GRRRRRRRRR I HATE LE..........
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I would appreciate some expertise from this group. I have had some minimal swelling in the breast following radiation, which ended about 7 months ago. Am seeing a good (I think) LE therapist and it is definitely going down. She has recommended that I get a compression bra for times when I might expect a flare (running, high heat, flying). Given my size (small busted), it seems my two best choices are the Bellisse or Wearease compression vest. Does anyone have a recommendation between these two brands? Also, does anyone have experience with wearing the compression bras as more of a preventative tool?
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Finding - I have mild truncal & breast LE. I wear the WearEase Sydney compression bra constantly - 24/7. I find it's bearable most of the time in the Houston heat. I wear it to exercise, in the gym, and even in the pool for water aerobics. My LEPT thought it was excellent because it comes up high under the arms and the upper back. I have not tried their compression vest. I do know their customer service and return policies are excellent. They are very helpful on the phone. https://www.wearease.com/collections/upper-body/products/sydney-bra?variant=8348615180331
As a preventative, when I fly or feel I'm at extra risk, I wear Belisse compression. It doesn't seem to have a Model #, but is has a zipper & hooks in the front, hooks in the back (all to adjust to the rib cage & chest correctly) and velcro on the straps. I'm pretty sure it's this one: https://www.lymphedemaproducts.com/products/bellisse-bra.html I leave this bra as well as sleeves & gauntlets on for at least one hour after the plane lands, then change back to my Sydney.
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Can sleep lines be a sign of lymphedema? Woke up with a bunch of wrinkles on the inside of my forearm. It's been 2 hours and they are still there. I seem to recall seeing them yesterday evening, before I went to bed, but I didn't think much of them. The arm doesn't looks swollen.
Yesterday I did a little more arms on my elliptical than I usually do. I really didn't have LE before, just cording.
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Joanne,
I have some on my other arm too, but a lot fainter. Then again, I had lymph nodes removed on both sides, so theoretically I'm at risk on both sides. In reality, only my right arm (the one that was completely covered in lines and wrinkles this morning) has given me any trouble at all, and only a while ago - 3-4 months after surgery I had cording and a feeling of tingling/fullness in it. I worked with LE specialist and she determined I didn't have any swelling. I'm no longer able to feel the cord, but my PT (who is not LE specialist per se, but works with BC survivors and is knowledgeable in LE matters) says she can still find it. I've not experienced the unpleasant sensations since this time last year, and I've been flying and exercising without a sleeve (with LE specialist blessing).
3 hours later the wrinkles and lines are finally gone, on both arms. I will run this by my PT when I see her again next week. I no longer see LE specialist on a regular basis, but I can schedule an appointment, if I need to. Thank you for the advice to do the light sweep. I remembered some LE massage moves I was shown last year, and not sure if they helped, but the arm looks fine now. Always something to worry about, ugh.
For your mosquito bite - I'm fortunate to not have huge issues from bites or scratches. I would put some antibiotic ointment if you want to be super careful about your bite, and try my darnest not to scratch the area.
I had a skin infection from an ingrown hair (sorry for gross details) 3 weeks after my surgery (the joys of having neoadjuvant chemo, and having my body hair regrow during my mastectomy recovery). One of the lymph nodes enlarged quite a bit, and I was scared out of my mind that this was cancer that somehow got missed. It took weeks for the node to go down, but it did, and my doctors were telling me that it was just doing its job, and was a sign that my lymphatics is not completely damaged. I only had 4 nodes removed on that side.
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FarAway - i agree - flying is definitely a NO NO without sleeves AND gloves, or at least gauntlets. Most docs don't even know how to catch or diagnose LE, and will do just what Jo says "let it go". So I think that information is bogus. I also agree, you should see the LEPT ASAP to catch it early. That person should have your base line measurements to compare. Confirm his or her training. I'm putting this extremely informative link below in case you haven't already seen it.
Oh no JO - how in the world could you have another bite? Seems like everything just finds you irresistible. Sorry I've been fortunate in not having bites on my arms, so no feedback for you. Please keep us updated.
