Lymphedema on Prophylactic Side?
I had a BMX with only a few nodes removed from the right side, but still developed lymphedema in my right arm, chest, side, and toward my back. I've started wearing a sleeve and compression cami and have had a lot of improvement (some 2 steps forward, 1 step back) but now my left arm is getting really achy and puffy. My LE therapist says she doesnt think it could be LE because there were no nodes removed on that side and doesnt know why I'm swelling in the other arm. There were nodes in my breast that were removed with the breast tissue, but she said if anything, I'd have swelling in my chest area, not in my arm since no axillary nodes were removed.
Has anyone else experienced this? Could just the trauma of the surgery damage the lymphatic vessels on that side, or is it accurate to say it's not possible with no axillary nodes removed? When I say swollen, I mean that when Im diligent about wearing my sleeve and doing the manual drainage, my LE arm is sometimes measuring 2.5 cm smaller than my non-LE arm. To me, that seems like a significant amount.
Thoughts?
Comments
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Nodes do not have to be removed for LE to developed. It can developed after any surgery or traumatic injury.
I have a friend who had minor non-invasive knee surgeryand she deals with a lot more/worse LE issues than I do and I had 19 positive nodes removed.
There are women here who have had similar issues to what you are experiencing. I'm sure some will be stopping by.
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thank you for responding.
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Hi, Mommy2,
Wow, I'm really sorry you're having to deal with this--bummer! I had one node removed on my left (breast cancer) side, the other side was prophylactic with no nodes removed and I have bilateral lymphedema--worse on the prophylactic side, actually. Arm as well as breast/chest LE can happen even to women who have no cancer and have breast reduction or enhancement surgeries, no nodes removed. That's because it's not just the node removal that matters, but the damage to the lymph vessels and the blockage caused by scar tissue formation. Also, recent research showed that some of us have more robust lymphatic systems than others, meaning different outcomes can certainly be expected. So, yeah--this is entirely within the realm of possibility.
That said, I really want to encourage you that you can get on top of this and take back control of your life. Bilateral LE is not easy, but no LE is easy. Get good help (if your therapist is not up to the job, keep looking until you find one who is), and take heart--it gets better, honest!
Gentle hugs,
Binney -
Mommy2, I also had bilateral mastectomy (propylactic on left side) and developed lymphedema on both sides. I was diagnosed on the prophylactic side first and about a year later on cancer side...3 nodes removed. Wishing you the best.
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Wow this is such a relief to hear from other women who have experienced this. Thank you so much for responding.
My dr, NP, and LE specialist keep saying it must just be that I had too much salt the day before, and they don't know what would cause my other side to be puffy that if not salt intake. I literally cant wear rings that used to be almost too loose, even though I have actually lost weight since the surgery.
Did you ladies have trouble getting your health care providers to take you seriously, or were they all totally receptive to the idea that you were getting it on the prophylactic side? I'm going to a fairly major cancer center and after reading these comments, I can't believe that they don't think this is possible. -
Ladies, I have been wondering the exact same thing. I have been experiencing some swelling on my prophy side also. Thank you for mentioning it, I though I was just imagining things, or maybe becoming a hypochondriac!
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I too am really surprised your LE therapist has told you that she does not think it is LE because you had "no nodes removed". You definitely do not need nodes removed to end up with LE; I have known people to end up with LE after surgeries, traumas, etc where there has been no "node removal", including breast augmentation. Even though I had no nodes removed, I was told by my BS that there was a risk of LE in any event because nodes can still be removed even if not purposely, and the trauma of surgery itself can give rise to the risk of developing LE. Low risk, but not NO risk. So far, knock on wood, I have been fine, but I was very fearful after seeing how my mother has suffered with LE in her left arm and trunk.
As Binney said, "it's not just the node removal that matters, but the damage to the lymph vessels and the blockage caused by scar tissue formation". I am frustrated for you that your doctor and LE therapist both seem to be dismissive of this possibility, because certainly you ought to be getting some treatment to help relieve the symptoms, along with some recognition that you are experiencing what you are (and not told it might just be too much salt! ). I have experience with being dismissed by medical professionals in other contexts, and so I really feel for you.
I'd probably be looking for another LE specialist. I see you are a major cancer centre already, but maybe if you post your location someone else around here can make some suggestions?
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Mommy2, I don't have a problem so much with the medical personnel not taking me seriously, I have more of a problem with the general lack of knowledge regarding lymphedema. When asking questions to a couple of lymphedema therapists, they looked at each other other and one of them said, "What did they tell us in that class?" I guess I was kind of shocked to learn that there isn't really a doctor that handles lymphedema. You are at the mercy of someone that took a few classes? (I realize some are more knowledgeabe than others). It seems that everyone wants to pass you off to someone else.
