Truncal lymphodema question

Jeanne, I think lots of us experience lymphedema flares -- extra swelling, or more noticeable swelling--when we are sick with something.  Truncal LE is not surprising after losing even a few lymph nodes, although from your post it sounds like you're feeling/seeing swelling on the non-SNB side?  Even so--the prophy mx means losing at least one node in the breast itself, and you get scar tissue that interrupts lymph flow. So it could well be truncal LE even on your prophy side. 

Truncal is very hard to measure, and OF COURSE it's never there when we visit our docs and nurses!  Achiness, a heavy feeling, a tingling feeling, and for some women, pain are signals that it could be LE.  Can you ask for another evaluation? 

In the meantime, you can experiment with shaper camisoles and Under Armour compression shirts.  I did not need chemo so I don't know where the port is placed--so cannot imagine if that's an obstacle to wearing a shaper cami or compression shirt. But many of us find that wearing a compression garment helps tremendously with mild truncal LE.  Most wear the shirts inside out so the seams don't irritate.

Keep us posted!

Carol

Jeanne,

I can feel your pain and frustration. I'm sorry you are dealing with swelling and pain. Truncal is so hard as it moves around and yes, it hurts! Finding the right compression for the trunk seems to be a lot of trial and error -just like everything else with LE. You may want to check out step up speak out website that was created by a few of the amazing women here. There is a lot of info on compression garments including ideas for various camisoles, shapers and bras. I've had to mix, match and try out a few and sone days it works and some days it doesn't. But, you just keep trying .....and come here to vent......and eat chocolate!! No ace bandaging though. It's a big no no with LE. Does not offer the gradual gradient pressure that's needed and could make it worse.



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



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

I use a slimmer by wearease and recommend it.  I usually price shop online to get the best price, since I don't have insurance.  Some insurance policies would cover it.  Anyway, I just ordered a new one last week and paid about $45.  I also have an underarmour shirt which feels wonderful, but I ordered too large a size, and it doesn't provide enough compression.  Bras are out for me, except for special occasions, because the band blocks lymph flow and puts me in pain.

Please find a new therapist - step up speak out has a list.  Mine wasn't on the list, but she was great anyway, and a huge encouragement, greatly lessening my pain, and giving me more control over my body when things were really scary. I don't think I was officially "diagnosed" either, but I was treated, and that made a huge difference.

Jeanne, How super frustrating for you! My bilateral mx was entirely prophy, and I was talked into an SNB on one side that I very much regret, for the exact reasons you mentioned. My original diagnostic med center found nothing warranting SNB, but when I changed to another, big-city hospital to get the recon I wanted, that breast surgeon's practice insisted there was a possibility something sinister was not visible on my supposedly poor quality images, and that meant either start over with new images and biopsies, or do SNB. I asked about LE risk and was told it was only 1-3%, so I took the path of least resistance.  So sorry now!  Anyway, I feel for you!

It takes way too long to get things rolling to find a better therapist, so in the meantime, I hope you will try a shaper or an Under Armour shirt.  It's not so comfortable putting these things on and off in a dressing room, but worth the effort if you find one that helps.  You'll find Wearese in department stores, and even the Target brands are pretty good.  Look for a cami that has pretty high armholes, not cut so deep that they don't cover areas that I'll bet are giving you problems.  Also, the wider the straps the better, because thin straps can put too much pressure on a small space and interrupt the lymph.  If you can find only thin strapped camis, see if you can find a little silicone strap carrier. They come in a set of two and are designed to spread the strap pressure out. 

I am happiest in the Under Armour 'compression-fit' shirt, which I can find in several sporting goods stores (Dunhams and Dicks--I'm in Michigan). Where I find them, the mens and women's shirts are near each other, and I grab sizes in both mens and womens.  If you are tiny, boys' extra large might work well.  Try them on, inside out, and see if you can find a size that's too small to the point of being compressive, but not to the point where the seams at the armholes are so constrictive they irritate or pinch. It's trial and error, for sure, but it feels so good when you get one that works and wear it for a while!  Watch out for the women's short-sleeve UA shirts, because the sleeves are cut very high and several of us have mentioned that they feel like they cut into the tender area under the armpit.  I wear women's long sleeve, but men's short sleeve UA.

Manual lymph drainage will help so much, it's criminal your PT denies you the opportunity to have it and learn to do it yourself. Even if--big, big if--your swelling is not LE but some late post-op swelling, MLD still helps bring it down!  There is just no reason for that PT to deny your symptoms. 

Best of luck in getting some quality help, pronto.

Carol

question?  i'm to wear cotton next to the skin for now.  suggestions for a compression bra garment that isn't Expand-A-Band Traditional Binder?  i really detest how the velcro band bunches up during the day and has to constantly be adjusted.