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Minus Two- I ordered 2 Sydney bras when they were on sale..LOVING them!! I'm "busty" and petite which makes it so difficult to get bra straps that are short enough. The straps are always tp long and usually no way to make them any shorter.
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Varga - so glad you like them. I recently discovered that instead of using the original 'lingerie elastic' on the edges, they are now doing an outside seam with zig-zag stitch. Apparently they had complaints about the edges bothering sensitive skin. This new 'design' will not work as well for me for the reason you're stating - the shoulder 'straps' aren't tight enough. I'm working with the company to see if I can get the original design.
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Well, I just went to my first PT eval for lymphedema. I am just now developing lympedema after 8 years. I have swelling in my clavical area, breast, back, underarm and arm. I think it's not too bad yet. The greatest difference in my arm is 3 cm. The therapist says I should wear a sleeve all day and a different night time sleeve.
I have to admit, I'm kind of nervous about suddenly wearing a sleeve everyday to work. I'm a teacher and I've never talked a lot about my diagnosis at work. I know I just need to get over it and it will be fine. Has anyone else felt this way?
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Mammalou- my BC is not public and I struggle to hide my compression sleeve! I totally understand! My parents do not even know that I had BC, went through 5 weeks of radiation and have LE...
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mammalou, I'm so sorry for this recent diagnosis! You're not alone in feeling a you do! Here's an article that might help:
http://www.stepup-speakout.org/patoconnorcopng.htm
I've had LE for 15 years, and much of the time I don't even think anymore about the "embarrassment" of these stupid garments. But every so often--usually when I least expect it--I still get a sweeping sense of grief about it all. I do think that's normal, even if it's also sad and uncomfortable. But that's why we're all here--to cheer, comfort and encourage one another.
It gets better, honest!
Gentle hugs,
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Explaining why you wear the sleeve can be very educational to the students, you just to say you were sick and it damaged your lymph nodes, you are better now, but you need to wear this sleeve to help your arm..
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so let me get this straight... you don’t get away with Lymphedema...? Great something to look forward for my surgery. Even if Ia lumpectomy with à lymph node biopsy? And you are never cured from it? Super!
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Thank you ladies! I was thinking that I was being silly feeling so down about this and worried about going public. It feels good to know I’m not alone. Binny4 thanks for the link. I’ve been reading it and plan on doing more as I can.
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mammalouI chose to buy some that have patterns or designs on them. I thought if I'm going to have to wear this from time to time, people will notice even if it's the nude to me color.
I've told people it's to help with some side effects and complications after some surgery, and no one asks for more information. A few--very few--people knew what it was on sight.
Cute story: we were flying home a couple of weeks ago and I had on the one with abstract flowers (gauntlet matches it too), I was in the aisle seat with my sleeved arm on the aisle side. A little girl, maybe 6, stopped and exclaimed "OH! That's so pretty!" and started stroking my arm. She asked about it, I told her it was to help after surgery and that it was in two pieces. I sort of pulled up the gauntlet and she very gently and carefully pulled it into place, gave my arm one last stroke and walked back to her seat.
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Aww, Edj3, that really is a sweet story!
Mammalou, I am also a teacher and just really wanted to keep my bc diagnosis hidden from the students as much as possible. I teach high school and really didn't want to bring the attention of teenage boys to my breasts lol! Anyway, students eventually did find out and couldn't have been more kind or thoughtful. If anyone asks about your sleeve, I agree with what LindaKR said about it being a teachable moment. You wouldn't have to specify it was breast cancer necessarily. However, if students learn you had cancer and see you are a survivor, that could give so much hope to any who have a parent, sibling, etc. who is diagnosed and help ease the fear they might have, not to mention how it could help any students in your room who feel self-conscious for some reason of their own.Plus all your students will see their teacher as one brave, tough lady to look up to and one they better not mess with!
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I stopped wearing garments over 10 years ago and it got no worse. I had lymphedema immediately after my 2003 IDC lumpectomy due to removal of entire fat pad with 24 nodes. My left arm is significantly larger than my right and I have swelling on my left side as well. I had multiple therapists, each time with weeks of therapy. I wore garments that were custom made in Germany for years until I couldn't get them to fit correctly. I finally gave them up and I have never had an infection or complications, even after my second bout with BC this past January. I had a mastectomy with DIEP reconstruction. It is a bit more swollen since that surgery but only my doctor and I notice the difference.
