Lymphadema

weemuse

I was just diagnosed with lymphadema of both the arm and the breast. There's lots of info out there for the former kind, and zip on the latter. Anyone here have lymphadema of the breast?

Spamee

Hi Weemuse,
Im sorry to hear this.
I have stage O arm LE & Stage 1 Truncal LE.
Yes, unfortunately there is not much info on trunk LE, I have been strugling with it since Last spring...Didnt realize that that was what was the cause on my pain until July. I have not found a good LE Therapist.
I am doing my care on my own : (
I have been wearing A Bra or Compression garment 24/7 since August...it has helped some. But not enough. I still have too much pain.
if you look at breastcancer.org - on their forum...They have a topic for Lymphedema...There are some very helpful ladies there...They know more then alot of the Drs. I highly recommend you take a look & ask questions there : )

Spamee

here is another site with good info:
http://www.stepup-speakout.org/

And this person on Facebook:
https://www.facebook.com/LymphedemaGuru?ref=ts&fref=ts

weemuse

You too! Sorry to hear that! Do you wear a certain type of compression bra, like one of those post-surgery ones? My pain is on my side, rib/scapula area, and into the outside breast area. My regular bra leaves deep "grooves" in the skin when I take it off.

Spamee

I tied on several of the Compression bras at the Sleeve place. I did not like any of them. the bras I found on my own I prefer. One is from Kohls...its a Bali.
http://www.kohls.com/product/prd-1219923/bali-comfort-revolution-comfort-u-design-full-figure-bra-with-smart-sizes-3488.jsp
This is the one I sleep in.

This is the one I wear daily:
http://www.kohls.com/product/prd-147215/champion-double-dry-distance-sports-bra-6209.jsp
It does have underwire...Many say that you shouldnt wear that. I still find this works best & is the most comfortible...I have tried about 15 other sports bras & they just sit in my drawer now.
Maidenform has some nice Camis that are ok too. They dont seem to give me enough compression on my sides....that is where I have alot of my pain too. While these bras still leave marks on my skin...They are not nearly as deep as the rest of my bras...especially the nice pretty bras : )

Spamee

Oh, Also deep diaphramic breathing is very helpful. breath in through your nose & out your mouth...Your tummy should rise not your chest...Do this as often as you can during the day 5-15 times...it seems like it wouldnt do anything...But it does help & it is something you can do now on your own & you cant do it worng or make things worse

weemuse

Oh my gosh, thank you so much!!!! Everything you've provided in these posts will be a HUGE help! I'm going to do some online shopping today and start to take control of this thing. HUG!

Spamee

You're welcome.
Im Glad to be of help!
Oh & that Champion Bra looks very good under clothes...doesnt flatten you like a regular sports bra.
I still encourage you to check out BCO- breastcancer.org & read through their lymphedema threads.
You do not have to join to read.
They do talk about other Camis, etc & how they have worked for them...Lots of sleeve talk there too. precautions you should take...Very good info there & very helpful ladies.

Gorger

I had my Yoga teacher show me how to drain the lymphadema of my breast. It's hard to describe, but he put a pillow under my back and I laid on it (facing the ceiling) and draped my arms down on either side of the high pillow and it drained the fluid off in a couple of days after doing this.
I also found that changing to a cloth prosthesis worked for me -as the heavy plastic made the lymphadema worse for me. You can buy beautiful lymphadema sleeves on a web site called Lymphadevas.http://www.lymphedivas.com

SuzieQ430

Find a physical therapist who is trained in lymphadema and working with cancer patients. I have a physical therapist who taught me how to drain my lymphatic system--arm, torso, breast, and I have not had a problem. I do have a compression sleeve that I wear for my arm (20 nodes removed) when I exercise or feel the need to for arm swelling.

TASoto

developed a bad case this year on my left arm, just started therapy Monday and already see improvement, needs to be wrapped 24/7 for 2-3 weeks, have learned that if possible needs to be treated quickly if left too long without manual drainage pain will eventually set in, I thank GOD that there is a nice place near where
I live, treatment is covered by my insurance but not my co pay so it can be expensive but i promise you it has good results, my compression sleeve was not helping me so therapy was the only way to go, i recommend you try to find a therapist and get it manually drained then get fitted for compression sleeve and cami !!