GRRRRRRRRR I HATE LE..........
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Someone from another thread told me I should look into all this, so here I am. My surgeon told me he doesn't know how many nodes he took, just took them all! My lab work says 32 nodes...? I have yet to see anyone loose so many nodes, and wonder if there has been some kind of mistake.
I am still in the healing process, get the results of Oncotype test back this week to decide on chemo.
Because some nerve was cut, have a hard time extending arm. I have TE placed, so my movement is very limited! When I woke from surgery, had severe swelling, and hospital staff did nothing. It was my husband who said we need to get it elevated. I have slept with it elevated ever since!
After reading so much of what you all have written, I am a Little freaked out! I have crappy HOM insurance, and wonder if they even have a specialist to send me to.
Should I find one now?
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First of all, what my surgeon explained is that they take all the nodes in a specific area, and how many that is depends on your particular anatomy.
My onc was actually more helpful and concerned about the swelling than my surgeon. When I recently had more swelling after a chemo TX, he put me on low dose of anti-inflammatory, diclofenac, to help resolve it.
I strongly urge you to find a PT who is specialized in dealing with LE as soon as possible. prevention and early intervention can make a big difference, as far as I understand.
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Oh Binney not you too. She told me for the next two days to keep it as much as I could and then get back into my normal routines. Driving home made my calf hurt...I think its the nueropathy in my leg that is actually hurting. It's not too tight because I can run my fingers far enough down to rub where it hurts....which is exactly were the numbness starts. Just like the arm, I think you just have to adjust.
As for as a shoe...I was given this too wear. Seems to work okay and she left lots of stocking at the end of the toes and then pulled it over the first layers with a good two inches hanging off so it would be like a loose sock. If it gets to bothering the neurpothaty then I can just pull it loose and let the toes freezes. She also said the top layer could come off if it was too much for sleeping. She likes to use a Comperm LF on top of her leg patients to help keep the bandages in place.
So does that sound about right with what you have had done? I can't believe they didn't give you a shoe. She told me in our first meeting that she would because once wrapped most people can't get their own shoes on at all. I wear crocs and yep only my toes will go it. lol I just wish I could go back tomorrow but they are closed tomorrow...but not today for new years. shaking head I think because they are remodeling.
http://www.darco-online.com/trauma_care_cast_boot_bodyarmor_castshoe_protection.html
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Sorry to hear about the leg LE. Is that also from BC tx? I ask because when I went to the class on LE, they said that you could only get LE from BC tx in the quadrant where the nodes were removed, so only from your neck to your rib cage and your arm and hand. Since the BS was wrong about risk of LE, I am wondering if the NP who taught the class was wrong about this.
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DM13 It is still early to know whether your swelling is from LE or from surgery. Did they give you exercises to do to get that arm moving? If nothing else it wouldn't hurt to ask to have it evaulated for frozen shoulder and LE. Have you done any readying on the Step Up Speak out we page yet?
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Happy to help you! Let me know how it goes. Plus go to free avenue coupons on line and print them out to use in store if you go. Good Luck. They aren't the best quality but good enough for me. I'll give you more info on the higher quality bras I have later.
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Kitty, my therapist said it's early stage and the tissue is still soft, so we're trying a daytime compression stocking instead of wrapping yet. I have a feeliing, though, that it's going to need wrapping to get it under control.
That cast shoe looks really light and manageable! No, I'm sure my therapist doesn't provide shoes, and from hanging out on the Primary Lymphedema discussion boards I'd say yours is one of the very rare ones who does.
Kay, I don't know what my leg LE is from, but I suspect I must have a very ineffective lymph system since it's so easily compromised. Possibly I have primary lymphedema that only manifested with the cancer surgery. I've had LE for eight years and nothing surprises me anymore.
But, yes, generally speaking LE caused by bc treatment is restricted to the involved quadrant (or quadrants, if surgery was bilateral). TRAM and DIEP surgeries can also trigger leg LE, though that's rare (and I didn't do any recon). Maybe it'll be clearer as time goes on, but at the moment I don't have an explanation for it. Fortunately it responds to MLD, and also fortunately I'm capable of doing that. It's only the lower leg, and I'm hoping to keep it that way. Did I mention that I hate LE?
Grrrrrrrrrrrrrrrr!