I asked the therapist what I should do about blood draws and blood pressue checks since I have it on both sides. She said, "That's a good question." I never got an answer. My GP said to ask my oncologist. My oncologist said to use the prophylactic side (even though the swelling is worse on that side). Before I was diagnosed on the cancer side, my surgeon had said use the cancer side. It seems like it's all just a big guessing game. I am really not sure what to do.
Hope you have better luck than I have. I am just thankful that my lymphedema isn't too severe (yet!)
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The first LE therapist I saw had it in one leg,, due to a bicycling accident and injury. NO nodes were removed.jarris; have blood draws from feet and BP's from legs. When I recently had my colonoscopy,, I was laying on my LE side,, the good side had the IV and they did BP on one leg.
it is seriously amazing how little MD's know about this.
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glennie - It is amazing how little many Drs know about LE! I was fortunate in having Drs who weren't ignorant about LE.
Jarris - leg/foot needs to be used for draws and BP if you're dealing with bilateral surgery and LE. You may have to 'stand your ground' and be pro active for yourself rather than allowing some other to comprise your health.
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kicks, its interesting that you say that about blood draws.....
Even before the contralateral side started swelling they were finding it nearly impossible to draw from my "good arm." as in, i often had to come back several days in a row before someone could get a vein. We tried my foot once but then i heard and read scary things about DVT risk. Any thoughts on that?
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The last time I had blood drawn, they used my hand. I mentioned using my foot and they said, "You have to have a doctor's order for that, and believe me, you really don't want to use your foot." ???
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Mommy2, if you have a history of DVT it's not a good idea to use the foot. Otherwise, it does in fact require that the doctor write "Draw from foot only" on the blood test order. If you call the lab and ask if they can do it they'll almost always tell you no, but if you show up with the doctor's order they'll do it. Don't ask. I don't find it more painful to use my foot, but if you're worried about it you can use some Emla in a timely manner.
I recently needed an IV, and since I also have LE in one leg they were using the good leg for blood pressure. So they used my neck for the IV. That didn't hurt more than an IV usually does either, but the tape made it hard to turn my head (and I react to adhesive, so my skin didn't settle down for a few days).
I too am seen at a fancy-schmancy cancer center, where the head LE therapist doesn't know which end is up and isn't interested in learning. So naturally they're not doing squat to educate the oncs or nurses there either. I have trouble getting flu shots since my PCP doesn't do them and the clinics won't do anything but arms, so I asked my onc to do my flu shot. She said, "It's fine to get it in your LE arm." Uh…noooooooooo. Needless to say I go elsewhere for my LE care.
Just stand your ground. It's your arm, not theirs, and it's you who will pay the price for their ignorance, so educate, educate, educate! Smile nice, but be firm, and hand them some educational material--like this page written especially for doctors and nurses by a doctor who has LE:
http://www.stepup-speakout.org/essential%20informa...
Gentle hugs,
Binney -
Hi Mommy2Six, Im a bit late in on this but just weighing in as another one with LE on prophy side, though mine is not technically dx'd as LE it's strongly suspected as such and I wear a sleeve on that side as well. Also as mentioned above, surgeons can inadvertently "take" some nodes on the prophy side because of the nature of the surgery. As for foot draws, no they are not fun. It's what I've chosen because I don't want to risk my "good" arm anymore, that took the brunt of chemo etc. If you find the right person to do it, the difference is night and day. I'd far sooner have a competent nurse than an incompetent surgeon doing it, and indeed that's how it worked out for me.
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I have to say, I'm pretty overwhelmed by all the responses. I can't believe that everyone BUT my drs seem to know about this.
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I'm late to this thread too, but thought I'd share my experience too. I had BMX in January 2014, with sentinel node biopsy on right side only (3 nodes removed). Developed LE on left side early in recovery, and right side followed within a few months. It has been a much bigger pain than the BMX itself.
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Hi All -
If I am beginning to suspect that I may have a slight (mild) case of lymphedema, my question is which doctor do I consult about this - the surgeon, RP,or MO? Actually I may had it over the past three weeks or so. Someone with medical experience, not necessarily specializing in cancer, but a person I trust implicitly suggested that I have it checked. A little background on me for those who haven't seen any of my posts. I had a lumpy in the end of September and finished 33 rads on 12/19/14. I had radiation dermatitis on the right side as well.
MarieBernice6234
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Marie, any of your team can write you a referral for LE evaluation and treatment. The important outcome here is that you get the referral, so pick the provider who seems most likely to take your concerns seriously. Sometimes the surgeons don't realize the extent to which LE pops up in their patients, because we don't have very long follow up with them. That can make them unintentionally deniers of our reality.
