Just diagnosed, hoping for advice :/

Mommy2six

So sorry that you have been diagnosed with this. I unfortunately don't have an answer for you, but was hoping you could share with me how you found out you had LE. I have been trying to find out if my swelling is related to LE, its not in the arm but in the trunc area..under my arm on the side of the incision area and chest area where my expanders are. Have been to PT who is giving me exercises and doing some manual lymph drainage massage. but has not said I have it...although the swelling is still there and does not seem to go down. I am also looking for a compression camisole and have not been able to find one in any store. Is that what you are looking for? Hopefully someone posts with information. Good luck and I wish the best for you.

Thinking positive, have you tried the genie bras? I bought mine at rite aid and on Amazon

Thinkingpos:   I use the Wearease bra,, and I also use the Breast Binder from EAB Medical.  They have a bra too!  There is a link to EAB medical on the STepUpSpeakOut page.  You can see if these products cover the areas that you need compressed. My biggest problem is under the arm and around my MX scar.

MOmmy2six:  I was also told I was low risk,,, only 6 nodes and I'm "slim".  (Surgeon's words) yet,, got it anyway.  You need a fitter or LE therapist to measure your arm and get you in the right sleeve. I use Juzo sleeves and they are OK for me, but as you cruise around on this forum, you will see everyone is different in what they use/need for their compression.

i don't know anything about tissue expanders. But I'm thinking since you are doing recon,, that perhaps the WearEase bra or the EAB Medical binder bra would be the best for you.  Maybe you can print the pics and show your therapist if one of them would work?  Or show pics on your phone, etc?    there are other compression bras out there,,, i have to say they are QUITE expensive!!  I think I got my Wearease at CureDiva on a sale.  And Wearease was the only one that had sizes small enough to help me.

I know what you're gong through. I only had one node removed, was not over weight and only six months after surgery developed LE. I was very fortunate to have an LE PT that has LE. I was really losing my cool until I realized that her swelling was minimal. She told me she plays golf and I realized I would get my life back. Yes it takes time to deal with this everyday but it can be managed.

I have to have a custom sleeve because the pre-made wont fit in length, last week I was remeasured and found out that Juzo makes custom sleeve that doesn't have a seam and is a much nicer fabric than the other ones. I have truncal LE but the PT thinks I should start wearing the sleeve to ward off the swelling that may/will come. For the Cami I'm using the Genie shaper right now it's inexpensive and the LE PT thought it would work. For my compression bra I'm using a sports bra from Title Nine, a bra made for mastectomy patients that fit well, and the Genie bra at night. I'm using Cerave cream and Elta lite for my skin.

The best thing I've found to do is ask a lot of questions of anyone that has any info at all. The more answers I get the better I feel and the better my attitude is about dealing with the daily routine.

For some of us, custom garments are a necessity. They do not make OTS sleeves in the compression level I need that will fit me. I need low level, high level makes it worse and they do not make them n low level haf will fit me except custom. Gloves are/were harder to get 'right' - hand is somewhat 'webbed' so OTS cut in (making sores and hurting like Hades).

I do deal with LE and have for years - does not slow me down at all (other than using my FlexiTouch for an hour a day) or keep me from doing anything/everything I want to do. I am a very active 'outdoor woman'.

All PT's are not knowledable about LE. My LET is an OT.

Hi ThinkingPositive, Since your surgery was only 3 months ago, it probably is somewhat early for your surgeon to make an "official" diagnosis of LE. Mine didn't at that point, but at the 7 mo. visit she did. Swelling got worse between those two visits. The swelling you describe does sound very similar to mine 3 mos out. But that doesn't mean yours won't subside over the next few weeks instead of getting worse. And it's good that you're seeing a PT to help get any LE under control early. I was diagnosed with truncal LE only a month ago, so I don't have long experience to share with you. But mine is always swollen and painful around my ribcage, with quite severe pain if I overuse my arm on that side. Wrapping significantly improves both the swelling and pain. Here's hoping your swelling with subside and all will be well.

@thinking positive.........I had a lumpectomy, so what I feel would be different than what someone that had reconstruction would feel. I started with discomfort when I woke up in the morning, it was close to painful to move, my chest from collar bone to the bottom of my breast was sore for several hours in the morning and there was some obvious swelling, I could actually feel fluid movement, bouncing was very uncomfortable. The Onco thought it could be LE the Rad NP thought it wasn't so I started my therapy with out knowing for certain, because I caught it very early and that usually is not the case. I knew the diagnosis was correct when I started wearing a chip pack. It was put between my breasts and would leave dents. One day the chip pack moved and was actually on my healthy breast and there were no lasting dents. The test drive of the Pump removed the swelling from my collar bone to the top of my fatty tissue and eased most of my discomfort. My diagnosis wasn't confirmed (at least for me) until I went for my first mammogram after surgery.

If it turns out this is LE you have a head start on dealing with it and that can make a difference.