Binney0 -
Thanks for the info Binney. You may hate LE, but you are probably the most positive person I have ever come across. I am hoping that hanging around you here, that will rub off on me. The NP did say that they do not know why some people get the LE and some don't, but they think some people's lymphatic systems are possibly weaker to begin with or some people other areas (would have been the left side for me) can more easily take over the troubled parts. I suspect that as quickly as the LE came on in me that I have an ineffective system. And I did have DIEP so I will keep that in mind. Thanks so much for sharing your wealth of info.
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My therapist told me today that there is some new studies on LE suggesting that for some it may be related to our genes. I have a feeling my leg is a combination of many things. I have always had big legs as well as my sister his is thin. I am just all to happy that somebody noticed it before it got worse.
Binney even though mine is Stage II she says it feels more like stage one. She too was shocked over the percentage because just to look down it is not that noticeable. It is when my legs are side by side and on the table that it becomes so obvious it is bigger.
I haven't had to take anything off yet. So I feel like I am doing great! wrong....it is killing me. I keep rubbing and mashing on the area that hurts..it's straight up the side of the leg where the neuropathy is. Then I try to sit a little different to take the pressure off that area and it will cause my leg to cramp. Great...but I am hanging in there. Hoping to manage till tomorrow night so DH can help me put them back on after a nice bath.
Now fingers crossed I can sleep in this thing. Thank goodness it is cold tonight!
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Kittydog, there definitely is a genetic componenent, and a good study that showed that women who got LE had lousy lymphatic systems in their good arms.
I've had ankle swelling for a couple of years now: I called the onc, and was told to wear compression socks, but when I saw my PCP she felt the left leg--where I have a lot of varicose veins--was noticably bigger and had me get an ultrasound to rule out DVT--ruled out.
My LE therapist is aware of this, and works on my legs, and we haven't said "LE" yet, but I do wear compression knee highs--15-20 mm.
I'm blaming tamoxifen and varicose veins, but I wouldn't rule out a bit of primary LE underneath it all.
I flew in October, two flights in two days, and my arm was fine, my ankles were horrible--despite the compression stockings--but my ankles have always swollen on planes.....
Always something
Kira
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You guys are making me think. My sister has never had BC, but has had very bad swelling in both legs for years. Her calves are really large. It has definitely gotten worse over the years, but she says she started noticing swelling when she was just a kid. She has seen the PCP about it and wears some kind of special socks. I wonder if it could be something with her lymphatic system. I guess it wouldn't make much difference with tx for her, but I will mention it to her.
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Kay, if she's willing, you might encourage her to see a qualified LE therapist. Genetic-related LE is called Primary LE -- our surgically-induced LE is called Secondary LE. Treatment of primary LE is important, to avoid serious skin changes and eventual leakage of caustic lymph fluid and (of course) increasing infection risk. Also, mobility can be an issue with primary LE, especially long-term. Some reduction will still be possible, and she will probably find that both more comfortable and much easier to get around. Worth pursuing!
It is not uncommon for people with primary LE to go undiagnosed for decades, so it's not ideal but treatment can still be quite beneficial. Primary lymphedema can appear at birth or at any time after, and it's often triggered by some type of trauma -- surgery, an injury, a fall, or (in women) pregnancy or childbirth. Since these people usually aren't aware they're even at risk for LE, the swelling is a puzzle for both them and their doctors. It's a rare doctor who even thinks of lymphedema, and after testing for other conditions and getting nowhere they generally just give up. No good!
Primary lymphedema can be caused by a family genetic anomaly that gets passed down off and on through the generations, or it can be an individual genetic mutation. It involves missing nodes and/or limited or non-functioning lymph vessels. When looking into your family's past issues with lymphedema, ask about relatives who had "swelling," "dropsy" or "milk-leg," which were terms used in earlier decades to describe lymph system-related swelling.
Primary LE is officially a rare condition and an "orphaned disease," meaning it is largely undiagnosed and untreated world-wide. That needs to change!
Just food for thought (although I prefer real food for eating -- like chocolate, for instance...
)A cyber-hug for you and your sister both,
Binney0 -
You know, I really like my LE therapist. She's sympathetic, she does a wonderful tx, she makes sure I have proper garments - everything you'd want.
BUT
Not once has she even mentioned chocolate as part of the treatment. NOT ONCE!
Talk about undertreated....
Leah
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Thank for all that info. She is considering mine secondary due to surgeries...but I know this leg has always had a tendency to swell. I was in a bad wreck in college. Think van no seat belts and we filliped the van 3 times. I have had back problems every since and broke my collar...the worst type break where it comes out the skin.
