Good bras for truncal lymphedema

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jemikni03
jemikni03 Member Posts: 29
edited June 2014 in Lymphedema

Hi all, I have recently begun treatment for my lymphedema.  My therapist told me today that I need a different kind of bra.  Right now she has I'm using swell spots in the bra I have, but will be shopping for a new one asap.  Any suggestions?

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  • yellowrose
    yellowrose Member Posts: 886
    edited April 2009

    Check out this site put together by several of our sisters.  It has alot of great info and links. 

    http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

    Bella Jane can customize your bra if you wear an unusual cup/band size. 

    Right now I'm looking at purchasing a short-sleeve Bolero by Design Veronique.  It looks great, just not sure whether it will do the trick yet. 

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  • jemikni03
    jemikni03 Member Posts: 29
    edited December 2008

    Thanks, heading to the site right now.

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  • KPolasek
    KPolasek Member Posts: 184
    edited January 2009

    I am waiting on my LE therapist to get back from her holiday vacation.  When she does, she and a local medical supply company are going to order a Juzo brand compression bra.  My therapist had one that the Juzo company sent her and I tried it on, unfortunately it was 2 sizes too small.  In spite of that,  it was very comforable.  I liked the material it was made out of.  The downfall is that you will probably have to have someone to help you put it on.  Whatever you order, make sure that what you order can be returned if you don't like it.

    Blessings,

    Kay

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  • Binney4
    Binney4 Member Posts: 8,609
    edited January 2009

    Kay, I had a couple of Juzo compression bras at one point. And I agree that the fabric is lovely and they're well made. But if you value your independence they may not be for you - definitely takes someone patient to help get you dressed. Which is not to say you shouldn't get them. We're all different in what works for us, that's for sure! (And a good thing, too! Laughing) Still, there are a lot of options out there, so do at least look over the options on the web page YellowRose posted above before you decide. (I just got a Wearease compression bra and I like it a lot - comfortable, nice fabric, very adjustable.)

    JMHO!
    Binney

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  • KPolasek
    KPolasek Member Posts: 184
    edited January 2009

    Binney,

    I have been looking and looking and am so confused about what to get.  The wearese looks good but I had hoped to order it via internet .... I am going to try to call them tomorrow.  Plus, they have no cost posted. 

    The Anita bra looks good but I have no clue how to order one. 

    Any other suggestions?

    Blessings,

    Kay

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  • Binney4
    Binney4 Member Posts: 8,609
    edited January 2009

    Hi, Kay,

    If you order on-line will your insurance cover it? With my insurance I have to go to one of their approved suppliers in order to be covered.

    The Anita compression bra can be bought on-line. Here are two sites:

    http://www.womanspersonalhealth.com/products/692/Anita-1094-Compression-Surgical-Bra.htm

    http://www.thepinkbra.com/anita1094.html

    Amazon has them for close to half the price of the other sites, but in a limited range of sizes:

    http://www.amazon.com/Anita-Compression-Bra-Style-1094/dp/B0007XBW02

    And this site offers both the Anita and Wearease, but I'm not familiar with the site so don't know how they are to deal with:

    http://www.nextag.com/compression-bra/search-html

    Why not ask your therapist to have the local medical supply place order one of each for you to try? I know Wearease let my fitter return the ones that didn't fit at no charge to her, and it's even possible your medical supplier already has an account with Anita since they make other mastectomy bras too, so no problem there. I've suggested several new products to my fitter (Wearease bras, Silique Comfort-Lite prostheses, Gottfried sleeves and gloves) and she's as pleased as can be to know about good products that are out there. So far all those companies have been willing to work with her. And she's been able to use them for her other customers too, so I feel like they're getting a wider selection as well. The way I figure is, even if my insurance is paying, these are pricey items, so I should be able to get what I want, not just the one brand a fitter may already be selling. (The exception to this seems to be the boutique-type places, which have real limits on what they're willing to stock.) But it's worth a try, anyway.

    Keep us posted!Smile
    Binney

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  • ter417
    ter417 Member Posts: 13
    edited January 2009

    Binney, I'm new to this site , first time on and was reading all of your comments on LE. I had a lumpectomy on 12/12/08 and thought I was doing fine until about day 5 when the pain started. After being on line at another site I realized I was experincing nerve pain from SNB.  It still hurts underarm and around shoulderblade area as well as my breast.  Had to go back to Doc 12/31 for swelling of breast. Doc said it was fluid build-up from surgery and drained it with a needle taking out about 8-10oz. of fluid.  It feels better now but could this have been LE or is this one and the same problem?  I haven't read anything about anyone else having this done to relieve pain.  I'm going to surgery again on 1/9/09 to get clear margins.  My diagnosis is stage 0 DCIS carcinoma high grade. Treatment plan  lompectomy followed with 33 radiation treatments.  I scares me to read of all the problems some of these courageous ladies have endured, God bless them all.  My Doc is aware of LE problems, and said if I noticed more he would get me to a specialist.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited January 2009

    Hi, ter, and welcome!

    So glad you have a treatment plan in place -- it's still scary, but it sure does help to know what steps you'll be taking! The swelling that your doctor was able to drain is fairly common after our surgeries. It's called a seroma, and it's a pocket of fluid, a sort of "pond" that's all collected in one spot. If it's not painful doctors usually just leave it alone for the body to re-absorb. I had painful seromas after my second mastectomy that had to be drained several times. Hopefully Kira will be along shortly - she's a seroma expert, unfortunatelyUndecided.

