Truncal lymphedema

Hi Lily, here is a good link to start with about how to deal with this. http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm 

Lily, hi, and welcome!

You really don't want to "wait and see" on this, because lymphedema is staged, just like cancer is, so if it's lymphedema you definitely want to deal with it as early as possible. Progression means hardening of the tissue and eventually not being able to get it reduced. It also means a much higher rate of serious infection (cellulitis), and treatiing it early means reducing that risk. Skin changes, loss of range of motion, and other serious issues can also result from untreated lymphedema.

Any doctor on your team can write you a referral for an evaluation by a well-qualified lymphedema therapist. Here's how to find one near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Treatment involves a gentle, special massage to remove accumulated fluid, directed exercises, just the right compression for your needs, as well as individualized tips for self-care to reduce any swelling and keep you comfortable. All good!

Let us know what you discover! Gentle hugs,
Binney

Hi, Jennie93...in my limited experience (meaning based only on my personal journey with truncal LE), it may be frustrating to wait, but it may be best to wait until an MLD therapist can show you the best pressure and technique for your situation. I can recommend mild compression wear; Target has a selection of camisoles in their lingere department that provide constant, but not uncomfortable compression. They have been as effective, more comfortable, and a quarter of the price of 'official' truncal compression garments. This more than anything has helped me feel like I'm doing something to help the situation even when my measurements don't go down.

OK, so, update, I have seen the LE therapist, and she did MLD twice, and showed me how to do it at home, and got me some "swell spots" to try (tucked into a snug bra), and it does seem to be helping some already. But I have a question. If I'm going to do both MLD and compression, which should I do first?

Thanks Carol, that makes sense. It's not an instant, visible difference or anything, but I think overall the swelling is definitely less. If I want to try one of those "Under Armor" shirts where would I find them? How do you know what size to order?

Jennie, you can find UnderArmour compression shirts at some sporting goods stores, like Dick's or Dunhams. It's best if you try the shirt on, and compare the fit of men's, women's, and boys, especially if you are small. The tighter the better, to the point you have to wiggle into it, but not to the point where the seam is cutting into your armpit. Many women wear them inside out to keep the seams from digging in.

If you can't find them locally, amazon probably sells them, and be sure to check the return policy, because there's some trial and error to getting the right fit. For reference, I wear a size 12 ladies' blouse, normal fit, and a size 8 pants (I'd say I'm a bit topheavy!). The men's size small UnderArmour shirt fits me perfectly. Be sure to get 'compression' fit, because they make a few different fit types. There are other brands, too--sensah is one that comes to mind, and Go Athletics, although their shirt is made of less compressive material than the others, so I find it gives limited compression help. The Go shirts are much less expensive than UA, however.

I've tried it all. Compression is about the only thing that helps. My LE is truncal and the problem with that is most things are for the arm. The pump has not helped me at all. Compression does help some, but right now I am very frustrated as my flare up days seem to be coming closer together. My LE starts where the sleeve stops, so long sleeve compression is about it for me.

bhd1 - the PT has me massage my body and I've found the water and soap combination makes it easier.

My LE is focus on my left ...so I begin with deep breathing like blowing bubbles.

Massage the abdomen left to right working down torso

Massage the hips...sticks up in reverse...cowgirl reverse pistol draw ha

Massage down the hips to groin

Massage the shoulders/neck counterclockwise

Massage the neck up to ears than reverse down neck and clockwise shoulders

Massage SND area to the back

Massage across the breast left to center of chest than under to side

Massage under arm down sides

Massage the back left to right

And then a final lite brush down the sides...

The touch is very soft...soapy hands are great.

Concept is to get everything open and moving and the get to the areas that need to be unclogged and rerouted...helps...

I am have it in pockets of extra skin the surgeon left. (He knew I was not having any kind of reconstruction!) I have a "dog ear" where my mastectomy scar starts in the middle of my chest, under my arm, and a big area that is on my side and back.  A nurse had me wearing ace bandages around me to try to get drainage down when I still had the drain tube. After I finely got the tube out the nurse and PA kept telling me I did not have truncal lymphedema. My nurse friend tried to convince them I did. They insisted it was just skin and my "new normal" that I needed to get use to. When my oncologist saw me she asked why I was not being treated for it! She referred me to a lymphedema  therapist. (Unfortunately, there is only one in my city.)  