Just recently my brother has started with swelling in his legs. He started a new job and does a lot of traveling and flying. He discovered the over the counter compression socks when down at Thanksgiving and said he immediately felt a difference.I actually slept ok last night. Woke up once with my heel killing me. Changed positions and it went away. My problem today is the bottom of my foot hurts. I don't feel anything positioned wrong but my thoughts are that the padding has slipped down and I am walking on it. So currently have it up in a chair. Tomorrow I begin decompression and she will re-wrap me. I am going to take it off in the morning and get a shower and let DH give it a try so she can tell me if he is doing it right.
On the lighter side of things...I did weigh when I got home yesterday and today I weighed once I got dressed and shoes on and my weight is already down 2 pounds. Yes I have lived in the bathroom yesterday and last night.
I too am thankful that I had two Dr.'s who thought it was LE. I wonder though had I said something before cancer what would they have thought. Heck lets just have a swell party and wrap all our limbs.
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Kitty, that's quite a visual -- everybody sitting around like beached whales. Eating chocolate, of course.
(Leah, what's up with your therapist? What's she waiting for, a study?! Actually we should do our own, test out different kinds of chocolate: Belgian, Swiss, Godiva. I got a huge bar of Begian chocolate for Christmas and I'm already seeing a great response.
)When's the party, Kitty -- BYOC!
Binney0 -
Kitty - my dh brought a video camera to one of my sessions with my LE therapist (with her enthusiastic permission) and videotaped her as she wrapped me. She was very good explaining everything she did as she went along - it's been a really helpful reminder since I (fortunately) don't have to wrap very often.
But you're right, Leah - as wonderful as my LE therapist is, she also has never mentioned chocolate as a treatment . . . hmmmmmmmm . . . a conspiracy by LE therapists to keep it all for themselves???
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Count me in for the party! And boy is my PT going to get an earful when I see him on the 12th. How dare he put me at risk by withholding chocolate! I'm reporting him to the chocolate police.
Glad you're doing better kitty. I am definitely going to mention LE to my sister and tell her to question the doc about it. I think I'll also see what my PT has to say about it.0 -
The LE therapists do prescribe 'chocolate bar' foam for swelling...isn't that the ultimate bait-and-switch? Sounds like a Federal Trade Commission complaint in the making!
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I love this 'grrrrr I hate LE' thread! There's so very much to complain about, although in my case, LE is mild, easily controlled, and as I read everyone's posts, I am SO struck by not just by how fortunate I am, but how all the rest of you take this #@*& condition in stride and help each other with tips, accurate information, and by just providing a cyber-ear to listen to the frustration!
Despite my mild LE, I'm none too happy about what I think was intentional under-disclosure of my risk with SNB. I might have avoided that SNB had I understood my true risk, because the SNB was an abundance of caution, not (in my view) 100% necessary. Water under the bridge as they say, but it's so under my skin, that I've started a patient education and advocacy effort here in W. Michigan. It's fledgling so far, but already I have found support in some surprising circles, so I am much encouraged about what can be done.
Part of my advocacy effort is to bring the frustration stories front and center, to be able to tell anyone who will listen that real women are having real issues with how LE risk is disclosed, how hard it can be to get the surgeons to take symptoms seriously, insurance issues...and on and on. So, I put up a website for the sole purpose of gathering stories: www.lymphedemaspeaks.com. I am posting that link here, because the women on this thread are LE 'regulars' and I have read some jaw-dropping stories here that can be very useful for anyone who needs real stories to illustrate problems and frustrations when recruiting allies for an advocacy effort. The challenge of stories posted on bc.org is that they tend to get buried in a sea of (very valuable, consoling, fun, helpful) chatter about all kinds of related topics.
So, if you have some time, would you consider popping into www.lymphedemaspeaks.com to see what it's about, and if you have even more time (yeah, right) --register as a user and tell a story or two? You'll find that the site is organized in themes, such as 'who's paying for this' for stories of insurance frustrations, or 'going to the oasis' for stories about the frustration of finding the right LE therapist, and the glory of finally landing the right one.
Nordy and Tina, if you're reading this, all the recent discussion in a thread or two about exercise is prompting me to put in a new theme about the challenge of figuring out how to incorporate health- and sanity-building fitness into a life that includes LE. I'll add that theme soon!
