GRRRRRRRRR I HATE LE..........
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Thanks Kira and Dawne-Hope for commiserating! And Kira, I really appreciate the paper for providers. I am going to print out LOTS of them. The problem is that lack of knowledge is only half the problem...if you know what I mean! The docs who need most to be educated are so often the ones least amenable to learning from us. But on this subject, I want to tell you about my recent experience at the Center for Restorative Breast Surgery in New Orleans where 6 weeks ago I had my implants removed and a DIEP flap autologous reconstruction. The day before surgery is a full day of pre-op appointments. All women, along with whoever they've brought with them ( husband, friend, mother, sister) meet with a LE educator as well as a LE therapist. Since I already know an awful lot about LE, my patient education session was not that startling -- tho my husband probably learned some stuff, but very reassuring to know how seriously they take LE. At my therapist appointment I was measured in both arms, given a bright green bracelet to wear (I wore them on both wrists) to indicate at risk limbs, and outfitted for wrapping prior to surgery. The therapist cut and fitted foam and then packaged up all of the various layers of bandages , labelled them and said they would be waiting for me next morning. This is standard for ALL patients. EVERY WOMAN is wrapped before surgery, regardless of whether it is their first surgery or they have pre-existing LE. Another of my appointments that day was with the anesthesiologist and together we decided on location of my IVs and location of the BP cuff that stays on throughout the surgery. There was no pressure and they were completely amenable to all of my wishes. Yet another in this full day of appointments was with the surgeon and we also discussed these issues. Again, they were willing to do however I was comfortable. I had met Dr Massey a number of months ago and she knew I was at the center. Even though she was not my surgeon, she popped in at 6:30 AM on her way to the airport heading out of town, to personally massage and wrap me. Actually, the LE therapist who comes to get each patient ready for surgery had already completely wrapped arm - Dr. M removed the bandages and did them all again, herself ! I felt very well cared for. It was extremely kind and generous of her, and a very calming, confidence inspiring way to go into surgery. The morning after surgery, the LE therapist showed up bright and early for massage and was available every single day after that. For days my vitals were done every four hours. I never had to remind anyone to take BPs in my leg , nor did I get any grief about it. (For the past year I have had to fuss and argue at every doctor appointment I ever went to and was not able, a single time, to get my BP taken competently in my leg. Not once!) At NOLA they usually discharge you on post op day 3 or 4 and you stay at a hotel until post op appointment with the surgeon on day 7. They had arranged to have the limo (that drives you all over while you are in town,) bring me back and forth for outpatient appointments with the LE therapist -- handed me the schedule with the times the car would arrive. And just to add...in case you are thinking that I got all this amazing attention because I was in such rough shape.... I have the mildest of mild LE. This is just what they do!!
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Jo, that is a bummer!
Swelling in just one part of your arm is entirely possible with LE, and very likely what you're dealing with. But another possibility for sudden and unexplained swelling would be a possible blood clot, which would need to be seen to promptly. So if you haven't talked to your doctor yet about this, please do -- ruling out other causes of swelling is important, and your LE therapist may insist on it as a first step anyway.
Please keep us posted!
Big hugs,
Binney0 -
Jerusha, how perfect!
How are you doing now? Rest up, heal quick, be well!
Binney0 -
I wear an underwire from time to time...it's not ideal, but it's not always a disaster.
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Have never stopped wearing a bra, but today tried the underwire. so far so good, but I guess tonight will tell when I take it off, but for now it actually feels better then the ones without wires. my thumb just fell asleep again..............maybe i wrapped my palm too tight. what a pain in the ass. my LE says I have to make sure I don't put too much pressure on the web between my thumb and pointer finger................probably did..........oh well hopefully it wakes up soon cause I'm not rewrapping it
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Deekay, the warning about underwires is because they can cut the lymph flow below the breast, which can result in truncal swelling. For that reason they're not recommended for post-breast cancer, and the warning is for life.
That said, as Dawne-Hope says, we're all individuals, and some react differently than others.
Be well!
Binney0 -
Hye Binny you know your stuff, so maybe I should forgo the wires......................I have enough problems without creating more......................thanks for the heads up
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Jo-5 take care
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Here is my take on the underwires.
Since I am large breasted, something is going to have to support them. If I wear a non underwire it has to have a pretty sturdy elastic band all the way around....so something is going to get trapped.
The one compression bra I have that fits causes more swelling than anything else for this reason.
With the underwires, Only part of the area is getting cut off.....also it's not a straight line.
I have one special occasion bra that does seem to create problems, but two others that don't. I even put some silverwave fabric in one of the underwire cups, and it really seemed to be okay.
That being said I don't wear them all day long.
I basically wear a stretchy "casual" bra most of the time, but I wear an underwire probably 5-6 hours a week, and I have not noticed it causes real problems.
