I think that is gone now.... I decided the other day I am somewhat of a marionette LOL LOL you'd never know it to look at me - I have full range of motion and truly I do not get much pulling at all when reaching now. I think the tightness in my pecs is just the typical tightness others talk about after surgery - I don't think that is cording related....
I hope that helps - it's difficult to put into words. Let me know if you have any other questions.... Best!
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Hi LivinLife!
Thank you for sharing! Yes it is helpful. I feel like I have some of that although I can't "see" anything like that. I feel something from. the top of my breast into my arm pit....which is weirdly fatty that won't go away. I can't wait to start seeing my LE therapist again! She is familiar with cording and now I'm glad I heard about it. Its good to know that it can move onto the chest area where I do believe this starts.
Again-- you have been very helpful!
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Glad the info was helpful! Please check back in after meeting with your LE whenever you can start back. Keep in mind PT (or YouTube to be honest) can provide some helpful cording-related stretches. The two they had me do both involved doorways to stretch out the pecs and underarms-biceps. You could look for these b/c they won't hurt you. The first one just had me placing forearms flat on the door frame with my body in the middle of the door way and one foot stretched out in front (foot on the floor) - just provides a nice pec/armpit stretch that really reduced the cords going down my arms. I could no longer see them at all and thought they were gone - my Lymphedema therapist could feel them and so could I when she was "on them." The other stretch is too hard to describe with words only.... you will see it as a hand stretched out behind one on the wall about hip level... I actually put my hand high on a door frame for a better stretch into my underarm... if you see this on YouTube the description may help you recognize it. Best!
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Great question. The answer is no. Lymphedema can be triggered by any trauma to that arm that lost lymph glands. There will always be scar tissue and missing lymph glands. So it is important not to injure or burn or impact that limb in any way. That is not always possible, but do avoid injections and blood draws and blood pressure tests on that vulnerable arm. I had 14 axcillary nodes removed in late 2008. I developed lymphedema back then, but went to a certified lymphedema therapist, got that extra volume down and wore the compression sleeve so it stayed that way. In late 2019, I tripped over my 100 pound dog in the night and fell, hard. My shoulder was crushed on the same side as the BC and lost lymph glands. After surgery to repair that, the lymphedema reappeared in force, so I did more lymphedema therapy and reduced it to normal size once again. I've had to hold off on that during the pandemic, and it's still under control with the sleeve. But it can happen again if I injure that arm again. The best thing to do is to completely avoid any insult to that arm. And to know who to call if one happens. There are certified lymphedema therapists who can fix the problem if you can get to them early enough. If your arm feels heavy or full or your shirt sleeve isn't fitting properly, get on the horn and find help.
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I think NOS is a way to bill that does not put the patient on trial.
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Thank you for the exercise tips! Another friend told me about a similar door stretching, she said it was to get her range of motion back. I wasn't told anything initially. But all these questions will be given to the LE Therapist once we meet next week.
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Hi, I wanted to post a question about this too, but cannot seem to figure out how! Seems like you are all employing good prevention behavior. I am having a sential node biopsy before mastectomy surgery to make sure no cancer in my lymph nodes. I am wondering if/ when I should use a compression sleeve after that and the mastectomy to help prevent lymphodema? I have read some peer reviewed studies that show it helps. I know to wear one if I fly or travel regarding altitude and pressure, but I don't know if I should wear one more often than that. If so, when do I start wearing it after the surgery? I am wondering if I should wear one regularly as a prevetitive measure. Dr.'s seem to poo poo the need, but I don't know.
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Thank you!
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I have never worn a compression sleeve/glove. Unless you actually have lymphedema, I don't know that one should. They are a hassle and wearing one incorrectly can actually cause problems.
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You may want to get measured before surgery so you have a base line. I never did so all they could say was "mild". Fortunately I never had to wear a sleeve & gauntlet full time. I do wear to fly and try to remember for repetative actvity.
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Ozma - I had four nodes removed and am battling a mild case of lymphedema. MinusTwo's recommendation to be measured before surgery is very sound. I, too, have mild swelling but hard to quantify since I wasn't measured pre op. My physical therapist told me that she would recommend wearing a properly fitted sleeve for the first year post surgery (I heard this two years out which my lymphedema was identified) She indicated that there were studies that it reduced risk of lymphedema incidence but she did not give me any copies of those studies. All that is to say, there is a tremendous amount our medical community just does not understand about who may develop this issue and how it develops. Hope you will request a pre op visit to get those baseline measurements (and to fit for a potential sleeve should you decide to go that route). One other thing that I have observed with a mild case, I do much better with Jobst which has a very low compression sleeve. I hope you have a clean surgery and you never ever have a problem with this stuff.
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ozma32 - I also agree that you should have your measurements taken before surgery. My hospital has been on top of it since the beginning. Part of my pre-op steps included a visit to the in-hospital physical therapy clinic to be measured and given small exercises to do post mastectomy (very important). My doctors also have been on the lookout for LE. My surgeon referred me to the LE clinic right away. My RO always checked for LE and my ROM. I do have a mild case, and I don't have ROM problems.
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