Anyone who registers and posts a story should know that it's there so that anyone can cite it or copy it for use in LE advocacy, but you can write under a screen name if you prefer. I have a registration option for giving some info about your BC history, age, location etc.,, for future use in case I get enough stories to be able to do some anecdotal trend analysis, but truly that information is optional.
I have agreement in principle to meet with the senior reimbursement officer (an MD) at one of the mega health insurance companies, from whom I hope to learn 'how it works' to get reimbursement policies changed. I hope, hope, hope to be able to infuse my discussion with this gentleman with stories or excerpts from stories that will help him see the issues from an LE patient's perspective. In my dream world, that insurance company would give bigger reimbursements to breast surgeons whose patient-survey results demonstrate that they are providing LE risk education and referring for pre-surgery baseline measures, just for starters. (Obviously, this will be a long-shot and an uphill battle, for sure).
If you have a story to tell --my motto is 'complain with a purpose' --please consider posting it at www.lymphedemaspeaks.com.
Carol
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I think our lotion should be chocolate and our layers scented chocolate.
I might have to take my camera tomorrow. I had to unwrap tonight because the toe area was hanging but a few loops only. Let's just say had I not eaten my Christmas Lindor Truffles already I would have eaten the whole bag. Very frustrating trying to tell DH what to do...It all looked so simple when she did it...I figured we would be a pro at it since we know how to do my arm...but she used foam and it does not wrap the same at all.
So frustrated so I going to bed to read something from my nook that I got for Christmas.
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With all the recent talk about lower extremity LE, I wanted to mention ( or re-mention) something which may be helpful down the road-- though probably not during the super bulky bandaging phase. A few years ago, while wearing a very clunky brace for an orthopedic injury, I was clued in to the fact that Nordstom will sell mis-matched "pairs" of shoes. I was searching for three pairs of Dansko clogs and needed the right and left two or three sizes different from each other. I called one of the stores nearby and they did a search all over the country to find what I was looking for. Within days, 6 different boxes arrived from six different locations, each with one shoe. They were very gracious and helpful, and equally so with returns -- which I sent all to one location. Hope this is a helpful tip. Sorry if redundant-- I know I posted about ths once -- not sure if it was here!
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I had a coworker who had one foot significantly smaller than another because of polio as a child. She had a really difficult time getting shoes because one foot was in a child size and the other adult. She bought all her shoes at Nordstroms and they only ever made her pay for one pair and were very helpful to her. I just thought that was so great of them.
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I know what you mean Grrr...I went for theraphy for a year and then went to a doctor who treats it and he prescribed a flexitouch machine that works wonderfully. My insurance paid for it also. It is like having a therapist at home.
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Note to self: whacking your LE hand getting out of the car is a very bad idea. grrrrr
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And why is it that we always whack/break/cut/burn that side?
There was a patient perspective in Journal of Lymphoedema, where a woman developed LE after whacking her hand on a car mirror in a parking lot. It was years out, and she was just stunned.
Kira
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Well I got measured yesterday and I am half way there already. She does the Le...what ever method. lol I can't remember now. Any she taught me some exercise to start trying to get some strength back in my legs...yeah I only asked a year ago for that help. Even though the LE leg has issues my other leg is much weaker. I can hardly do the leg lifts. Once again we should always listen to our self and find somebody who will listen. I have known since chemo something wasn't right. Oh well.
She will have somebody come in Tuesday to measure both my legs for knee highs and start teaching my the MLD. She did get permission to treat my arm so I will start two days a week with that after my leg. I feel good about the change. Getting ready to unwrap and take a nice bath. The DH and I will have a nice long argument over getting it back on. lol Honestly it is the foam making it so much harder. The fluff at least stays in place. I know it will
just take time a practice. grrrrr
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I am so happy to hear that your new therapist is working out. Great news! Brownies for everyone!
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Wow, Kay, you've really been baking lately! Bet your house smells wonderful.
I'll be right over...Kitty, I'm sorry it took so long to get help. Grrrrrrrrrrrr! Take it easy and steady, and before long you'll be gaining some strength back Whew!
Gentle hugs,
Binney0 -
Well it is my birthday tomorrow. ;-). Come on over for some ice cream and brownies.
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Kay, Happy Birthday!!!!! I hope someone else is actually doing the baking, and the ice cream scooping, and that you are being treated like total royalty for the day!
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