I also had a complete reverse shoulder replacement in the same side and they wrapped it during surgery and for a few days (I don't remember exactly how long) and it didn't make my lymphedema worse.
I don't know if I am the norm or just lucky, but so far so good. I did go back for therapy this summer, but learned that Medicare won't pay for garments and even though I have a company Medicare Advantage plan through my husband's retirement benefits, if Medicare doesn't approve it, neither will my insurance. No point in doing therapy without wrapping!
So I am back to square one. I must say, I was super tired of people asking me about the garments! I now wear long sleeves in public year round to hide it, although it may not hide it as much as I think it does, it allows me to feel less self conscience so it works for me. For me the less that reminds me of BC the better!
Again, I wouldn't encourage anyone not to use garments, but if it doesn't work out for you, at least you know of one person who didn't find it got any worse not wearing garments or doing therapy.
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Thank you Mavericksmom. That is good info to hear and consider. Maybe it can stay stable and tolerable.0
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I am someone who stays in compression 24/7 (with the exception of my 2 naked nights 😜) uses my flexitouch pump at least 5-6 days a week and try to stay in top of the MLD. I'm not very good at it but I try. I am very active and have a 110 pound child that walks only with assistance. I have to be aware of the LE all the time. It's just life now....
I also wore long sleeves most of the summer to hide my sleeve. I have lots of pretty ones that I wear if I'm not going to be around my parents or anyone with the company I contract with. When I wear short sleeves I rarely have anyone ask about the sleeve. Which gives me a false sense of security. I wonder of they notice and no ok ne says anything!
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I am someone who stays in compression 24/7 (with the exception of my 2 naked nights 😜) uses my flexitouch pump at least 5-6 days a week and try to stay in top of the MLD. I'm not very good at it but I try. I am very active and have a 110 pound child that walks only with assistance. I have to be aware of the LE all the time. It's just life now....
I also wore long sleeves most of the summer to hide my sleeve. I have lots of pretty ones that I wear if I'm not going to be around my parents or anyone with the company I contract with. When I wear short sleeves I rarely have anyone ask about the sleeve. Which gives me a false sense of security. I wonder of they notice and no ok ne says anything!
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edj3- look at my new sleeve
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Oh that's pretty!
Here's the one I wore today:
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Edj3- that's beautiful!! Is it a Lymphedivas? I check the website everyday for the discount seconds. Ya never know what you will find! The sleeves aren't compromised in structure it's just a dye lot issue or possibly a slip in the pattern. So far all of mine have been unnoticeable! And they are $32.50- $44.00 a nice saving!
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No, it's Juzo. I liked the Lympediva ones a lot but they don't come in the size I need (super small, long length). I was bummed
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Juzo is the one in should be wearing with all the lifting I do. I only wear the lymphedivas when I'm not pushing my girl or lifting her. 😜
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I like your sleeve! I am going to have to get more brave. I’ve contemplated wearing a sleeve on each arm so it just looks like a long sleeve shirt. Lol!
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I just received my sleeve in the mail. How tight should this be? Is it ok to see indentions where the band is
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Lou, the sleeve should be a snug fit.
My Juzo sleeve has a wristband construction. It sometimes leaves a slight depression in the skin there. My LympheDIVA sleeve has no wristband, so there is not a depression.
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But ... it's a good questions. I don't think a sleeve should leave an indentation ?????
My Juzos have a band at the top & none at the wrist. Occasionally I'll have a depression on my thumb from the gauntlets if I use my hand too much.
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I wore my nighttime garment for the first time last night. It was difficult to get on! I woke up with what looked like protruding veins running up and down my arm. Is that how it should look
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Lou, I've not experienced something like you describe. My nighttime garment is snug, but not nearly as snug as a daytime sleeve.
Perhaps snap a picture or two and send to your LE specialist for his/her advice.
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