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Thanks so much for the input on underwires. I just could not remember why I had been given the caveat for no underwires and if it was LE related. After your advice, I think I'll err on the side of caution and stick with no underwires. Maybe I'll get one underwire, pretty bra for occasional very short term wear. I've been lucky to only have mild LE even with 20+ nodes removed and am very cautious to not provoke it. Thanks again, my friends, best to you each of you--so grateful for this forum. deekaay
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I think we are all in a little trouble with our choice of bras.......if yor a D cup the bras without underwire seem t do nothing and are tighter because you need the support, and at times they do cut into the shoulder......................however I can also see the wired bra problems since they too cut a little, but are not nearly as tight around the band as the ones without wires.either way if your big breasted you have your problems. Like everything else with BC its always a crap shoot.
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ducky...you put that perfectly!!!!
I think the best thing we can do is to mix it up....so each area gets a "break"
My breast LE got really bad this week when I was wearing the compression bra, so in desperation I tried the silverwave with the underwire for the first time.
I was actually surprised how much better it got.
The underwire actually held the siverwave in place...in the sportsbras, it tends to slip around.
It also looked a lot less bulky with the underwire holding it down.
So again, I have only tried it once, but it was the first time I was able to wear the silverwave under something fitted.
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Kira, Binney4, Kane744 - Thank you for your insight regarding the wrapping. *Sigh* Not the news I wanted to hear but I trust you all. No self-taught wrapping. I get it!
Binney you asked what my situation is: I saw an LE OT in the Fall and my sessions were cut in half with her because I was dropped by my insurance. She showed me how to do some exercises, gave me a handout on how to do the MLD on the last day ... I probably had six sessions with her ... and she did the MLD on me about an hour each time. It was dramatic. But I don't think I'm doing it correctly because it doesn't seem to have an effect when I do it. It does decrease the pain level but I don't notice a measurable difference in the swelling. After she did the MLD on me ... I would swell back up within hours. She told me at that time to get the isotoner therapeutic gloves that you mentioned and the lowest compression arm sleeve just as a precaution. The isotoner gloves did not hold up very well. I've bought some mediven95 gloves that work pretty well ... until a few weeks ago. Summer is doing me in! The swelling in my fingers goes down a little during the day but not a lot ... I always swell more at night ... so I cannot get ahead in this summer heat. I've noticed that the swelling is moving from my fingers down to between the knuckles on the backside of my hand. Our worst nightmare ... it's getting worse. I need to make some phone calls this week starting with my LE therapist's office to see if we can work out some kind of payment schedule or if they will see me at reduced rates. She's one that I have to a doc's referral ... without insurance it gets costly. See my PCP for a $100 just to get a referral ... see my therapist (IF they will take me without insurance) and then hopefully only have to pay $75. She was reluctant to teach me to wrap in the fall ... so is it even worth all the hassle to try and see her again? I feel like I have no other options, though. All my cancer docs are 2.5 hours away in the city and neither my PS nor my BS acknowledge that I have a problem. My PCP doc was the only one who listened after I had a meltdown in his office. I live in a rural area and my options are limited. It is so frustrating! You all know. That's my grrrrrrrrrrr for this afternoon. And a big *sigh*
Jerusha - Your story makes me cry, makes me happy, makes me angry too that so few places are like NOLA. It's good news that there are at least some out there who get it. It's frustrating that there are so few. It gives me hope that in time, we'll get the attention and understanding that we need. I've told you this before ... but I am soooo happy for you! xo
JO-5 - I'm so sorry. Wish I could say something to make it better ... wave a magic wand and make it all go away. I'm hoping the therapist can really help you. [[hugs]]
Please pass the brownies ... I need one or two or three ....
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I guess because I'm retired, I don't feel bad about not wearing a bra. In summer, it's terrific and in winter pretty great too. I am a D as well. I gave all my expensive underwire bras to my niece. I've tried this bra and that bra. Nothing worked but they all caused swelling. Went to compression cammies, same thing. Caused swelling plus in summer they make me sweat like mad. When my LE therapist said not to use anything and see how it goes, well, that was my ticket out of the torture chamber! Haven't worn a bra since and it's grand. Like I've said gazillion times, for everyday when I'm running errands, I wear those pasties so as not to shock whoever's looking. When we have a more dress up thing to go to, I have a stick on bra, which I can arrange to even give me cleavage. It has no underwires, no straps, no back. It's wonderful. Cannot sing its praises enough. It costs $32 and lasts a long time, especially if you don't wear it every day. Honestly, I love it. And my swelling has gone away as has the pain. I do have to make sure to do my MLD twice a day, but other than that, I am FREE.
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Kane, WONDERFUL! It takes awhile to work out the best of all possible worlds with this stupid LE, but what a relief when we find something that works.
Cookie, YES! to mixing it up with the bras and compression garments!