The therapist does special massage, taught me exercises, and I am trying to get enough or the right kind of compression. She says all 3 are needed. She says once you have it it is a life long thing.  Her massage works good. I can see the difference when she is done, but the swelling comes right back over a few hours. She said the ace bandages  roll up and down to much, I got some tight sports bras that she thinks is better but it rolls to. The doctor gave me a prescription for a compression bra, but when I went to get it the fitter said that is not going to work because  there is nothing in the cup on that side and it would not be enough compression to but puffs in there. So she suggested wearing a "Swell Spot" under sports bras. The therapist agrees that is the only option to get compression in chest and on side. The problem is the sports bra rubs on my shoulder that is swollen and has arthritis.

Vaper, if you want some great community support in TN, you might PM beckysharp, who started a support group in western TN.  She and her group members have put a lot of work into bringing great resources and lots of education to their meetings.  If you're on the other side of the state, I think she has some networking that might help you, too.

Hi folks, reposting this on some threads, may be old news to some, but to good of info not to pass this on,particularly if scar tissue is a problem,Sassy

Bluebird144…NJJoined: Apr 2013Posts: 393

13 hours agoBluebird144 wrote:

Knitted Knockers Charities is a non-profit that exists to provide free patterns for knitters and crocheters to be able to make knockers and help mastectomy patients get freeKnitted Knockers made by volunteers.

I love my Knitted Knockers! They are light and soft and warm. Unlike my silicone prosthetic which is heavy and cold when first worn, then it later causes me to sweat.

I wear my knitted knockers inside a regular bra or tucked in the pocket of a mastectomy bra. They are beautiful, and a godsend to those of us with an uneven mastectomy scar.

Knitted knockers website:

http://www.knittedknockers.info/

Fall down seven times, stand up eight.

Surgery 09/09/2009 Prophylactic Ovary Removal (Both)Chemotherapy 02/06/2013 Adriamycin, Cytoxan, TaxolSurgery 07/19/2013 Mastectomy (Both); Lymph Node Removal: Sentinel Lymph Node Dissection, Axillary Lymph Node Dissection (Left); Reconstruction: DIEP flap (Both)Surgery 08/20/2013 Reconstruction (Right)Surgery 08/28/2013 Mastectomy (Right)Radiation Therapy 10/14/2013 3-D conformal external beam radiationSurgery 01/24/2014 Reconstruction: Tissue expander placement (Right)

I've been absent for awhile. This thread caught my eye, as I have truncal LE in addition to my rt arm.  I was faithful to my own MLD, as well as MLD appts for about 3 years until we moved.  Since the move, I've done my own MLD and have not found a therapist yet, but I'm doing well. I've always worn an UnderArmour shirt once size too small, with a glove, and have found that to be very effective for the truncal aspect.  No bra.  If I gently stretch with the shirt on, it seems to increase lymphatic flow.  This is just my own experience.  I'm 4 years out from BMX surgery, with a mild LE diagnosis almost immediately.  The first 2 years I thought I was going to go nuts, as flares had no rhyme or reason. There are still surprises, but I'm better at knowing my boundaries, which helps.  Just wanted to send along an encouragement.

I've just been diagnosed with truncal and mild upper arm LE.  I've been reading a lot of the threads and trying to figure out what garments to try!  I've been to one LE therapist. She is a massage therapist with LE certification, but she was not helpful as far as what type of compression garment to use. My old PT,, who is not LE certified, is going to check with someone that she went to school with, to see if she can help me. In the meantime,, I'm reading,,,,

*NEWS! I need your help!

Hi All,

I may post on a few threads… hope you will indulge me , but will seek replies on the new LE thread “ GARMENT for truncal”

There, I posted about a great top that love for truncal LE made by sassybax.com :

TORSO TRIM TT03: http://www.sassybax.com/search.php?search_query=TT03&x=0&y=0

They also make a bra with BC pts in mind

Celebrate Life bra : http://www.sassybax.com/search.php?search_query=celebrate+life&x=0&y=0

PLEASE go look at that thread when you get a minute.

The owner called me today and she is wonderful! She is very open to the *possibility* of selling these items as garments that we could buy with our health ins. NO PROMISES because she needs to know HOW to do this and what it would take. At this point, she and her husband run the business out of the home and if it requires too much work, they may not be able to take it on, BUT – she would be happy to!

Please post on the “garment thread” and/or PM me and tell me anything at all that you might know about how to accomplish this or who to get in touch with.

Many Thanks!
Laurie

but doctors seem to have never heard of ...

grrr!  I had a  simple  LX, NO radiation and only 2 nodes taken with SNB, I have  wrist, arm hand and truncal  LE.

You need to look for  a qualified LYMPHEDEMA therapist in your area.

Check out the SU SO website for LOTS of the best info out there and good luck!

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