Have you looked at the step-up, speakout site? There's a page written by a physician who has LE after BC, for physicians to read--a great take document to take with you, whichever physician you choose. There's another page that helps you figure out how to find a qualified LE therapist to do the evaluation and then give treatment if appropriate.
Here are links:
http://stepup-speakout.org/Finding_a_Qualified_Lym...
http://stepup-speakout.org/essential%20informat%20...
Best wishes, and here's hoping it's some transient, innocuous swelling or symptoms, and that you get a proper LE evaluation that reveals you don't have it!
Carol
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Any Dr can give you a referral to see a LymphEdema Therapist. Unfortunately, most/many MDs have no clue about LE. I was fortunate and was referred to my OT who is an LET. Find someone who does have LE education/experience - not just some PT who claims they 'know all about LE'. Remember that LE is not exclusive to post BC surgery. It can happen after any surgery or traumatic injury. Get a referral - the sooner you see someone the better.
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update: my prophylactic side measured 3cm bigger than my LE arm today at appt with LET.
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Rats, mommy2six, that really stinks. So sorry to hear this. I hope the LET has a good strategy for you.
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Everyone is finally convinced that I do have LE in my left arm (I've heard 'cut back on your salt!' for weeks and weeks.) I wore a Lymphediva sleeve for a week and went down 2.4 cm. LET is ordering my custom garment now.
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Hi All -
Just had an evaluation by a cancer rehabilitation specialist as well as someone trained in lymphedema has revealed that I do have "mild" cording and/or scar adhesion that are presenting with the same symptoms. I also have mild lymphedema - grade 0. I will be getting a sleeve within a week or 2. I have to wear it initially for two weeks or so. Then use in special situations such as flying which I will be doing in October. At least everything is "mild" that is the best time to catch it.
MarieBernice6234
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Marie, that's a great LE diagnosis, if you have to have an LE diagnosis. Mild is great; mine's pretty mild too. But I do want to check--you're getting a gauntlet with your sleeve, right? Because it's best practice to wear hand protection when wearing a sleeve, as the sleeve can push lymph fluid into your hand, where it's hard to treat. Some women do wear a sleeve without hand protection, but it's after dealing with LE for a long time, and they know that their hand does not take on fluid.
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Hi, Carole57 -
I honestly don't know if she is ordering a gauntlet as well as the sleeve. I will ask tomorrow when I go for my first official therapy session. I hope not because I am right handed and wouldn't that make it difficult to write etc?
MarieBernice6234
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Mariebernice, it's true that a gauntlet can make hand work a bit clumsy, but if your palm and/or fingers swell up, that complicates matters, too. I hope you had a productive chat with the therapist when you had your session. Here's an article by Dr. Andrea Cheville of the Mayo Clinic, explaining why she believes we need to wear hand protection when in our sleeves: https://www.lymphedivas.com/en/hand-protection
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Hi All -
I have finally approved by the insurance company for my compression garment. I should get it from the vendor by the end of next week. So far the lymphedema therapist I see for this has not determined that I need a gauntlet. That can be re-evaluated once I start wearing the garment. Trying to master the simple massage technique for my arm. It always seems better when the cancer rehab therapist does the massage. Starting to work on exercises for range of motion and strength. Hopefully, I can make the transition to wearing the garment.
MarieBernice6234
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mariebernice, I wonder if your therapist is up to date on best practices for managing LE. Here's an article by Dr. Andrea Cheville, a well regarded LE clinician and researcher. It makes a strong case for always using hand protection when wearing a compression sleeve. The article is on the website of a garment maker, but it's not a commercial for their gauntlets. Dr. Cheville is the 'real deal' when it comes to LE, and I would take her advice seriously.
https://www.lymphedivas.com/en/hand-protection
I just don't think it's a good idea to wait and see what happens if wearing a sleeve without a gauntlet. Some women do wear sleeves without hand protection, but they know from long experience that in their cases, the lymph is not moving into their hands. When we're new to LE, I sure wouldn't bet on being in that group. Once it moves into the hand, it's hard to manage. Not worth the risk, in my very humble opinion.
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oops, Mariebernice, I see that I'd already linked to Dr. Cheville's article. I don't mean to press the issue, sorry. (But I sure would hate to think you might get LE in your hand...)
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Mariebernice, I'll second what Carol is urging, because I did have my LE move into my hand when I was using arm compression without hand protection, and no one was expecting it to do that. Hands are hard to manage, so better to prevent than to "wait and see." With LE, we often have to be our own advocates. There's no shame in that, and no regrets either!
Be well!
Binney
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