As Kira's LE therapist puts it, we have to "keep the lymphedema guessing"! Fair enough!Jo, you're going to get on top of this -- hang in there!
Dawne-Hope, since your therapist was reluctant to teach you wrapping, by all means phone and ask her why before you go. You want her full cooperation in order to make it worth your investment, so you need to understand where she's coming from. Arrrrrrrrgggggh!
Gentle hugs,
Binney0 -
I am fortunate that I came from a medical background and niece is a PT. I started LE treatment before it could become a problem the day after surgery...my hand & elbow have slight swelling and they throb or are numb. My niece just had me do as much as I could to pain limits...the surgeons deny deny deny and my !st ONC thinks LE is in our heads! Both of them were not interested in teaching me how to deal with complications so I stopped seeing them. My current ONC group are wonderful and they work with my GP so whoever can see me first does interventions. I changed from a desk job to commercial cleaning to be active...I have managed to lose wt consistently and I am hate the gym so this works for me. (started at 210 down to 178!) It concerns me that they just blow folks off when they should be helping with prevention rather than waiting to see if we develop the complication. We need armed with as much info as possible to keep us healthy. They have those weird leg compression booties/leggings for post care, so couldnt we get something like that post for an arm?
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Okay, so I'm reading the "After Rads" thread and there's a bra suggestion by "Chabba" for the DD gals that looks pretty good: it's a Playtex 18-hour front closure bra.
http://www.kohls.com/upgrade/webstore/product_page.jsp?PRODUCT
Has anybody tried it?
Binney0 -
I have not seen that one. I think I will make a trip to khols tomorrow. I need something better than this sports bra. I finally am going for my foob fitting Wed. fingers crossed I don't react to it. Stay tuned...that is if my chemo brain remembers to go looking in the morning.
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Hi ladies, I just had a thought about this bra issue. I have some " sleep bras" from Marena, one of the companies that sells post op compression garments. This bra is in their "everyday wear" ( or something like that) line. It is NOT compression but does give a bit of support. It hooks up the front so the support is from the sides ...no weight carried by your shoulder. It fits like a vest so there is nothing constrictive at the shoulder, on the back, or under the breast. No wires, no bands. It is silky soft and dries overnight. It would not be the thing to wear under tight clothing as the gathers along the front closure would show. I am a 36 C-D ish size and the XL is pretty loose and comfy. I also have a L which is a bit more snug, but not constrictive anywhere. Marena is lovely to deal with . They have overnight mailed stuff to me for free and are easy with returns. I adore these bras.
BTW, spread the word that after mastectomies, with without reconstruction, many insurance companies will pay for bras -- every year, forever! Some companies have various parameters, but some are unlimited -- any # of bras of any kind. Fancy European lacey bras from Nordstroms...you name it.(Nordstroms will actually file the claim for you)! Generally you just need your doc to write "BRAS" on a prescription pad.0 -
I can not go more then an hour without compression. I am good in a sports bra for about 5-6 hours and then I am ready for compression or a binder. For the most part I wear my compression bra/vest's or binder 23/7 and I HATE IT!!!! I would love to wear a pretty bra but after a few hours I hurt.
I just had an appointment with a new PS. I had quit a bit of pain a few weeks ago and thought my implant had flipped or bottomed out. I have mild LE in both arms and my breast/back, barely enough swelling to be visible but more then enough to hurt. During my appointment the PS kept asking about my pain levels and it was so frustrating! I always ache with this LE but this new pain was raw and sharp and literally had me call out in pain. The PS did a thorough exam of the chest wall (where most of my pain is) and she feels that I may have tore an intercostal muscle but wants me to have a bone scan 'just in case'. Of course, with all the manipulation, my LE has flared.
I hate the way LE can send me off the deep end and make me an ungrateful, whinny, pissed off, crazy lady!!!! GRRRRRRRRRRRRRRR..........
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Jo, hoping these new therapists are good, and consider bringing in the NLN position paper on treatment and reviewing with them how they will cover all the aspects of treatment:
http://www.lymphnet.org/lymphedemaFAQs/positionPapers.htm
We added some new info to the treatment page on stepupspeakout (thank you Jane!)
http://www.stepup-speakout.org/treatments_for_lymphedema.htm
I figure this way, you set the agenda, and let her know what you need her to do. And, Jo, they consider "significant" LE to be 2cm larger, and an inch is 2 cm, so the "good" news is that you more than qualify for insurance to cover this.
Kira
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Jo,
I used an OT who is Norton trained, to do my hand rehab after my fracture. She works on a lot of the patients where I work also. She was great, and I wasn't scared that some OT with no clue about LE would really screw up my hand.
I did teach her something: she tried to use some one pound weights for my wrists and the reps made my tennis elbow and LE act up immediately.
