What does truncal lymphedema feel like?

InGod'shands, you've pretty well described what truncal lymphedema feels like. Since the arm sleeve seems to offer some relief, you might want to try a compression bra or cami and see if that eases the discomfort in your trunk. I use a WearEase Slimmer cami, but there are other options as well (Spanx, for one--and hopefully others will be along with their suggestions).

It's difficult to see truncal swelling, partly because it can be diffuse, and partly because our "geography" has changed so much from treatment. One thing to check would be if your bra bands and straps leave marks on that side of your body when you take it off. There's more information about truncal lymphedema here:

Please do keep us posted and let us know how we can help.

Gentle hugs,
Binney

ingodshands:  Trying looking at your back in the mirror,, especially after you take off your bra, if you wear one.  Does the ALND side look bigger,, more swollen,, compared to the other side?  That may be one way to tell. It seems to be hard for most health care professionals to diagnose truncal LE.  With an arm, it is much easier to do measurements and compare to the other arm. Not so easy with truncal.  And Binney's suggestion about looking for marks from your bra is another good idea.

I use Breast Binders from EAB Medical. Compression bras are not easy for me due to some shoulder issues. I do sometimes wear WearEAse compression bra.

I think I first really noticed that I was having an issue when I noticed that wearing a MX bra with prosthetic made the area feel better by putting pressure on the area. (this is not true for everyone)   It was giving me some compression which made me feel better.

I hope that you can find another therapist,,, trained in LE therapy who can help you.

ingodshands. Hi and welcome. I totally validate your feelings and we all know the frustration you are feeling. You will have good days and bad days. The last few days I just want to leave my glove off and feel free but the little voice in the background says to put it on so I do. I know if I dont' "follow the LE rules" that LE will rule me.Still once in a while we do become rebellious and that is so normal dealing with this beast. Stick with us because I find that if we group together we tend to manage our le better.

My truncal feels" full like" and I have a feeling of a rubbery boiled egg at the back of my pit. I know my limits and when things feel to full thats when I wear my compression tees/cami to bed with a swell spot (channeled foam that moves lymph) and of course during the day compressin cami. No tight band band allowed! I try to do more exercise when I have a flare because it seems to take the fluid out for me. I find if I saw my arms back in forth while I walk and move my shoulder blades while sawing it takes the full feeling away,

Do post and we will work thru your le problems.

I had a lumpectomy and only three modes removed and my breast was even with the untreated side when I healed from surgery. I had rads up the wazoo due to my stage 3, with an armpit lit up at the time of my diagnosis and also one affected node behind my breastbone that was not feasible for removal.

After flying back and forth to Hawaii a months after rads ended I noticed my breast swelling had increased. I then had to help lift my 8yo son and tweaked something and my armpit swelled up.

My regular massage therapist shares office space with someone who does lymphatic massage (I'll refer to her as my LT for lymphatic therapist) so I saw her and also my physical therapist and they have been helping me figure out this post treatment maze.

My LT, in addition to doing manual drainage on me is helping teach me self-care including how and where my body is able to drain the excess fluid with my help. Having that mapped out specific for my body is invaluable.

The rads muscle damage and resulting restriction triggered my old whiplash injuries (1987, 2000) in the past two weeks and that was impeding drainage such that my left arm was swollen some in back. Understanding how other scar tissue in my body affects the lymphatic flow is also so helpful as then I know what needs to be worked on.

The stagnant protein-rich lymph is what will eventually lead to fibrosis in the affected area, also fatty deposits, and contributes to atrophy. Having a well-informed maintenance plan and support team is what hopefully will get my body the distance. At age 44 I've still got a lot of life to live yet

Hangers are individually managed but have regional control. There is a great one nearby and another one where I had to tell the person what to order and what size. Huge range of experience from one to the next.

I went there for short stockings and the lady tried to convince me the S stood for short when it was small.

I ordered the Amoena Patricia compression bra. It was SSS. Was great the first 2 weeks when I had a seroma. Was sort of Ok the 2nd month when I filed it in with felt pads to put pressure on the spots. Now it's too loose at the top to do any good. If the swelling was mid trunk it might be helpful, but mine is under the arm and where people flub out of their bra in front of the armpit. Also using a Genie cami or a sport bra. If anyone wants to try a 36 B/C. Patricia I will pass it I exchange for the postage

I am going to join this group. I have mild truncal LE under the arm and around towards the back. It is not really noticeable to see, but I can feel it. Sometimes very slight fullness in the upper arm as well. I have a sleeve, but now think I need a compression bra too. I have looked online but all the ones I am finding are for post MX and don't seem designed for everyday wear long term. Any suggestions? I have tried the Wearease compression tank, but their smallest size doesn't really give me much compression. I am also waiting for shipment of a couple sizes on Nike compression t-shirts to see if they will help. I have tried Spanx and other compression camis, but they are too tight in the abdomen and don't really give compression in the upper back area where I need it. I am scheduled to fly in about a month and feel like I really need to find something that works before then. Thanks in advance!

Adding to the pick, this bra is like a tank http://www.titlenine.com/product/313801.do?sortby=ourPicksAscend&refType=&from=fn#.VQBj5rHD-Uk (70.00) and I like this one called a compression sports bra http://athleta.gap.com/browse/product.do?pid=438484042&vid=1&locale=en_US&kwid=1&sem=false&sdReferer=http%3A%2F%2Fwww.athleta.com%2Fproducts%2Fsports-bras.jsp (only 50.00) but I haven't ordered that one yet. There are only so many bras I can buy in 1 month, maybe next month.

I'm still happy with the Genie Slimming Cami, I ordered a size smaller and can actually wear it without a bra underneath it for a not so bouncy day ( no driving). I'm washing it with my regular laundry and it has accidentally gone through a dryer cycle. After 2 months it's still like new.

I also tried the WearEase compression bra. Useless for someone with LE in the breast, I can't even figure out what it's for. The only place it was compressing was the bottom band and it actually hurt. I bounced with every movement.

I haven't tried binders yet, I don't know if I can. The word binder sounds like a midieval tourture device.

Thanks ladies. Some of these I know won't work because I need full back compression and the bras that cut in, like sports bras, cut right across where I need the compression. Likewise with the breast binders. I will look into the genie cami's and the compression bras.

bump

Chloesmom: hugs! It's hard to know what we do that sets off LE. It could be anything. Glad that you recognized it quickly and have been doing MLD. How is it now?