    Lymphedma is different -- it's fluid that is NOT in a handy little pond. It's all over around the cells in what's called the "interstitial tissue." Basically that means in whatever wee spots it can get. It can't be drained with a needle because it's not all collected in one place. So getting the lymph fluid out of the tissue in lymphedema requires stimulating the remaining sluggish nodes and vessels so they'll get back to the work they're designed to do. That takes a very gentle directional massage that moves the fluid in the right direction in small, slow increments. And using compression bandages and garments to help keep the pressure on and the fluid moving.

    So a seroma is usually easier to manage. But the problem is that it's been connected with later development of lymphedema, so you might want to be more aggressive about getting early lymphedema care. Ask your doctor (and good for him for knowing about lymphedema!Cool) for a referral to a well-trained lymphedema therapist now -- for evaluation, baseline measurements, learning prophylactic massage, tips for reducing your risk, and fitting for any garments you need to help keep it at bay. Here's a page from the StepUp-SpeakOut site for finding qualifed therapists near you:

    http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

    Hope that helps, and prayers for a smooth and entirely successful surgery!Smile

    Gentle hugs,
    Binney

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  • ter417
    ter417 Member Posts: 13
    edited January 2009

    Thanks Binney for your reply. I do thing I have a great doctorand lucky to have not had to search for another during all of this. I know I have been in pain this past month but I feel fortunate that it hasn't been as bad as it could have been .   Some of these ladie have really been throu a lot .  I can't even imagine how they have held up through their pain and other problems they have had to deal with.My family has been great plus I'm fortunate to beable to be on dissability from work with no pressure to come back at this time. My job is pretty physical so there is no way I could do it.I know I will get alot of help from this site in the future and will in turn help anyone I can.  I went to the site you recommended and copied some info for my folder incase I need i in the future.  Thanks again and HUGS TO ALL OF YOU OUT THERE ---Terri

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  • ter417
    ter417 Member Posts: 13
    edited January 2009

    Just me again.  I really need to check my typing before sending these notes. LOL Can you tell I'm not used to being on the computer?  Maybe now I'll have time and will gets lots of practice.  May need help with spelling too.. bear with me, laugh with me and lets have some fun!!!! Terri

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  • Binney4
    Binney4 Member Posts: 8,609
    edited January 2009

    Terri, yes! You're an encouragement, for sure.

    Speaking of, uh, fun . . . I'm just ready to go finish up my exercise DVD that I started this morning and quit when I got busy. It is fun, actually (it's the Lebed Method DVD -- lots of stretches and fun music, and Sherry Lebed is a nut so I always end up laughing). It's just hard to squeeze it in, is all. Kira challenged me to get back to exercising after the Holiday rush, and it feels so good to be active that way. (Well, it feels very virtuous too!Innocent) Gets the ol' lymph flowin'!

    Any other takers on the "exercise every day" challenge? You can sign up here and we'll all happily nag each other.Kiss

    Onward!
    Binney

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  • KPolasek
    KPolasek Member Posts: 184
    edited January 2009

    Just call me NAG!

     I received my DVD - the Lebed Method .... barely had time to look at it but I am commited to trying it ..... AND ..... I NEED TO LOSE WEIGHT!!!!!!!!!  Uuuugh!

    Nag me .... please.

    Blessings,

    Kay

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  • JulieC
    JulieC Member Posts: 324
    edited January 2009

    Binney,

    Would this DVD help me?  I finished radiation to my right side in Oct.  I don't have LE, but still have pain down my side, in my arm pit from the SNB and in the breast itself.  I know I need to get moving somehow, but just don't know where to start.

    Thanks so much for your help,

    Julie

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  • Binney4
    Binney4 Member Posts: 8,609
    edited January 2009

    Hi, Julie,

    This is such a gentle exercise program. She emphasizes moving slowly and "no pain!" You progress at your own rate, doing only what you can at first and getting into more as you repeat it over time. So, yes, I'd bet it'd help a lot. And it's casual, friendly, funky. What's not to like?!Laughing We have another thread here called "THE 2009 EXERCISE CHALLENGE." If you decide you'd like to give it a try with us, do come join us there and we'll nag one another along!

    Be well!
    Binney

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  • KPolasek
    KPolasek Member Posts: 184
    edited January 2009

    Julie,

    I didn't do any kind of exercise after my surgery 11/1/07, chemo or radiation.  No one warned me that I could LE even though I only had one node taken.  LE can occur right away or years later.  My LE is in my chest wall/boob, under my arm ..... it progressively got worse over time and figured out on my own to check into lymphedema and Binney is the one who helped me understand that I indeed could have it only in my chest wall/boob.  I always thought of it as an arm issue.  Oh ... and by the way .... my elbow began to hurt after rads ...... and then my shoulder .... I have lost range of motion in that shoulder.  Exercise whether you have problems or not ... that is what I learned.   Sorry ... if I came on too strong ... I just know what misery I may have avoided if I had exercised and found out about lymphedema sooner ..,... I complained to my onc, primary care phy, surgeon and so forth ..... they all said it is just scar tissue .... yeah, in my case A LOT OF IT ... they were always surprised but had no answers. 

    Sorry about the venting tonight ..... I am missing my LE treatment and will for the next 7-10 days because I have a sinus/ear infection ... and my boob is feeling full ......and painful.  Popping the drugs.

    Blessings,

    Kay

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