OT's are trained in functional stuff, and I liked how she thought and approached my hand rehab.
Kira
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JO-5 The LE therapist I saw was an OT ... Lana certified ... although we know just because they have the 'right' training doesn't necessarily make them good. I left her always less swollen.0
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Jo, my Therapist Jane is an OT, and I've always appreciated that because their training qualifies them to help us with adaptations to using our hands and arms in tasks we need to do. PTs are great for range-of-motion issues and such, but the OTs can really give you a boost with the day-to-day hassles of living with LE.
So glad you were able to get an early appointment, and I can't wait to hear your report!
Be well!
Binney0 -
Jo, The problem with partial wrapping is that fluid can go to the unwrapped area: I had this PT who told me not to wrap the pinkie--and I woke up with a swollen pinkie!
It does look like torture, but it really is not. I"m wrapped as I type this. I wrap every night--the major hassle for me is the time to put it on.
I think I learned after a couple of sessions with my LE therapist, and there were some frustating moments at home, and I don't let my husband help--because I need to feel how it feels on me.
My LE therapist showed me how to kneel at the side of the bed, and let the bed hold the roll of bandage so it doesn't fall and unravel. It can also be done with a table. For me, that's the key to a swift wrap--using the bed as I roll the bandage up my arm to hold it on the far side, and not let it get away from me.
My therapist doesn't believe in tight bandages--just roll them on smoothly with minimal tension and add more layers if needed.
Dexterity is an issue.
We have a coping page on stepupspeakout for getting through the day with a wrapped arm:
Personally, I wrap every night. I get wrapped after an MLD session with my LE therapist and wear it for a couple of hours during the day, twice a month. I've never had the "intensive" and worn wraps for days on end, but many of the women here have, and get through it.
If they didn't work so well, I would have more resentment toward them.
Kira
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Jo, the first time you're wrapped it does feel like you're not able to move but in fact you can, and it's great for the LE when you move your arm and fingers while wrapped -- helps pump the fluid out. It feels like a shock at first, but the more you do with your hand and arm the quicker you get used to it. I can do anything wrapped now, and my dexterity is fine, but the first couple of times it felt like a trap.
It's NOT a trap, though -- it's the way we get some freedom back.
We're all here for you!
Binney0 -
So I went to a breast cancer survivors event tonight, the program was actually quite worthwhile. But the reactions of the women I knew from support group who were seeing me in a sleeve really bugged me.
One woman I really like and respect insisted my LE sleeve was just temporary, and I wouldn't have to wear it forever. Another insisted she knew someone who used "holistic" methods to cure her LE and no longer wears a sleeve.
Again these are not random idiots, they are women I have known and looked up to since I was first diagnosed, and it's frustrating that they don't get it, not even a little bit. It's hard when even my support system is not that supportive.
I realize they are really afraid themselves, and feel bad seeing me this way.
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Cookie: we are their nightmare. So they need to deny it.
I had a pulmonologist neighbor tell me to try magnets....(And I did, but the miracle chi magnets kept violently sticking my hands together as I read a book and hurt my pinkies--hey, we all want this to be temporary...)
My parents came for a visit last year, and I discover that my mother called my younger sister--who is not at all supportive of me--to tell her how distressed she was to see me wrapped.
We distress them, and we distress the women on these boards--look at all the action on the "how many nodes" thread of women telling us that "They DIDN'T get LE, despite their ALND." A few times, someone brave has posted "Not yet...", but they keep posting.
I work in rad onc, many of our patients have LE--it's on the consent form and we measure arms, one of the radiation therapists has bc related LE, and yet everyone stares at my glove. Sorry to be a visible reminder.
Kira
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JO--You can stand the wrapping. I just finished 12 1/2 weeks of 24/7 wrapping and am now in a sleeve in daytime and wrapping at night. After the first few days I really got used to it and learned to adapt. I almost miss it. Luckily my therapists did not wrap me so tightly that I could not stand it. They used lots of layers. It feels good to see my arm under control so it is worth it. Hang in there. Becky
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I wear my sleeve off and on. It gets too tight, so I remove it for awhile and then put it back on. I have a gauntlet, not a glove, and my wrists seem to be the biggest area of irritation. My hand swells sometimes, but the biggest swelling is in my forearm, around the elbow. I do have truncal swelling that would be considered mild, but it makes any bra uncomfortable. I do the big wraps a couple of times a week.,
As for getting into a real LE therapist, I am on a waiting list and expect to not be seen till the end of summer. I have seen a couple of good OT's who showed me how to self massage, and I do it every night, and sometimes during the day. I do not skip a day. Best of luck Jo. I was told by my Rads onco that rads would increase chances of LE, and I had all of my nodes removed, as well. I was OK till I had a recurrence that was IBC and it spread to my arm. That did it...brought the LE on fast.Susan
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